Category: News and Views
http://nyp.st/1LmiDsp via
Nuf said; So wrong on so many levels.
A fellow zone user put this a lot better than I could have, so check out what Meglet had to say over at her blog.
https://wheresyourdog.wordpress.com/2015/10/02/the-woman-who-chose-to-go-blind-and-why-we-shouldnt-hate-her/
I'm honestly not quite sure what to do with this. Is it her fault she's blind? Sure. Do I wish I could just pour something in my ears and no longer be deaf? Absolutely. Either way, I'm still human and still have feelings. If you're blind, whether through your own doing or through some medical failure, I don't think that should preclude you from getting services, though I do believe the same expectations should be placed on you as the rest of society. If someone wants to make their life more difficult, who am I to judge?
I actually know Jewel personally because I share the same problem as she does and
I thought I'd like to put in a few words in about us from the perspective of someone
who has the condition she has.
As a bit of background I think most people may not remember who I am so to
elaborate - I'm the developer behind braillemon and I came here because I met a lot
of friends that were blind that told me to come here.
Anyways, she's a very sweet woman, someone who had to deal with a very stressful
psychological issue, but a very nice person. She is studying teaching the blind so that
she can help future blind people with independence. Any claims of her trying to take
money from the government are wrong as well. I don't know the in depth of her
finances but her reasoning was due to her condition and her condition alone.
I have the same condition as she has and it can be extremely frustrating. People who
know me know that I am very dedicated to the blind and enjoy talking with them,
and I really do want to improve the situation for blind people. However inside I have
struggles because ever since I was a child I felt like I shouldn't see.
The best way to view her disorder is that she viewed that her body was incorrect and
it was kind of . Imagine having a third arm on your back - that would probably get
really stressful after a while and you'd want it amputated. In that case, it would be
amputated, but we are people who have that feeling in a part of our body that is
considered normal. In my case it affects my eyes, specifically the neurological parts
of my eyes such as the optic nerve.
She does NOT condone people blinding themselves and says that the way that she
blinded herself was extremely painful, although she would go blind again if given the
chance (to relieve the symptoms). In fact a few months ago I was concerned that
she was trying to convince some person who probably didn't have our condition to go
blind, but upon talking to her I realized she would never suggest to anyone to make
that decision.
My condition is extremely stressful because I feel like I have to live a double life,
hiding my need to be blind. It gets to the point where I literally cannot function
unless I put contacts in my eyes, but this is rare. I often close my eyes to try to do
things the blind way but I'm extremely paranoid about people finding out and having
to explain myself. If I don't do this, I get stressed out from wanting to be blind.
I've been trying to treat it or seek possible alternative diagnoses but unfortunately
nothing has helped, and it's become very clear to me that nothing will probably help,
and I will have to resist this need for as long as I can before a specific treatment
comes out.
Scientifically, the disorder is believed to possibly be genetic and occurs mainly in
populations with German descent. It's often compared to transsexualism due to the
similarity in presentation, and is believed to be associated with a malformation of the
way the brain interprets its own sense of self.
I write a blog, called a-totally-blind-biid-blog.tumblr.com, which contains more
information. This link has a ton of resources about our disorder as well:
http://a-totally-blind-biid-blog.tumblr.com/docs
As a person who also has this condition I plea that all of you educate yourselves
through me, this post and research before passing judgement on us. We struggle to
have our disorder even be made public, just to possibly find a treatment or cure,
because of the enormous stigma that we face as patients. I don't expect anyone here
to accept us simply because we have a condition but I hope that by understanding
the nature of our condition that it can be understood that we are trying our hardest to
cope with it.
The only thing I wonder is why she had to take this route. Was she denied an
operation by doctors? Could she not have donated her eyes? Why such a drastic
route? Otherwise, I respect her bravery and courage. Hopefully our society can
one day learn to accept people with such disorders.
Operations are denied on an ethical basis, same with donations (which is a bit odd I
guess).
It takes a lot to infuriate me, but this article definitely succeeded. This woman must have desperately wanted attention, and could only think of one way to get it: by getting the news media to talk about her. What she doesn't see as pure idiocy, I am sure the rest of the world sees as exactly that. This is wrong and infuriating for so many reasons. Wanting to be blind? Really? Only a lunatic would "want" to be blind.
Let's be real here: I am one of the most positive people anyone could ever know, but I'll be the first to admit that I don't "like" being blind. However, I don't have a choice in the matter, so I make the most of every day I'm given. Still, I'm left to wonder why this is being thrown around like it is something newsworthy.
For the record, the psychologist is just as responsible as she is in making this happen. Psychologists are supposed to be helping patients become comfortable with who they are, not assisting them in becoming someone they are not! They are both idiots as far as I’m concerned and I am left shaking my head at what a sad life some people lead.
All that being said, I assumed that this article was a truthful account of her experience (evidently other people have assumed the same). However, another thought that occurred to me was: what if this was a hoax? I know I touched on the fact I think she's an idiot who just wants attention, but I really think that's what we are seeing here. She talked to the news media about how her and her psychologist came up with a plan to make her blind; to me, the tone sounded like she was bragging...and with how many people are talking about her story, she will be getting attention until this dies down and something else gets people up in arms.
Another point I forgot to mention was how the article claims she has some kind of "disorder." Really? Give me a break! I wish people would stop pussyfooting around and learn to become comfortable with calling things what they are rather than hiding from reality. This woman is crazy; that is a fact. This woman has a "disorder;" that is a cop-out and signifies that people want to avoid acknowledging uncomfortable truths.
I don't want to be rude but I think while there are probably better ways to manage
this disorder, I don't think that it's justifiable to just claim that "she's crazy because
who would want to be blind?". If eyesight was causing someone noticeable suffering
then that would be justifiable to want to be blind. In fact, some people who don't
have the choice, such as those born with congenital glaucoma, choose not to
participate in further surgeries when they're older because the stress outweighs the
benefit in their eyes.
And ultimately, if this is some sort of lower functioning brain disorder, such as
damage to part of the brain, there may be nothing that can be done, and they
likewise don't really have a choice in suffering this condition either. The suffering is
both physical and psychological.
I'm frankly not sure what's going on with that psychologist. When she told me about
it initially she never mentioned someone else was involved. I really don't agree with
what they did because that's still extremely dangerous. Perhaps if surgery was a
viable option I wouldn't be so questioning but the last thing you should be doing to
someone like that is encouraging them.
I've provided links above to a blog that I run that contains links to scientific studies
to justify the disorder's existence. I understand that you may be offended by the fact
that people may want to do this to themselves but I think that the studies are pretty
clear that this is a rare and unusual brain defect.
Unfortunately a "disorder" and "crazy" are two different things. The disorder is not
considered psychosis because the so-called "crazy" part only exists in one part - aka,
the wish to be impaired. This suggests there's probably some lower level function
that is causing the conflict. Of course, a lot of people label whatever they feel makes
them uncomfortable as "crazy" so there is that.
Ultimately, Jewel worked with these individuals to raise awareness to our condition,
because she and others like her want to go and seek better treatment options. It
may be possible one day to detect these issues and treat them before they develop
to the point of Jewel where they were so difficult to manage that she felt like she
had to blind herself. Jewel made this so that people like her don't have to go blind,
not because she wanted to encourage or celebrate it.
I don't know what I think about this. I haven't from the first time I heard of it, and I still don't. But I have to respect Cody for at least not falling into what seems to be a huge contradiction in our society.
This woman poured drain cleaner into her eyes because she sincerely believed that she was meant to live as a blind person, and now she says she has never been happier. Every Facebook post I saw on this was preceded by how crazy this woman is. Honestly, my first reaction was to call her crazy, too, and I'm still not sure she isn't. She suffered from Body Integrity Identity Disorder. I know little about it, but I have heard of it. What I find curious is that our society calls wanting to be disabled, driven by a strong feeling that you were meant to be disabled, and being happier once you are, a disorder that people are afflicted with and suffer from. However, taking pills or injecting substances which alter your natural body chemistry, and/or having risky surgery to cut off, or add to, parts of your body in order to change the natural gender you were born with because you sincerely believe you were meant to be the opposite sex, and being happier once you have, is considered completely normal and something to be celebrated. People even called Kaitlyn Jenner courageous. But this woman is called crazy. If being transgender were called a disorder as I believe it used to be, the public outcry would be phenomenal. If Facebook posts about someone changing their gender were, (and sometimes are) preceded with the kind of criticism I have seen about Jewel, the backlash against the critic would be swift and severe. The critic would be called close-minded, a bigot and more, while the transgender person praised for their bravery.
I'll be the first to admit I don't understand or agree with either one of these changes in one's body, I just find it a very interesting societal contradiction. I wonder if it's because our society still views disabled as broken? Why is everyone surprised that a medical provider helped her with this? Medical providers help people change their gender for the same reasons this woman wanted to be blind, yet no one is clamoring for the revocation of their licenses. I don't understand the desire to change your gender, and certainly not this woman's desire to be blind, but nor do I understand why people embrace one and scorn the other.
I wonder about the condition.
Why did she choose such a painful, and probably destructive as far as her face went to go blind?
The stuff had to burn her skin, so she not only is blinded, but disfigured?
Also her eyes now look bad. Whoever helped her need to be find and relieved of licenses to practice.
We have operations to change gender, but I also feel a person requires mental assistants when they wish to make themselves disabled.
Not only will she be less able to help the blind now, she’ll be less able to help herself.
As independent as we can get, we still can’t do what we might if we were abled.
You say it is like having a third arm, but I can’t view it that way, because vision is something you don’t feel, nor must you use if you decide.
She could wear a sleep shade 24 7 if she chose.
No, it isn’t exactly the same, but it will keep society from having to now support her.
What if the government said, find, you can be blind, but because it is self-inflicted, you can’t receive any support? Would this be fair?
I too have no choice in the matter, and frankly, I think she’s mentally crazy to do this.
If a person changes gender, they are able. If a person commits suicide, they don’t take anything from anyone.
In this case, she’s now dependent, unless she’s self-supported, meaning rich.
Is that the case?
If you have this condition, you should be helped with it.
It is really sad more than anything else.
The seeing believe they understand what it is like to be blind, or could deal if they actually went blind, but unfortunately, she may now have other issues because she’s blind.
Sort of like cutting off your noise to sight your face.
I pray she doesn’t.
I'm honestly not trying to pick on Alicia here, because I think her post was
very well thought out. I'm just using her as the example because she said
something I think needs to be questioned slightly. I am not, in any way,
criticizing Alicia, so please don't take it that way.
One phrase that was repeated in Alicia's post was "I don't understand", and
that's fine. I don't understand it either. I can't imagine wanting to live this life.
But there are a lot of lives I can't understand wanting to live. I can't understand
wanting to be another gender, or another race. I can't understand wanting to be
christian or republican. But people do them all the time. It is not for us to
understand, so whether or not we can understand it is beside the point. It is for
us to accept people and their disorders. If we expect ourselves, as people who
cannot control our conditions, to be accepted in society, we have absolutely no
right criticizing other people for their's.
Look at Chelsea's post. Chelsea basically said, "I wouldn't want to be this way,
so you must be crazy for wanting to be this way." But I would never want to be
like chelsea. Does that mean chelsea is crazy for wanting to be who she is? I
don't understand, and I can't imagine, holding some of the opinions which
chelsea does. I can't imagine being as bigoted as Chelsea has displayed herself
to be. But does that mean that Chelsea is crazy for being who she is? I assume
chelsea wants to be how she is, so should I be able to call her insane for it?
as for Wayne's point, it was only, according to the article, a few drops of drain
cleaner, so I doubt it burned her skin to the point of her being disfigured. More
importantly though, I think you're wrong in saying that she will be less able to
help blind people now that she is blind. The two people who did the most for
blind people in this country, though one was not American, were both blind. The
people who got bills passed have either been blind or been helped and
supported by blind people. We have blind lobbyists in congress. We've had blind
protesters hosting sit-ins for blind rights. To say that she will be less able to
help us because she is blind is bordering on saying that the blind people can't
help themselves. Which is absolutely not true.
So I really think people need to take a step back from this situation. First of
all, it doesn't effect you. Forget this notion that people will be less likely to help
you find your way because they saw this article. That's just dumb, and I've seen
it argued. Forget the idea that people will be less sympathetic towards blind
people because they saw this article. That's also just dumb. Forget the fact that
you can't understand why she did it. Its not for you to understand why she did
it. its for you to accept her for who she is. Who she is is a person who felt she
would be better off and happier as a blind person. And from everything I've
seen of her, she seems to be happier now that she is. I think we should all just
leave it at that.
Wayne, you actually bring up the only difference that I do see in the blind vs. transgender argument I just made. In my previous post I was speaking strictly about people's reactions to her. But yes, it does raise the question if she should be entitled to assistance, because it was self-inflicted. Also, I read where she complains about things like paratransit service or other inconveniences of being blind. I can't say she doesn't have a right to make those complaints, because anyone has a right to say what they want. But I have no empathy for her as I would for another blind person, because that's the life she chose, with all those inconveniences. When you chose it, you don't have my sympathy when you bitch about it. Same with when she may face the discrimination that the rest of us do. She chose that life. Which goes back to the part of me that does think she's crazy for having done this.
If she's happy now, who am I to judge.
I've found the blind community very judgemental, and some others have touched on it here. We fight to be accepted, we argue that we are equals and that people shouldn't see us unfortunate. I spend so much time showing people that disabled isn't helpless...and so do many of you. And yet people say she must be crazy for wanting a disability. It's a bit of a contradiction.
I understand that we didn't choose our disabilities and she did, but is it so wrong to want one? I am happy living as the sex I was assigned at birth, but do I think it's wrong that others aren't? Of course not, and if you want to live as a different gender then go for it. So why shouldn't she change her body as well.
I can't comprehend the anger and hate. Is she actually hurting you? Up until recently when she shared her story had her life actually ever had a negative impact on yours? She's been blind for 7 or so years now, so if it was really going to affect you that much it would have by now. Honestly I'm not sure why we are all talking about it, because it doesn't cause us any harm so I'm not even sure why it's any of our business.
All i'm saying is does it actually hurt you that she's become blind. Probably not.
I've heard this argument a few times, that she shouldn't be allowed to receive
aid because she chose her disability. I find it rather silly to be honest. There's no
law that says a disability has to be accidental for you to receive benefits. If
there was, a lot of people would be in trouble. HOmeless people are often told
they chose to be homeless. Should we deny them benefits? People in places
prone to natural disasters are often asked why they chose to live there. Should
we have denied benefits to people in new orleans after Katrina? Of course not.
so why should we deny benefits to this woman?
I’m not in favor of denying her anything at all. We have plenty to give.
I just wondered how she’d feel if she were deny?
The people stated in the post above also had no choice in how things happened to them, sometimes not even the homeless. This person did 100%.
Her being blind is not hurting me at all, however, I do wonder if she’s completely happy with her choice?
Sure, in the public, she’s going to say “Oh, I’m over joyed now I can’t see.”
The blind can help themselves, but it is a fact, we cannot do for ourselves as we could if we could see with the same mental, and abilities.
This is how the world works like it or not.
Like Tele transit, why is she bitching? Why isn’t she on the bus?
As a blind person, I didn’t know about teletransit for over half my life. If she’s truly so better off, why doesn’t she walk to the local bus stop as she could when she could see?
That is an odd question, but I feel it makes a point, she’s not as well off as she was, and she’s not even as well off as some blind persons.
Maybe it makes her feel good to struggle, but I’m not impressed with her efforts.
I have not gone to the media and said, hey, look, I’m blind because…
She chose it, so enjoy it, don’t make a big deal over it if you are truly wishing to be blind.
I agree, she can bitch, but I don’t care she has hardships, because frankly, she chose them.
If she has to wait 4 hours to get someplace, enjoy it, don’t bitch, because it was what you wanted.
Again, she’s not hurting me, I just want her to be quite about her joy so to speak.
She is not like me and can never claim the same place I’m in.
Agreed. Also, take drug adicts. Should we not offer them rehabilitation because they chose it? I really hope we live in a more progressive society than to stick with this attitude.
Also, when we really get down to it, did she really choose it? Ok, she did get someone to damage her eyes, but she didn't choose to have this feeling that her body was wrong. She didn't choose to identify with blindness. She didn't choose to feel like being sighted meant her body wasn't right.
So actually, I would rather her be blind and happy and live a fulfilled life using blindness services than be sighted and miserable and potentially unable to function because of how unhappy she might have ended up.
Find, be happy, don't bitch.
It is how it goes.
Another example, she, if she's not had her eyes removed, can't complain because a seeing guy doesn't want her, because he can't stand the sight of her ruined eyes.
I can't see the pictures, so what I say may not be grounded, but I can imagine what happened to the tissue.
Does being happy with your life mean you're unable to bitch about it? I'm
happy with being blind, can I not bitch about taxis being an hour late, or sighted
people who think the middle of the sidewalk is a perfectly good place for a
group chat? I'm happy with my gender, can I not bitch about guys who can't
keep their hands off of women, or the fact that I get lumped in with them,
understandably or not, because women are afraid to go on dates these days, or
some women anyway. I'm happy with my age, can I not bitch about how people
assume I'm wrong because I've only been alive 26 years instead of 62, and how
people assume that any opinion I give is invalid because I'm only a given age
and thus there's a possibility that my opinion can change, even when we're not
talking about an opinion. I'm happy with my intelligence, can I not bitch about
how people assume I think I'm better than them simply because I'm right about
something, or how I can't have a good conversation because most people
accuse me of being a know it all even when all I'm trying to do is correct
something they said that was wrong?
Being happy with something doesn't mean its perfect, and choosing
something doesn't mean you can't bitch about it. Your argument just doesn't
hold water. Just because she chose blindness doesn't mean she can't bitch
about some things. if that were true, no one who ever moved somewhere would
be able to bitch about an attribute of that place.
I'd just like to point something out...something I feel is being overlooked a fair bit here. Daigonite, sorry in advance if this offends.
The desire to disable yourself is not rational. Most people don't even dream of this, can't wrap their heads around it. If you do want to disable yourself or live without one of your senses that otherwise does work for you, then you're in a very very small percentage, and you're not mentally normal. Now before anyone jumps down my throat here, I'm only saying this for one reason: a lot of these arguments and bits of outrage and disapproval are couched in the notion that a rational person with no rational shortcomings is making what they perceive as a rational choice. This is not the case. In the case of BIID in particular, a person who may be rational in a lot of other ways is making an irrational choice because they feel it's right. This is a mental disorder, and ideally I wish there were coping strategies to help those who suffer from it.
When the question of whether Jewel should get benefits comes up, it is linked again to that mental disorder. She didn't just wake up one morning and decide to be blind for a lark. She didn't just want attention. That's an awfully freaking stupid thing to want to do for attention, I should think. She had a serious problem which led her to believe she would be happier without her sight...and it's actually been proven true. So it's not just a matter of whether or not she should get benefits because she willingly blinded herself. It's a matter of the BIID she suffers from, which vastly complicates the situation.
Now, I'm gonna go ahead and say that I think the trans issue is considerably different. Most people have no idea what it feels like (self included) to want to be anything other than the gender they were born with, but I think most rational people, if they were asked if they wanted to chhange gender and accept all the silly stigmas attached, would say "hell no!". The people doing it aren't out for attention, they're not trying to sicken anyone, they're not trying to be the "new wave" of anything; they're mentally confused and conflicted because things in their brain are frankly not linking up. They have issues with their body or their mentality or both, and would probably classify, in its own right, as a sort of mental disorder.
So I hear you asking, "But Gregg, didn't you just say they were considerably different?" Yes, they are. Because transgender people aren't disabling themselves. If gender-swapping is a big deal - and it is - then deciding to go through with a procedure to blind yourself is far beyond that. If some of you think it's way out of left field to want to be a different gender, then wanting to harm yourself and lose one of your senses would be far more irrational yet. Please consider this when or if you think it's an attention grab, or crazy, or something you should be judging at all.
Frankly, people willing to go to that great an extremity should get help, because no one ought to be harming themselves in order to be happy. That just makes me sad.
Now, I want to finish on a note that I'm sure is going to upset at least one of you.
This bullshit of "I don't agree with" has to stop. If you don't get it, you don't have the means to agree or disagree with it. Plain and simple. If someone came up to you tomorrow and outlined a complex neurochemical reaction formula in about two minutes, then asked whether or not you agreed, you'd be pretty out of your depth, right? Guess what? If you aren't transgender, haven't struggled with it, haven't been really really insanely close to someone who has, then trust me. You don't get it. And even if you -have been very close to someone going through it, you only get it a little bit. And that's okay. It's fine that you don't get it. But if you don't understand, then you don't have any moral right to agree or disagree. Disagreement is essentially disapproval with a nice jacket on, so shame on any of you who dare do this about any issue you do not inherently understand.
For the record, I don't have BIID and I am not transgender. I'm not even gay. I'm pretty straight. I don't understand what it's like to be a woman, or gay, or black, or sighted, or a sufferer of BIID, or bipolar, or anything like that. I know bits and pieces, and I am more than capable of judging -behaviour associated with all of those groups. But who the hell am I to agree with or disagree with conditions like that? Looks kind of high-handed when I put it like that, doesn't it?
The only problem with that Greg, is that transgendered people, only a short
time ago, were said to have a mental disorder. The only difference is progress.
We've progressed to the point where we accept transgendered people as normal
people. We haven't progressed to that point with people who suffer like this
woman did.
aS for the difference you outline, I ask you, what does disabled mean? Is it
really disabling herself in this society? I don't really think it is.
I still need to read more posts. But, I want to know how people can listen to Chelsea judge, and not want to give her a piece of your mind? I'm a Certified Peer Counselor in my state. I cannot believe she's on a board, where someone, where people are discussing a mental illness, and calling the person being discussed "Crazy?"! I don't have a problem joking around, but, Chelsea is serious! Judging without even thinking. Telling us how much better than the person in the article, Chelsea is. I'm not trying to be all PC, and stuff. You, well, some of you know, I'm far from PC. I call myself a cracked nut in fun. I have told jokes, and have put my foot in it, and laughed about it. But, it's just more than wrong, and borderline verbal abuse, for someone to come out here, and tell someone that another person with his same condition is "Crazy." There's a lot of unusually strange things going on out in this world. From undetectable bacteria, to unusual mental health conditions. And, for someone to say it's not real, well, how do you know it's not real, if you never studied psychiatry? Yes, this upset me, because I've heard all these accusations used to put people down. I'm not going to say I never offended anyone, or I'd be lying through my teeth. But, I have learned of things, including my own situation, that have totally changed my views on what "Crazy," means, or what suffering is.
I didn't get to read the article, because, my computer won't let me click on some of the links. It's old, and I'm working on the problem. But, that being said, I will read it with an open mind. But what I've heard of, studied in training for Certified Peer Counseling, and stuff on the news, and things I've experienced, anything's possible.
All that to say this: People who come and admit they suffer something, should feel safe posting. How can they, when someone's saying that people with that condition are "Crazy?" In my opinion, mind you it's only mine, it's like calling someone stupid because they don't learn as fast as we think they should, or saying someone's Psycho. I know, there's less and less tolleration of those terms. I think everyone can think of other terms, so I don't have to elaborate, or anything. It's just enough is enough. When people post stuff like this, they shouldn't have to dodge verbal bullets, for lack of a more suitable term.
And, Dagonite, sorry if I spelled it wrong, you have guts, to come out admitting that you are dealing with the same condition. I have respect for you. And, I'm sorry anyone would even think to come out here, and call someone who is obviously dealing with a severe problem, crazy. It's not right.
Blessings, and I'll be praying you stay safe.
Sarah
Don't worry, your post doesn't offend me.
I don't necessarily disagree with the fact that what this is is a mental disorder - not even Jewel
disagrees with that. It isn't normal to feel like you're incorrect all the time - however, that's not
really the point I was trying to convey. Her point is more showing the end result and severity of this
condition, and why we should be promoting research for this disorder.
We all know we're not normal, we're not trying to lie to ourselves about that. However, we are
trying to explain to people what we go through on a daily basis. The thing is, we need help, we need
people to be aware of our condition so that we can have an improved chance in finding help.
Being mentally ill and being psychotic are two very different things. Mental illness is quite common
and can range from something as mundane as mild depression to something as extreme as
schizophrenia. However, psychosis is when a person is literally unaware of reality - and all studies
on individuals with BIID does not suggest this. It's not appropriate to call us that based on the
definition of psychosis. However, mental illness can be crippling even if it's not psychotic in nature.
Rather what I was trying to suggest was that the reason that people like Jewel and I feel like we feel
the need to be blind because of some sort of issue in our brains. If anything, a true treatment would
be really ideal - I wish I could do everything I do sighted blind, but that's impossible - but in Jewel's
case, the symptoms were so severe that she felt the need to take immediate action.
When you talk about transgender issues, you focus on the end result of our condition. However, the
end result of "transitioning" does not change any of the pathology of the disorder in any way. I think
the focus should be not on the end result because regardless of whether or not people with BIID
cripple themselves, the proper treatment will be based on the actual pathology of the disorder.
Regarding "transition", I feel that it is only appropriate in the most extreme of cases. I don't know
Jewel's mental state when she actually blinded herself but a major problem with patients with BIID
is that the sensation of wrongness can be so extreme that they will resort to extreme actions to rid
themselves of the affected body part - Jewel's case is relatively tame in comparison to those who
use dry ice and even trains to try to amputate their limbs. This is life threatening and it's honestly a
disgrace that ethics often argues that their deaths through self amputation are less problematic than
potential surgery.
In all other cases, therapy should be instilled instead. Because of the severity of the final result it's
really unethical to argue that "Transition" should be an optimal end result.
Again, this issue should be treated as a mismapping of identity, not as a psychosis, because the
patient is reacting to an incorrect internal identity, not hallucinations.
One thing I find infuriating that someone pointed out in this thread was the hypocritical social notion
between transsexuals and people with BIID. Again, people are focusing on the end result of our
condition instead of the pathology, which is remarkably similar (early onset, mimicry behaviour,
attempts to realign physical form to match internal identity). While I don't think this should affect
how treatment is carried out, due to the disabling nature of BIID, it is really strange to me how
people refuse to look at how we are extremely similar. Pathology is more important because it
dictates how a disorder progresses - while the end result is just what relieves the disorder.
Regarding Jewel's relationship to blindness, she doesn't hate it and honestly I don't really see what's
wrong with her complaining about the buses. I mean honestly it affects everyone involved and even
though she chose this, it's a legitimate problem that if fixed would help everyone. You don't really
lose the right to point out a legitimate issue like that just because of the circumstances. That's just
my two cents though.
Cody, let's be realistic. Blindness is a disability by all common definitions of the word.
Daigonite, you're right. There's a lot of similarity, which I did point out. The only reason I pointed out difference is because people seem to think they have the right to "not agree" based on silly religion-based or ignorance-based ideals, and in the case of BIID it holds up even less logically than it would for a transgender person.
When I said stuff like "not normal" and "mental disorder", that's as far as I was going. It sure isn't psychotic behaviour to want to change your gender if you have identity issues, nor to want to blind yourself if you have BIID. It's a disorder though; it's not typical, it's potentially harmful depending on what you are prepared to do.
And, regarding Chelsea, the dirty truth is really quite straightforward. She's still here and still being allowed to quack because this site doesn't allow the banning of its members for expressing views, even when those views are demonstrably hurtful, uninformed and trollish. You'll have some who say that cracking down on behaviour like this would kill the Zone's free-speech ideology, and they'd have a point, but there's also a valid point when arguing that certain posts, and certain users in particular who make said posts, really ought to be dealt with sometimes when they go too far.
The reason we don't call Chelsea out anymore is because, frankly, it's not going to change anything. We all basically know she's talking crap ninety-seven percent of the time. If she makes a worthwhile contribution - it does happen from time to time - she gets acknowledged; if she says something ridiculous, the best thing to do is ignore her, insofar as responding directly to her is concerned. That, at least, is why I don't tear her apart at every opportunity, Sarah. There's simply no point. There is no way for I or anyone else to make her stop doing these things; repeatedly telling her how wrongheaded and downright unkind she's being, no matter how it's done, serves no purpose, and she just continues going on in whatever direction she pleases,.
Sorry for the mini-rant, but that's my two cents' worth on the issue. If it all made me sound kind of snarky and high-handed...well, normally I'd do the Canadian thing and apologize for it, but not this time. It's harsh, and it's true as I see it, so deal.
I will admit I can’t quite wrap my mmind around this one, but probably more because I just don’t understand the condition. I’m only speaking through my own perspective as well, but to me, whether or not I had eyes that actually saw anything or not, or put another way, if I had two non-functioning real eyes in my head, I’d still hesitate to put drain-cleaner in them because speaking just for me, I don’t really relish the idea of injuring myself that way. That said, I don’t know enough about this disorder to say one way or another what I think about it. But then, I’m sort of an extremist when it comes to people being allowed pretty much to do their own thing as long as it’s not harming others. I suppose if she’s happier as a blind person than she was as a sighted one, then so be it. It’s not really my place to judge or interfere. But being a relatively contented blind person doesn’t mean that I don’t find some aspects about blindness to be bothersome. Also, I do think that there are some privileges that the sighted enjoy that we don’t. I can’t yet just hop in my own car and drive to the casino or something if I want to get out and just be on my own; it takes a little bit more planning, and sometimes a considerable degree more money than I want to spend to be able to do it. And my cane does make me stand out amongst the so-called normals, sometimes to the point of having some of them call undue attention to me that I don’t want by behaving in ways I consider inappropriate. Our judgment as blind people is questioned more than someone who is sighted. Our abilities are questioned more. Our intellects are not always appreciated. Our rights to decide for ourselves are not always respected. If she wants to be blind, then she wants to be blind. But these are some things that I feel she will have to endure as a blind person. I endure them. Probably every blind person on these boards does. But speaking strictly just for me, there is relatively little at this late stage of the game that I would change about myself, and that includes my own blindness unless I absolutely had to.
Now,, for Chelsea. I’m actually gunna defend vigorously her right to say whatever she wants to say on these boards. I see some interesting contradictions between some of her present and past statements, and I could point them out if I wanted to, but I think banning someone for what they say, no matter how ridiculous or unkind, is simply stupid in its own way because it actually discourages discussion. If you know you can get banned for saying something that may offend someone, you’re probably likely to mince your words and be afraid to post. I’d rather not have that for the most part, unless someone says something truly defamatory. Offensive is probably in the eyes of the beholder, so to speak, and I might say something that offends someone else even though I think it’s perfectly acceptable under the circumstances. Besides, there’s that evil side of me that does enjoy demolishing someone else’s stupidity if I’m in the right mmood. And I think I’m pretty good at it, so I wouldn’t want to be deprived of the opportunity to do so.
I'm just going to address several posts at once here.
Shepherdwolf: whether you categorize it as a mental illness or not doesn't detract from the fact that, in any given situation, you're still a human being. As for the desire to disable yourself not being rational, I disagree. If, say for example, I'm someone with glaucoma who is in tremendous amounts of pain and the only way to get rid of said pain is to remove my eyes, how is that irrational? If the few benefits I gain from my limited sight no longer outweigh the suffering I must endure because of my condition, what part of that is "crazy"? What about babies born with retinal blastoma whose families may be able to preserve their sight with extended treatments? The cancer can progress to other parts of the body, but can be stopped, at least temporarily, by removal of the eyes. Finally, I have a friend who has a condition related to auditory stimuli. Essentially, he cannot stand too much noise. There is nothing wrong with his ears, but there is some sort of neuro issue going on which makes the processing of noises a grate discomfort to him, especially over prolonged periods of time. While he has not decided to go deaf or to disable his hearing beyond wearing earplugs, he has talked about doing it. Not because he's crazy, but because the advantages of hearing are not worth the suffering to him any longer. Think of it as which form of suffering is least harmful to that person. SO I posit that this could be a completely rational decision.
Aunt Hot Wheels: Chelsea obviously has views which will not change, and for myself, her post added nothing to the intellectual conversation. If she feels that way, good for her, but you can't argue with someone who has a set way of thinking, so why waste the energy? She is obviously contributing to the attention seaking if she's posting on the board, so that's kind of hypocritical.
A person can bitch about anything at all. The issue here is does she get any sympathy from me a blind person not by choice?
Nope.
Now as a human and having kindness, I have no choice but to feel sorry for her, but that sorry has a different level then for a person that had no choice.
One thing she’s got going for her, is she lives in a place she can have that choice, and still be okay. If she lived in say Bangladesh, she’s basically be a beggar after her choice.
Next, she has the benefit of technology. Strip away the technology and place where she happens to live, I wonder if she’d have made such a choice?
Being blind isn’t a curse, and the worst thing you can be of course, and people myself included, are perfectly happy as a blind person. However, choosing it will bring about other struggles a person would not have if they could see.
I’m speaking from the prospective of a person that once could see to some degree.
On Chelsea, I’m not sure why she can’t voice her opinions here without all the backlash? You don’t have to agree, and can say so, but the rest?
She’s not the only person that thinks this woman’s crazy for choosing blindness who has posted here.
Seems to me this is open conversation and I’m happy we all can express ourselves as we please.
You're right wayne. This situation would be drastically different without all the
technology or in a developing country. However, if we're going to take that
route, without our society evolving, we'd all be food for some wild animal at a
very young age because we didn't see it coming, or some other horrible death,
if we'd even be able to survive birth. The sad fact is, if we're going to throw
science into this argument, we all should be dead. We're evolutionary dead
ends.
as for why chelsea can't post without getting all the backlash. That's because
her posts are awful, and while everyone is entitled to have an opinion, they are
not entitled to those opinions going unchallenged. That's not a right anyone has.
This woman didn't just talk about her desire to become blind, she chose to do whatever it took to make herself become blind. Anyone who says that she didn't choose this path and supports what she's done is obviously not thinking things through.
She was born sighted; she is in no way helping blind people now that she's become blind herself. She certainly could've helped us blind people by staying sighted. Maybe as a sighted person she could've offered to drive for us since you know, being blind and all, we're unable to drive. Maybe as a sighted person she could've offered to read for us; there are lots of ways she could've helped us if she had truly wanted to do so.
Going back to what I said above: I have no sympathy for her whatsoever. She has no right to complain about anything blindness-related because she asked for this! She wanted this to happen, and went through motions to make it happen. That is ludicrous, crazy and unhealthy, not to mention attention seeking. Very sad indeed. Sad for her family and sad that she made such a stupid decision as to go through with something like this.
Just want to address a few things here:
1. Irrational is not crazy. There is a difference. I'm staying away from that "crazy" word.
2. If you have a condition that causes you tremendous pain or threatens your life (as in your retinoblastoma example), then the decision to disable yourself either to stop that pain or limit the damage cancer might otherwise do to you) is not irrational at all. It is extreme, but sometimes an extreme decision is the only way forward.
3. When speaking of BIID, I am assuming that if you don't give in to the desire to disable yourself, you aren't in mortal danger. Daigonite has difficulties but mostly seems to be managing all right; Jewel wasn't on the verge of death as far as I know before her psychologist helped her put drain cleaner into her eyes. This is in no way meant to belittle the issue, only to say that it is not what one would call mortal danger.
4. When speaking of rational vs. irrational, try and think of a resting state to prove the point rather than extreme cases. Your average person, given no extenuating circumstances, would see removal of a sight as irrational. That's all I was ever trying to say. We, who don't have the issues, would label it irrational.
And let's remember, too, that I never once said "irrational is bad". At the absolute worst, it means we who are largely rational can't wrap our heads around it. At worst, it means mental disorder (in the case of BIID) is skewing things rather mightily.
Johndy, at worst, I'm saying that certain posts should be deleted. When an atheist goes into a Christian board and starts ranting, squash it. Same goes the other way. When a person does nothing except troll someone, delete it. And multiple deletions might get you suspended. You're right, of course, when you say that people shouldn't run in fear of saying the wrong thing, but I think most of us know the difference between right and wrong, and know when they're out of line. I'm not saying that banning a user the very first time they even remotely upset someone is good, but just a bit of appropriate censoring might go a long way toward removing undesirable elements. Because here's the thing I don't like. Say someone wanders in here later and reads Chelsea's stupidity, and gets really upset by it. I mean okay, it's the internet, and you need a bit of a thick skin on the net, but still. Why should that stand and basically be a potential land mine when there is absolutely no reason for it to exist in the first place? I mean, we don't have flat-earth people anymore, so why are other equally erroneous viewpoints being allowed to stand?
And I'll finish by saying something else that might ruffle some fur:
Any of you who think Jewel's case is going to change the world...you're kidding yourselves. She's not a "bad example". She's not a "bad blind person". She shouldn't be denied services. She isn't crazy. She already admitted that going as far as she went was extreme, and that doing it the way she did it was probably a bad idea. She's still more than capable of helping the blind if she goes about it the right way. She's still entitled to be upset about the shortcomings of the world. Just leave the woman alone. Most of us have no idea what it would be like to be in her shoes, so let's respect that.
But stupidity can and should be challenged. The more you delete posts, the less likely you are to be able to challenge someone and either persuade them to go away, or perhaps to change their minds. Let’s take the former. I note that on another board topic, there was someone who upset a lot of us by his/her/its stupidity. And eventually he/she/it exposed that stupidity by asserting claims that could easily be refuted just by going back and pointing to previous posts and pointing out just how patently obviously stupid they were. As far as I can tell, he/she/it never came back. I looked just to be certain, and I haven’t seen a posting from him/her/it since late May.
As for censorship, I submit that in large measure we’re already able to do so without necessarily deleting or censoring people. If we see that someone is obnoxious or a troll, we can easily skip over their postings and not read them. Sure, there have been extreme cases where people have been deleted, but I, for one, am very cautious about employing censorship most of the time, unless something is clearly defamatory. I actually want stupidity to be exposed for what it is, and deleting posts because someone might be upset by them isn’t the way to go in my mmind. Sure, I’ve been upset by some posts, but I’ve responded to them. If you delete someone’s postings in the name of appropriate censorship,, then who defines it and where does it stop? You get yourself a war over what’s appropriate censorship and what isn’t and who defines it. I don’t wanna go there.
But then,maybe this is going far afield from the original topic. Getting back to that topic, I guess I still can’t quite figure it out. I mean, from what I’m reading, her psychologist helped her put drain cleaner in her eyes because she wanted to be blind, and yet a surgeon, for ethical reasons, would not perform an enucleation on her in order to remove two perfectly functioning eyes. I’m wondering why one wouldn’t use the same set of ethics as the other to say I’m not gunna do that. If a sighted person wanted me to do that for him or her, I’m pretty sure I’d say no. That’s a decision you can’t come back from if you succeed in doing that. There’s still a part of me that would look upon it as harming the other person, even though they wanted me to do it,and even though I’m reasonably comfortable with my blindness. I had an enucleation in 2012, but I was already blind, and I wasn’t losing anything except a non-functioning eyeball, and I did it to get rid of the discomfort I was feeling from the eye. That’s a whole different kettle of fish. I lost nothing except the eye, for there was no sight to lose. And the odds are pretty high that in this incarnation, I probably will never be able to see. I’m comfortable with that while acknowledging that there are advantages to having sight that I will never have. Of course, and I’ve said this before, if the opportunity suddenly arose for me to see and there was a 100 percent chance that it would work, I would never be the first in line. For me, it would be a purely utilitarian decision because at that point, I’d have to conclude that the advantages of sight would have to outweigh the disadvantages of remaining as I am now. When blindness is phased out, as it probably will be someday, these questions will simply not arise. We, by necessity, will be phased out.
Johndy, you make a fair point about censorship. I'm not in favour of starting to lock everyone down, of course, but I do feel your scenario works best when a successful challenge of stupidity actually does something useful. With the user you're talking about, maybe it did, so okay. With Chelsea, it demonstrably -doesn't work. She just keeps coming back and saying stuff. I ask you: what good is it to challenge stupidity if the perpetrator of said stupidity is just going to keep spouting it? The rest of us already know it's stupid, so no one's gaining anything, and the potential harm done to someone who does not know board members is something that may come up.
I dunno. I'm not saying you're wrong, only that I don't think it's entirely clear-cut.
This thing about deliberately blinding yourself has actually put me in mind of such things as assisted suicide...which is, in its way, the ultimate form of self-harm you can never come back from. Jewel obviously isn't dead, which is good, but a lot of people take serious issue with assisted suicide. Me, I think if you're in a lot of physical distress and maybe can't do it yourself, why should you suffer for months or even years, possibly piling up increasing medical bills, if you're absolutely certain of the end you'll face? People think putting a pet to sleep is perfectly okay, but it's somehow sacreligious and monstrous to end a person's suffering, even if that person is totally on board with it and is begging to die because they can't stand their pain anymore.
I dunno. It just further cements the fact in my mind. If we haven't lived it, it's really quite difficult to make a judgment call that's going to stick. I can't conceive of ever doing it myself, but I don't have BIID, so what do I know?
Sarah, I imagine plenty of people would love to give Chelsea a piece of their mind, but like so many others have pointed out here, there's no use doing it. She's going to believe what she believes and say what she says, no matter how cruel or hurtful, no matter what anyone says to her. But she does have the right to say it. The zone would start down a very slippery slope if they started censoring people's posts. I guarantee you that would create one hell of a fire-storm among both staff and users. CL's come from a variety of background and values systems. The terms of service are incredibly subjective already, so that sometimes two different CL's would make two totally different decisions about the same issue, and neither would necessarily be wrong. How much more so when staff started saying what was and wasn't ok to post here. If Chelsea truly upsets you that much, put her on ignore, including her board posts, so you won't be upset by them.
Gregg, I agree with a lot of what you said except for one thing. People have the right to do or believe a lot of things. Jewel did have the right to do this to herself, and while she doesn't have my sympathy when she faces transportation issues and so on, she certainly has the right to complain. Chelsea may say some incredibly hurtful stuff, but she does have the right to say it. And, people do have the right to agree or disagree with what Jewel has done. You may think it's based on ignorance or whatever other reasons and not like that they do it, but it doesn't take away their right to do so.
What she says is abusive, and I can't believe it's allowed. I have the right to say what I want. But, if she was being racist, like another user, she'd be repremanded. This is my problem. If she said something like calling me a cripple, she'd be repremanded. If she used religious slurs, she'd be corrected. Why the heck, is calling someone with a problem with their brain Crazy, allowed?!
You bet, I want to change it! I don't want to take her rights away from her, but I also have the God-Given right, to log on, and feel like I can type on a topic, without her calling someone who did damage to theirself "Crazy!" It's wrong!
Blessings,
Sarah
P.S.: I'm "NOT" backing down. I learned a lot in the classes I took. And one thing is the fact that people with brains that don't allow them to be what "Society," would call "Normal," have fewer rights than someone with a seen disability. I'm saying we should respect anyone of any beliefs, gender, orientation, and if they have a proven condition, that you cannot see with the naked eye. What she is "Labeling," someone is wrong!
Someone made a point earlier that I'll expand on. Because this woman is now blind, she's gonna struggle much more than she would’ve if she'd stayed sighted. How do I know this to be fact? Because she now has no choice but to use paratransit or other such services (unless she’s rich enough to hire herself a driver). She now has to fight for accommodations due to her disability, the way we all do every day of our lives. Why would anyone want such hardships to be part of their lives?
When she was sighted, she didn’t have to encounter any of the hardships I mentioned. All her senses were intact, she was able to drive; in other words, she had many more freedoms as a sighted person than we do as blind people. Again I ask, why would anyone wanna give those things up? There is no logical or justifiable reason.
At the moment I have more questions than answers. I ask the following out of genuine curiosity. I apologize if my thoughts seem a bit scattered. I haven’t looked more into this condition apart from some Wikipedia article and a few of her comments that appear in news articles.
Being blind has varying degrees. What do people with this condition mean by blind? To some people blindness can mean more than being eyeless. Some people are born blind. Others have vague recollections of what light, color, shapes and so on look like. When people with BIID wish to blind themselves, are they strictly attempting to put their eyes out of functioning order? Or is it their eyeballs (not the actual sense of sight, the ability of seeing) that’s causing them the discomfort? Perhaps the cause of the discomfort differs on a case by case basis.
I think there is more to being blind than simply being eyeless or having non-functioning eyeballs.
There was something said earlier in this thread about certain parts of the eye, such as the optic nerve, being one of the culprits of discomfort for people who suffer from BIID. This is the part of the eye that transmits information to the brain. The human eye extends to the occipital lobe, a part of the brain that never stops demanding data even when the eyeballs are no longer functioning. The mental images will always be there for the person to recollect, regardless of how faded the memories may become over time.
With that being said, I am not an ophthalmologist. I admit that how the human eye works in all its complex neurological networks is a complete puzzle to me. Feel free to correct me if I have stated things that don’t comply with human biology.
But what I cannot wrap my head around is how a person whose major discomfort is the optic nerve can achieve a feeling of wholeness by ridding the body of their eyeballs. The woman in this story who blinded herself seems to have had an issue with her eyeballs, not the actual sense of sight. The reason I say this is that she claims to have accomplished her goal and felt satisfied once her eyes were no longer functioning, and she didn’t feel a need to damage herself any further, that is, as deep as her occipital lobe. She does say that she was unsuccessful in having them completely removed, but she achieved a level of happiness that she could live with once the sensory discomfort (vision, light, shapes, etc.) was out of the way. How much of her goal did she truly accomplish? Do mental images and memory not bother people who are dealing with BIID? Why not?
I wonder if by some anomaly of nature there were another way or organ through which her brain could compute visual data apart from her eyes, would she try to damage that part of her body as well? I wonder if there is an efficient and permanent remedy for someone whose optic nerve is causing them discomfort. It is hard to imagine simply by considering how the brain works with the five senses.
I guess I’m trying to comprehend how people with BIID think.
Where did you get your degree, ma'am? Because, that I can respect, if you know what a Right Mind, is.
Why don't your credits get you a good job? I'll say right now, I don't even know what the right mind should be. And, I won't presume to judge.
Blessings,
Sarah
Chelsea,
This approaches rational discourse, so I'll give it a spin.
You're absolutely right when you say that Jewel is now facing hardships she didn't face while sighted. That's completely fair.
However, guess what she's also got? Happiness. Apparently she's much happier now than she's ever been before, because she feels right with herself. No longer is she being tormented because she feels she ought to be blind, but lives with sight. She has now lost that sight, and she's essentially made a trade. Some hangups that only blind people get, vs. the constant difficulty of living sighted in a mind and body that wants to be blind.
Like I've said before, I don't get it either, but the part where I vehemently disagree with you is where you say there's no justifiable reason for it. BIID is essentially a form of mental disorder. This doesn't mean a sufferer is crazy, but it does mean their brain doesn't act the same way that a typical person's brain acts. They live with things we can't understand. They live with burdens we can't even guess at.
Remember: we aren't talking about a random and completely healthy and mentally stable person deciding to blind themselves one day.
Alicia,
Sorry, but I still disagree with you on this, and quite strongly. You can say that you think her choice to blind herself is questionable...go ahead, I suppose. But disagreeing with her, period? I dunno about that. Unless you're trying to claim that BIID and the like are things we choose to indulge wantonly, then agreeing with them or disagreeing with them is meaningless. I can't agree or disagree with bipolar disorder; the fact is, it happens whether I like it or not. If someone who's bipolar goes and does something I don't like (hurts someone, does something dangerous), then yeah, I'm maybe going to take issue with the action itself. But that's as far as any self-respecting person ought to go. And as for transgender? Don't even get me started. You can't "agree" or "disagree" with transgender people.
And as for having no sympathy for her regarding paratransit or other blind issues faced, let me spell this out for you.
Here's what you're saying:
"If someone has a mental disorder which causes them to harm themselves in such a way that they need help they didn't need before they did themselves harm, I have no sympathy for them."
I'm simplifying it, and you probably don't like that, but at its core that's exactly what you're saying. So if someone was mentally ill and cut their wrists, you wouldn't have sympathy because they apparently made that choice willingly.
And all of this confuses me because I thought I saw in other board posts that you've at least had depression issues. This makes your intolerance doubly shocking. Being flabbergasted, surprised, even upset at a first pass I can totally understand. But saying you have no sympathy, now that she's blind and is stuck dealing with the crap we deal with on a daily basis? That's just hypocritical, really.
hmmm at first when I read this article, I was disgusted. I sent this on to my Mum and she replied that my sister had already sent this to her and asked her to send to me. she thought it was too insulting sounding to me.
Yes, I looked on it as being insulting, taking away resources, and highly unprofessional and worth a sacking as far as the Psychologist is concerned. I know said Psychologist spoke to jewel for two weeks before hand, but I thought that it was their job to try and talk them through such disorders and how to cope.
Reading daigonite's post just then does soften me somewhat but I'm still ultimately confused about my feelings here. Are you saying, daigonite, that there's no medication to treat this disorder?
Nobody should judge unless they've got this disorder I couldn't agree more however.
But is Jewel going to regret her decision one day?
Look people with this disorder need to realize the reason why it sounds so insulting to us because, they willingly took their sight whereas some of us were born blind, while others lost their site later in life.
Well, I have said all I have on this topic accept I don’t see it the same as assisted suicide, nor being in physical pain because of something.
If you are terminally ill, you are just dying sooner than later.
I appreciate the fact this lady has a mental disability, but that disability is still there, plus she now has another on top of it. How has she served herself, or the blind?
For the person that wishes to be blind, I feel they should have to live as a blind person 100% for a year.
1. You have a job. Go to your boss and insist it be made accessible. If it cannot, quit.
2. 2. If you drive, your car should be sold, and mobility lessons given.
3. 3. Wear a sleep shade 24 7, or have your eye lids stitched so you can’t open them no matter what happens.
4. If you still wish to be blind after that year, I give you my blessing.
This lady screwed up, and needed mental support not assistants.
As I and others pointed out, she could have served the blind better as a seeing person. Now it looks as if she’s even more dependent then some of us.
I see your point Shep, but it isn't the same.
I understand she's mentally ill, but she's bragging she's "happier now" If that is so, I have no sympathy for her struggles.
She's claiming she's cured of herafliction, right?
If I mustjump on her wagon and say, yes, you did right, I also must say she's mentally stable now too.
She's better off, right?
Not even.
If her blinding herself was the result of a knee-jerk reaction and she didn't truly think long and hard about it before having the procedure done, then I am inclined to believe that she will regret it. I wonder if that is the case here, though. After all, she was being seen by a psychologist who, I assume, presented strategies for her to cope with BIID.
Whether she wrote off all sensible strategies presented to her and was dead set on blinding herself is probably something we will never know. Something to take into consideration is that an acquaintance of hers on here is saying that she did it to draw attention to BIID sufferers because any other way to help them would not be as successful. So it seems she sacrificed herself for the cause.
Even though I have a screwed-up brain, I wish I could be normal. Wayne, I know this sounds odd, but if I could flip a switch on me, and be normal, and not so sensative, or offended, or have these terrible sad feelings I do, I'd love to flip that switch. I don't know if I'd want to be disabled. I did think the time I rode in this wheelchair when I was seven was cool. I guess, because when I sprained my ankle, it hurt something fierce. But, the pain I have now, the wheelchair doesn't even start to help with. Unless, you can count not falling as a good thing, and I do. I just don't see how it works, but there's stuff I am facing, that doctors are begening only to gently tap the surface on.
On the other hand, two or three times a year, I let some doctor stick a sharp needle inside my bladder, to stop spasums. No I don't like the pain, and I really hate getting up early, so I don't end up waiting for a ride, while my doctor gets to drive home. But those injections helped. I don't know if that's anything similar, but I'd like to research before I make a judgment.
People take Chemo Therapy to get better, even though it puts them in the hospital half of the time. I don't know if I could handle it, but many do. So, I just don't know.
I think part of the problem is the fault of medicine itself. I'm sure that psychiatrist was thinking along the lines of "If painful procedures that hurt as much as help are out there, then this is nothing different." It's a mixed message we get. "Cure the pain, with stuff that thins your blood, and makes you bleed, and oh, we forgot to tell you it might destroy your kidneys."
That's just something like Motrin. I guess I'm still mixed on this issue. I just won't call her names, for blinding herself, cause she wanted to stop the mental anguish.
Blessings,
Sarah
Couple of clarifications:
1. I believe this woman has been feeling ill at ease with her sight since the age of seven. It wasn't a random impulse thing.
2. I definitely think that the psychologist who assisted her probably should've refused outright, given what it was going to do to her.
3. A person who has BIID and wants to be blind, then blinds themselves, technically may still have BIID, but the grand majority of symptoms of the disorder might go away upon that sort of treatment. Thus, what a person like Jewel did is trade BIID for blindness. What she -didn't do was add one new problem on top of another. She essentially used one problem to -solve another, and is apparently much happier for it.
Believe me, I had that kick-in-the-face feeling a little when I first read this. But then I thought about it and started seeing facts...so good on you, Rachel, for being at least a little open-minded.
Ah believe me Greg, I am an extremely open minded person but this situation is not clear cut at all.
No, it's not clear cut, which is why I said I still don't entirely know what to think. Gregg, I'm not offended by your post. I'm tired now, but will re-read your post when I'm more awake, and can think it through, and give your thoughts the attention they deserve. On the surface, all I can say is, I don't disagree with her having BIID, or that she needed help. Like you said, if someone with bipolar takes action that harms others or is dangerous, you disagree with the action. Well, she most definitely took a dangerous action, and now it not only effects her but others, and I'm not sure I do agree with it. So yes, it's the action, not her condition, that I was saying that about. But I don't think I'm making sense at the moment, so it's off to bed for me, and as I said, will re-read and consider when more awake.
I can't pretend to understand how she felt, and while I do think her actions were a bit extreme, I can't be upset at her for wanting to be the way her body feels is right. What I don't agree with is her bitching about transportation, or accomidations, or anything that blind people have to deal with ever day because to spite her disorder, she chose this path. She could have continued seaking out treatment, but instead she and the person that should have been trying to help her get better, gave into those urges and we now know what happened. I do not feel sorry for this woman because she went down this path not thinking about how hard it was going to be, and while its good she is happy, she has no right to bitch about these things because she chose this path.
She's happy now, so that makes what she did okay and completely justifiable? Bullshit!
Of course she's gonna tell people she's happy; she doesn't even think she's crazy, after all. So how anyone could actually fall for those words and believe they're true is ridiculous.
Does her complaining about things sound like someone who's joyous about a particular thing that happened in their life? Not hardly!
As I said before, and will say again, I cannot even begin to understand how anyone can see this woman's story as something to be proud of or enthusiastic about.
She is sick in the head, and she should've received help to turn away from these urges to become blind that she was having. She did not need assistance to further her craziness and actually alienate herself from society. That is exactly what she's doing, like it or not.
And yes, I am absolutely saying that I have no sympathy for her whatsoever. However, I do hope that society as a whole learns from her story and offers to help those who say they have these kinds of urges before it's too late. Because, what this lady's done to herself she can't take back. She unnecessarily put herself through hell, and for what? To be blind and cause herself more problems. *Shrugs* I have never seen happiness defined like that; that's because it isn't happiness at all.
LTE, I will say to you the same thing I said to Alicia earlier. Technically, you're saying "anyone who does something that harms themselves gets no sympathy from me". What's more, you seem to be thinking it was an easy choice made from a rational perspective. it was neither. If it was an easy or rational choice to do as she did, then maybe it's awfully difficult to have sympathy. I could understand it then. But that's not the case, so she has at least a little of my sympathy.
Just remember your lack of sympathy the next time you make a choice and pay for it, and you think someone's being bitchy because they don't have any sympathy for you.
I do agree on one thing you've said, Chelsea, but only one. Rather than pick your argument apart for what seems like the eighth time, I will instead focus on the bit you got right.
There does need to be more awareness of this disorder so that people don't resort to pouring drain cleaner in their eyes or amputating limbs or whatnot. This is something that psychologists and neurologists and such ought to try getting a handle on. Of course, most disorders don't come with complete understanding and a 100% cure rate, but more knowledge on this subject absolutely can't be a bad thing. The more we can stop people disabling themselves by finding ways around their BIID, the better. I do agree with that. This rationale is essentially the same as getting more awareness of other mental conditions so that sufferers have more options than to just be stuck with whatever they're suffering with. I'm all for that.
Like many of you have said, the psychology should have been trying to help her, and yes, she should not be complaining about para transit. I don't feel sorry for her one bit. She deserves it, and about the benefits thing, she's been this way for 7 years now? So this means that she's probably receiving something whether we like or not. I am not sure how to feel about that part, but anyways.
By that logic none of us should ever be allowed to complain about anything.
we've chosen to live this life. We have ways out of this life if we hate it that
much. Why complain about paratransit, you're choosing to go somewhere. If
you choose to put yourself in that situation, you have no right to complain about
it. How can I complain about the bigots in my city? I chose to live here after all.
I could have lived somewhere else. Hell, when you boil it right down, why
complain about how much it sucks to live with blindness? You're choosing to live
with it. If it sucks so badly, why are you still alive?
Besides, its not like we have a monopoly on bad treatment by transportation.
I know so many people who complain when cabs are late, and they're sighted.
Do you really think complaining about transit is a blinds-only club? I doubt
you're so ignorant of the world if you really stop to think about it.
Only from the stand point of I'm blind, and now need better services, is why she can't complain, or can, but gets no quarter from me.
General complaining is different. That is the difference as far as I see it.
You didn't build your city, then decide to bitch about it having 23 streets instead of 22.
.
Seems to me that any one of us who says she doesn’t have a right to bitch about this or that aspect of being blind is really saying they don’t wanna hear it. That to me makes more sense, really. She has a right to bitch, I suppose, and we have the right to say I don’t wanna hear it because this is what you chose. But I wonder, because I seek to understand. Is this possibly a neurological condition of her being overloaded by too much visual stimuli, similar to the person who might want to be deaf because hearing is for some unknown reason a problem? If that’s the case, then I can possibly understand her wanting to be blind. I don’t know because I didn’t go to a very good med school.
But she didn't put together the transit system Wayne. Sure, she chose to
become blind I guess, but she didn't choose to have the late transit bus. So
your point still doesn't really work.
Many people living in and out of society receive benefits and services that, according to their critics, they probably should be denied.
For starters, think of the worst of criminals who have the right to representation free of charge. At tax payers’ expense, they have the right to fire their lawyers, delay their trials, choose how they die, etc. Anyone can produce a long list of such cases: corrupt politicians whose ill-gotten gains aren’t stripped from them, inadequate teachers who spend their time in rubber rooms and yet get paid, the freedom for gun enthusiasts and second amendment defenders to amass an arsenal of military weapons, and on and on. Victim’s compensation is another thing that most governments provide, but there is a long process to determine whether or not each case deserves the benefits.
In each of the abovementioned instances there will always be someone who says such politicians, criminals, professors, hunters, have no right to voice their displeasure with the accomodations they are given or with the situation they have put themselves in, or that it is wrong or illegal, or violates some kind of social etiquette. Yet there are laws in place to protect and help people who at a glance have put themselves in their own situation, regardless of how deserving or undeserving they may seem to the public.
Extreme attitudes closely resembling the kind expressed in this thread are what have created modern lepers out of sex offenders. (Note: I am not saying people on here are being extreme, but that they are coming close to it.)
Anyhow, though I personally believe some among this group should have their genitalia severely and permanently damaged, I know that many among this group aren’t violent or that they have received an unjust punishment. But if such attitudes were ever allowed to rule and be made into law, such people would be forced onto their own colonies, where they would have no access to the civilized world and all its services.
It almost seems as though people who are showing no sympathy toward the woman who blinded herself are a few steps away from completely ostracizing and excluding her, as though she were attempting to enter some elitist blind club whose members are required to have certain characteristics and worldview. Such attitudes are what cause the dysfunction in most societies. If gone unchecked, these attitudes can only lead to social Darwinism and complete anarchy.
All of that’s partly said in humor. But I do think some people on here need to consider as many details and facts as possible about a case and not allow themselves to get carried away by their emotions.
I feel almost as if there's an unneeded dichotomy happening here.
It's as if the people suggesting that we who give sympathy are not thinking things through, or are too soft, or as the above poster said, aren't checking all the boxes required for Jewel to enter the blind club. It's kind of ridiculous.
To be absolutely clear: I am not in favour of what this woman's psychologist actually did. I think that was a mistake. But I do think some sympathy is in order, particularly because the decision to go blind wasn't made on a whim when she woke up slightly dissatisfied with her life one fine morning. This is all to say that yes, I think some sympathyy is in order, but I'm not just a yes-man. I'm not just preaching tolerance at every turn because I can. I have really dug at this and thought it out.
Generally, Cody makes an excellent point about sympathy. Most of the things you do are made by choice, yet you sometimes bitch about them, and would probably be upset if people told you that you didn't deserve the sympathy. We could all use a little of that from time to time, in my opinion. Now, if she goes on complaining about the same thing for months and never tries to find ways around it? Heh...well, she wouldn't be the first, won't be the last, and will likely wear out her welcome. At that point, I think most people would get tired of the same old song...but that, I should say, is true of anyone, from any group, not just this BIID sufferer daring to be annoyed at paratransit services. Whining is annoying, 'nuff said. But not every complaint classifies as whining, and expressing one's displeasure with something does not come with the caveat that you absolutely must have done everything you could to avoid it first.
I am speechless reading this post, to be honest. I had no idea that such a condition could have existed. But I am looking at post 4 here and sticking with that.
Sorry if my message came off in a way that upset people. I think cody is right in saying that the blind community as a majority at least from what I have seen is upset with this woman, and as a product of her actions and seeking media attention, they, myself included don't really want to hear her complain.
I don't want to hear her complain either, but I don't want to hear anyone
complaining. I find whining to be annoying, especially if its something we can't
fix. That being said, i do it all the time, and I listen to people do it all the time,
and I don't know anyone who doesn't. But what we want isn't an issue here. we
can't say she doesn't deserve sympathy or understanding simply because we
don't want to listen to her. we can say we're not going to follow her on twitter to
see her tweets, but we can't say she doesn't deserve sympathy.
We can, and we have said that she doesn't deserve sympathy. Why? Because becoming blind was a choice she made for herself, plane and simple, like it or not. So what if she didn't wake up one day and just poof, decide that she wanted to become blind. It doesn't matter whether this was decided within a day's time or over a period of years/months. The point is that she chose to become blind; her psychologist chose to help her become blind; AKA she, wanted, this, to, happen! You can't make things any clearer.
For the record, lest anyone think for a second that I am in support of the "she has a disorder" camp, I assure you I am not.
The lack of humanity I'm seeing from some people on this board is making me so sad to be honest.
I agree with those who say that if we don't want to give her sympathy, then don't follow her. The idea that she doesn't have any right to sympathy from anyone is just really sad.
She is a human being. With feelings. Unless you are quite happy with other people treating you like shit then I can't comprehend why you are ok treating her that way.
Ok Chelsea, very simple question. If being blind, and having any other issues
you may have, bothers you so much, why are you still living with it?
Well Chelsea only has one way out. Smile.
I don't guess she's ready to take that one.
I don't believe she's saying her personal living conditions are unbearable.
Now as to me. I did state as a human this lady deserves kindness, sympathy.
However, from where I sit, a blind person that had no choice, I don't have much for her only because she chose her place, it wasn't given her.
I don't even mind listening to her bitch, but I'm not moved as I would be moved listening to a person that had no choice.
To me, when a person choses something, and say they are happy with it, what can I say.
I gave away my gift, and damn, you know it's difficult getting to the store.
Yeah, it's like that when you don't have that gift you know.
I'm not going to follow her, or raise funds, or march in her parade, if you understand me.
I don't feel like I'm wrong for not wishing to give her praise for her stupidity. Sorry folks, but that is how it goes from where I sit.
Now, if she needs, I'd not see her suffer, and I have stated she should be able to receive all the benefits as a blind person.
A pat on the back, nope, not from me.
You can't get this, or that, due to being blind, neigher can I, but you didn't have to have it, I did.
I'm slightly confused here Wayne. ARe you saying that she can get aid, but
she can't get a pat on the back? If that's what you're saying I completely agree.
She doesn't get a pat on the back for being blind. She gets one from me for
being courageous enough to fix her situation, but not one for being blind. For
that matter, neither do you. So you're blind and you make up for that. Big
fuckin' deal. Do something impressive and you'll get me patting your back.
Make it really impressive and I'll buy you a drink and invite you to regale me
with the story. But being blind and going to the store, hell no.
But, on the other hand, if you're saying she chose this, so she doesn't get to
complain, then I'm afraid we disagree. Because we all chose this. People with
vision loss choose not to have it corrected. People with total blindness choose
not to end our lives. WE all choose to stay here and indure this fight because its
what we feel we have to. But we're still allowed to complain. Just like this girl is
allowed to complain. Because, guess what Wayne, she didn't choose this any
more or any less than we did. If she hadn't blinded herself, she'd have been
miserable. So how can you say she chose it?
Wow I really don't know how I feel about this shit now.
I'm not just a hater. But I remember when pretty much everything wasn't what you call accessible. People complained about having to give us the minutest of things, and you had to run miles just to prove that you needed it, couldn't find a 37-step work-around, weren't just vying for attention.
It's a hell of a lot easier being blind now than it was in 1982.
That being said, I was wrong in my early 20s about transgendered people, so guess maybe I've been wrong again about these transabled people, much as I detest the special snowflake stuff you find on Tumblr. It's not right for people to be able to just go claim victim and privilege against the lot of us who have had to beat our heads and scrap for everything we got.
But if this is a bona fide condition, then it's a bona fide condition. I'm pretty weak on anything medical.
Daigonite, you ever tried to use Voiceover on your iPhone, or TalkBack on your Android? Do that with the Privacy curtain on. Use your computer, and I mean programming too, with just a screen reader and put your monitor away.
Why do I say that? Transgenered people go through a phase where they live as the gender they want to identify as, and this is in part to see if this is really what they want.
Those are safe ways for you to do it. You could learn Braille, and in fact should if you're programming without eyes, IMHO, although I know a couple stellar developers who can do it all by speech. I can't, but they can, so it proves it's possible.
If you can put on dark glasses and a cane and walk around in a neighborhood where you're not known, go into stores and ask for help, etc. that's not technically taking advantage. I've heard people who teach the blind have to do this anyhow. But you'd be talked around, have to wait until someone can help you, get someone helping you at the store who can't read because they'll fit the mentally-impaired person with the blink to put the pair of gimps together, even though what you need at the time is someone who can actually read and visually analyze their environment coherently.
Try and figure out what people mean without any body language cues. Try and figure out whether the growling, barking dog tied to a post outside a shop is friendly or angry without seeing them. See what it's like on a windy day with tree branches blown down to cross streets blind.
I'm not complaining, just laying out a roadmap for what you could expect.
I'm not a shrink, hopefully someone who is can weigh in on this stuff. Just a plain old average working guy who happens to be blind and deals with this shit on a regular basis even when doing something as simple as suiting up, stapping on the gear, and heading out to do a field exercise as part of my volunteer efforts in the Disaster Response community.
blindness is so cool! Everyone should want to be like us! It's about time someone enlightened the masses.
This is the result of an unchecked Helen Keller fixation, I just know it! LOL Schools may wish to rethink that mandatory
reading.
Okay, getting serious, now. Why is this just now in the news, if Jewel's been blind for years?
Does her psychologist still have his license? Will he be treating other such cases?
When's she going to sign up and join the Zone? *grin*
Rdfreak says what was one of my first thoughts: she's probably going to regret this, someday. Work will be hard to come by.
Aging will dull other senses, and make travel more of a challenge, just to scratch the surface. Or she will just grow
older, and the issues that seem so crucial now won't be so important. How old is Jewel?
Chiming in as one who is, for the moment, thoroughly disgusted and baffled by this story. I'm sure if I met Jewel, I could
muster up some level of politeness and probably even empathy, because knowing someone personally has that effect. But from
my distance, this is sheer absurdity. It bothers me so much that I doubt I can be coherent in explaining why, but what the
hell...
Sympathizing with the frustrations of daily inconveniences, like para-transit and such, yes, I can do that. But
understanding *why* someone would intentionally blind themselves is completely beyond me.
My first reaction to this story is one of anger, upset. In large part, people who don't live with blindness aren't greatly
sympathetic to our difficulties. I can't count the number of times I've had a bad day, indulged in a littel self pity due
to the annoyances or misunderstandings blindness brings on, only to be urged to stop feeling sorry for myself, just deal
with it,insert typical pep talk or useless religion-based coping techniques. the core of the message being, you have this
condition, so accept and stop making everyone uncomfortable by whining about it; yeah, even the least little bit of
expressed aggravation or sadness is taken as whining and self-pity.
But somehow it's perfectly acceptable for a healthy, non-disabled person to claim she has a disorder, and so we should all
bend over backwards to understand her feelings. Why? No, not me, as unpopular as it may be, I just can't.
I strongly believe I should have been born a sighted person. Poor me; if I was sighted, I'd be so blissfully happy! Can
someone fix that for me?
Thank you for your post, VioletBlue. Glad to see someone else has their head on straight about this issue. And, good point about the fact that this pathetic story is just now making the news, when this lady's supposedly been blind for years. That makes her lose even more credibility as far as I'm concerned.
Personally, I have to side with the people who are calling this girl a nutcase in this particular instance. I see no need for her to get any level of sympathy from anyone for her condition, nor do I see any reason why she should get any of the special benefits that blind people get. Speaking for myself and other blind people I know, I personally would be happy to forego any of those special benefits just so I can have sight. I'm sure I'm not alone in this. Why, you ask? Well, as far as I know, a vast majority of people don't become blind by choice. They don't pour drain cleaner into their eyes to become blind, or stick something into their eyes so that they can make them no longer work, as it were. If this is truly a disorder, then the psychologist...any psychologist with any ounce of sense should've tried to treat it, not help the crazy woman go through with it.
Someone in an earlier post suggested trying to live like a blind person for a while before actually going through something like this, and this would've probably been a good method for the psychologist to try to pursue. If the girl still wants to become blind even after the trial basis, then...maybe she should be committed, just like other people with severe mental disorders.
Woo hoo to the last post. Plus, who "identifies as" blind, and how all diggety fuck would you "identify" as blind? Blind has a dictionary and legal definition.
People trying to say the body thinks a part should be there or not. I don't understand shrinks and I guess I never have, only been to one of the counselor types when the Wife insisted and went with.
Fuck, the hard sciences / programming, engineering, etc. is so so much easier to even comprehend let alone prove.
And, I get more piss the more I think about this, because most of us work really hard to not use anything extra, to prove we're not asking for something extra, and yet someone here comes along and gets the victim card. Diversity academics pretty much shit on disabled people and give it all to trans-furries instead, but they're gonna give this chick the world, the sun, and the moon.
Trans people -- for real trans -- I called it; Now you're under the bus like the rest of us turds because lobbies need the newest crowd to parade around.
She'll be under the bus too eventually. Once something more comes along they can parade and get social studies grants for at universities.
Sorry to go full wingnut but Jesus fuck 'n' ay it is what it is. And someone's gonna get a big grant from the government to write papers on this shit and call the rest of us real people dealing with disabiulities * and working / helping our local communities * ... they'll call us phobic.
They already call this chick inspiring, courageous, etc.
Oh, I love you now VioletBlue
. Lol
You approached it with a sense of humor. Smile.
But, shame, you called her crazy.
*sigh*
Well said Leo and Mad Dog.
Leo: In the past I have claimed I'm not disabled; now though, I realize the ridiculousness of that particular statement. I am disabled and so are you; the nutjob in this story is neither courageous or inspiring for making herself blind. You and I did not make ourselves blind or otherwise disabled; this lady did. That is the difference between us that many here fail to see and acknowledge.
I have only one thing to say here.
I don't think it's right that a psychologist did this, especially after only working with Jewel for two weeks. I believe that there is a vast difference between having gender reassignment surgery, and what happened in this situation.
Only one person said, "ok, you should do this." From what I understand, when someone decides they would be happier being the opposite gender, they have a team of professionals consulting with them.
So who is this lowly psychologist to say that he can do something that is medically unsound, in an environment that probably isn't sterile, and, frankly, probably doesn't even know what the hell he's doing?
Furthermore, the article states that, after it was done, the psychologist escorted Jewel to the hospital. Why the hell didn't the doctors question what happened? Why didn't they wonder why someone who works with her in a professional capacity was involved in the "accident?" What explanation could they possibly provide that wouldn't raise a lot of questions, and possibly even criminal charges?
To be honest, I don't care that she chose to do this. It's not my business. I don't understand why someone would want to intentionally disable themselves, but I'm not even going to touch that aspect of it. What really and truly horrifies me is that someone would harm one of their patients and feel OK about it. That is just so wrong I can't begin to contemplate the rage it causes me to feel.
My question is for the shrinks, anyway. I mean, you don't find a lot of competant folks out there. See, they used to worship the Antidepressent, and no matter the cost to the patient, they'd dope you up on all this junk. Well, that stuff almost killed me. But, why didn't this person actually go to a doctor an not who she went to? They have to have support groups out there, for everything. Now the leader, if it's professionally done, has a lot of responsibility. And, you guys say she's been blind for years?
I have another qyuestion for you folks, that's gonna really make you guys wonder:
There's a gal in Eastern Washington, who claimed she was African-American. Turns out she was lying.
Maybe she is the kind of person to make this stuff up? And, look at the attention she's got. She's a freaking hero! Look at me! Bla!
And, so you call her crazy and all that. How about the Zoners with mental health issues? Are the rest of us "Fucken Crazy?" I doubt it. I take a pill that keeps me from losing my cool. So, since I'm correctly taking the pills, are the rest of us just "Fucked Up?"
Blessings,
Sarah
Hey guys, I also have a mental disorder. Some days, I dance butt naked around my bathroom with my earbuds blaring and I imagine I'm a superstar. I hear the voice, whoever it may be, through my earbuds and I imagine I'm her. Or sometimes him. Ain't that a kick. Now. Who's gonna starve me to near death and help me fund numerous plastic surgery procedures, reshape my vocal chords to make me sound like a rock star, etc. Because guys, I identify with superstardom. I want to be whitney houston. Really. I think I can make it happen. Especially now that Whitney's actually dead. Oh yeah, guys, now that I think about it, I also need a surgery to turn black. I'm white dammit, and I can't be a superstar with an amazing voice until I'm black, and skinnny, with huge boobs, and... and.... and...
Yeah, my mental illness is very serious and very urgent... I suffer from WannaBeAStarItus. I just feel, in my mind and in my body, like I need to be a superstar. I've assimulated to it and everything. I've given concerts to thousands of people in my head... I've broadcast shows from my shower stall. I've been struggling with this since I was about seven, so I'm sure I want this. Very sure. And I could also use the money. So....
Which of my dear normal blind friends is going to start a kick ass kickstarter campaigne for me. Let's make me happy. Let's make me a black superstar.
That's a little flippant don't you think Bernadetta?
Bernadeta that's actually pretty funny.
People are saying "Her body, her choices." Fine, and she pays for it. Seriously. You can't compare this to, say, someone engaging in self-termination if they have an illness or something.
The reason is, the person taking their life is not burdening the taxpayers. Like it or not, any of us who works and is blind could lose our jobs and be on Disability. Much as I'd like to be able to, I wouldn't be able to just pick up a cab driving job, a stockroom, job, etc., provided my employer no longer needed my services. So even if she did have a job when she went blind, there simply aren't any guarantees she'd keep it. Shit happens. And when it does, painful as it is, we blind bats end up having to run the risk of using the illusion they call entitlements -- till that stops for whatever reason.
And yeah, Chelsea, I agree, we're disabled. My friend with MS is disabled.
But I don't feel like I should have been born a blind person or a sighted person, although if I could pick I'm taking the sight plus the midlife motorcycle that would no doubt give the Wife more fits.
But I think this "identify as" popular trendy thing is kind of over the top.
You know when I ID myself? When going into secure environments like for field exercises in the volunteer effors I'm involved in out here. Or when I would go pick up my daughter from school I'd ID myself as her dad.
I'm not being a complete money-grubbing pig here, just honest. If people have such incredibly near-spastic chimp reactions to accommodating us in any way most of the time, how are we supposed to support the deliberate manufacture of a new one of us?
People second-guess our intentions all the time now, but I'm betting they'll third and fourth-guess us once this becomes the next thing hipsters take to. not because people hate us, but because they and we do what animals do: protect the resources that are ours, and are suspicious of those who seemingly come along from the outside and take more and more.
I haven't been in this thread for a while so pardon my slow responses, here are a few things I'd like to clarify.
RDFreak - There are NO treatments specific to this disorder at all. I think Jewel's main reason for coming out and showing this is because there is no treatment and it may help people who suffer from similar feelings
to realize that they aren't just "insane". It hopefully will stir interest in cases like Jewel's and mine and help us actually be able to obtain possible treatment through encouraging research.
While I'm currently in a stable state, it isn't to say that the condition isn't difficult to deal with. Almost every day I think about wanting to blind myself in the frustration of my current discomfort. It feels wrong all the
time and I constantly think of ways I could get rid of it. Most of the time it is subtle, in the background, but some days it gets so bad that I just want to slam my head into a wall and be over with it. It has lead to
extreme depression and anxiety because I know that I am constantly judged for it. I try to be as transparent as possible to try to avoid this judgement.
Identifying as a blind person isn't really the best way to put it. A better way to put it is that my body doesn't feel correct unless my vision is somehow cut off, and the less "artificial" it feels the less distracting it is. For
this reason I often opt for using contacts, although I haven't used them in a while. This could be due to a variety of things, although it's not known what causes it specifically yet. Similar symptoms can rarely show up
after strokes, although usually this applies to the limbs - which suggest the disorder is neurological in origin. In my opinion I do believe BIID is likely a congenital condition in the brain that is worsened by a variety of
psychological factors and experiences. Because of this, the effects may be irreversible but a possible treatment may exist to patch over the neurological problem, while therapy may help relieve the psychological part
of the disorder.
As I said earlier, one way to look at it is if you were born with a third arm but told that surgery wasn't allowed because it was unethical. If this was the case, then you would surely be stressed out all the time, even if
everyone acted like you were normal. The discomfort of not feeling correct can cause serious issues. The problem is that this condition has caused my brain to assign that feeling to something that should work
properly.
In regards to the posts claiming that "oh you can just make up a medical condition whenever" - the problem with this is that people with BIID want a treatment for their condition. The reason why they resort to
harming themselves is because literally nothing else currently works. As I've stated previously the condition is very stressful and builds up on you. It's very easy to assume that a "mental condition" is someone simply
making up something but I find that this excuse is often made when someone cannot empathize with a condition. I hope that the way that I have worded how it actually feels to live with BIID can help people
understand that it is a genuine condition and regardless of whether or not Jewel is lying about her condition (which I firmly disagree with as someone who frequently talks to her), I can assure you that I am someone
who deals with it every day. It's not about "wanting to be cool" or "different" or "get special privileges", it's a strong desire to actually physically change your body. I honestly don't care about any of the other stuff.
Honestly, if I had it my way, I wish I could be considered partially legally blind. I don't want benefits from social security checks, I already have a job and I fear losing my independence - I would do anything to live a
completely independent life as a blind person, but I know that isn't possible. Instead, I wish I was legally considered partially blind because then I could have access to certain schools and educational things such as
blind schools and therapies so I could learn how to be an independent blind person. This actually may serve as a useful form of therapy since oftentimes my frustration comes from the fact that I don't have direct
access to these things and I think, "maybe if I just blinded myself I'd finally be able to do things the blind way". If I were allowed to live as a blind person, with contacts in my eyes, while preserving my vision, I think
that would halt the progression of this disorder at least for some time. However, I don't have this and because of this it adds onto my problem and thus makes it far worse. In addition, a legal classification would give
me protection to allow me to exercise these therapies in public and avoid legal issues or discrimination at the work place.
I don't believe that the psychologist was in the right at all. I think that "transition" - either for transgender people or people with other identity disorders - should be reserved as a last resort. It's entirely possible that
these issues are caused by other things and may be resolved elsewhere. In addition, many people with BIID can function without losing the affected limb or sense depending on how severe the BIID is. Management
should always be preferred, but I can't speak for Jewel's psychological condition at the time of her blinding.
I mean, while I disagree with a lot of the opinions presented in this thread, I feel that anyone is entitled to believe what they want to believe. But I want people to please consider what it actually may feel like to have
this condition instead of making their own assumptions about it. I am completely open to questions - feel free to ask me anything. Even if you don't trust Jewel, I've been a member of the Zone for several years now,
I have never lied about my sighted status or try to take advantage of the visually impaired and feel that being transparent and making people aware of my condition is honestly the only right thing I can do about this
situation.
Daigonite,
I don't think you are trying to be cool. And maybe Jewel isn't either. But just like there are now so-called trans-trenders who claim they're transgendered just to get points, you guys may end up dealing with these trendy types. I know a few real trans peple who are as rabid against this, as the gay guys are rabid against being the "gay friend" accessory to young women.
I have read and reread what you said. I admit I don't understand. I always thought if you had parts they would be yours ... if I had a third arm, I guess I'd have assumed to be used to it. Unless I woke up one day with one.
I get what you're saying about government resources re: blind training. I've never been to a training center, you don't have to go. There were things growing up that I didn't know how to do. Anyone who is honest, blind or sighted, must admit to that.
But there's a lot, including technology, that you can do. Use your smart phone like a blind person does. Around your house, when you pour yourself a beer or mixed drink or coffee or whatever, do it like us: Listen to the sound of it filling up the glass, put your finger in the top, etc.
There's a ton you can do safely around your house without sight. I wouldn't go outside and cross streets with it.
You could get showed how though, maybe by someone at a local university taking blind educator classes.
I know people who went blind who have taught themselves to read Braille using the Hadley course or some other free Braille course online.
It's all possible for you to do and experience. Plus, if you do go out in blind getup with a cane and shades, I'm not sure that would be wrong, provided you would remove the shades and use your eyes if you got stuck.
Actually I think it's got to be easier to fake blind than it is to fake wheelchair, or other gender, etc., until one could transition.
Somebody fully sighted could easily pretend to be me on a weekend: suit up, put on the packs and gear, etc. head out on foot with a cane and do a field exercise or set up a station at a community event and all that.
Using the phone with the VoiceOver, or writing something down with a slate like I do at those events when outside, that would take you some learning but you could teach yourself that.
Look at it this way: Military people do, it firefighters do it, I mean function in near or total darkness, and they do it as well as we can. They're the studs in that department. So you could.
I know there's a ton I don't understand about it, and I respect you for not wanting to bog down the system (such as it is). Hell, I don't either.
Hopefully one day more solidified evidence will be found to show exactly the inner workings of the condition. I definitely still have a lot of questions despite my attempts to view my condition as scientifically as
possible. Honestly I don't really care if people "understand" it at all, I only really care that people recognize that it's an actual disorder. Honestly at the end of the day I don't really care if people feel one way
or another about the disorder, because I'm not the disorder. Although it does make me sad when they ignore my accomplishments and goals for the blind community over the fact that I wish I was blind.
The "transtrenders" are honestly annoying as all hell and frankly dangerous to themselves and I worry about them. I noticed in the last few months a bit of a surge of people claiming they had BIID have
appeared and their symptoms don't really match up. This worries me not only because these people may actually harm themselves and have nothing come of it (and not only this but encourage each other to do
it) but they purposely make themselves feel negatively about who they are. When you have BIID it's a nightmare, it's not a competition to see "who has it worse", you have to deal with a frankly annoying as
hell problem all the time that you can't really do anything about. And of course, there's the obvious - transtrenders are really good at making these issues seem very invalidated.
Regarding the transgender community, their hatred of us is understandable but annoying and impedes progress of scientific research of BIID and even GID. For example, GID was renamed Gender Dysphoria
due to them not wanting to be called a disorder, but quite frankly regardless of the cause of gender dysphoria, it's still a disorder. I kind of feel that the transgender activism community tends to put their
activism before research which, while understandable, does impede on other individuals with similar problems such as myself. In my opinion I honestly believe that gender identity disorder and body integrity
identity disorder are related, and the former may simply be a common subtype of the latter.
Hmm, interesting. I have taught myself some blind things but I also hesitate because of my own insecurities about having to rely on something that makes me look different. Honestly if nobody cared I would
probably do a lot of stuff by now. I have a copy of JAWS but I haven't installed it because I keep trying to lie to myself about these issues. Same with my cane, and my talking clock, and other things too.
I mean, here's the thing nobody really ever talks about - the emotional side of this crap. You go back and forth and wonder if it's really happening, if there's really something deeper going on. You don't really
want to admit that you have a problem and you try to deny your desires to try to be normal. I'm still fighting that, tooth and nail. It drives me crazy sometimes. Some days I just think, maybe I am going
crazy, maybe this is all just some game... and then it hits again. It really is the most annoying and frustrating things to deal with in my life because of that. I have managed to gain some skills and I do know
some characters from braille, I am making slow progress... so maybe in a few years I'll actually be in that position.
But there's also the fear of people noticing something strange about you. I mean, look at it this way - I have to drive a car in order to go to work. But if I go and use a cane after that, it will immediately spark
suspicion and discomfort in people, especially since they know that I'm not actually blind. I feel the need every day to use a cane and there are times that I've actually walked into things at work because I
close my eyes and try to just deal with it without a cane, because I'm locked terrified of people seeing it and judging me for it. It's less of an issue for things less conspicuous such as the computer, but yeah.
And regarding the computer, my life is in a position where I don't really have much time at all to sit down and . This may sound like I'm talking lazy, but imagine saying to your manager or friends - "I'm sorry,
I can't go and do that, because I have to learn how to use the computer as a blind person". Oh, but you're not blind, so why do you need to do that? This on top of my own "going back and forth" position makes
it honestly really difficult to deal with. Should I spend an hour of my time trying to learn how to do this accessibly, or should I focus on trying to finish this code? This is already on top of the anxiety and
depression I already deal with.
It honestly feels like I'm being pinched, like I'm trying to deny to myself that this is even a problem, because I have a lot of responsibilities now that I feel like if I just say, "lol let's just be a blind wannabe".
But that feels like I'm making excuses. I feel so pressed between wanting to do what I feel like I want to do and being normal and a regular member of society. Sometimes it really feels like if I just blinded
myself it would be better just because I wouldn't have to deal with this double life bullshit. I mean, I know that I really do enjoy it. I pretend to be blind in small intervals where people won't notice. But I freak
out when I bump into something or trip, or can't find something - not because it's annoying (even though it is) but because I fear other people are watching and I can't see them, and I'm worried that they will
judge me for this desire if they were to find out.
I'm not sure if this really coincides with anything jewel went through but that's what it's like for me. It's a real fucking pain in the ass I'll tell you what. And this isn't to say that the challenges that the blind face
are not challenges, but we all have stupid crap we have to put up with, and in a way, a lot of the challenges I face are because of the stigma that blind people face themselves.
I can see that. I would say don't talk to medical people about this. Many of them are not terribly fond of us damned bats anyhow, and you really don't know what you're getting.
I know this isn't you, but on Facebook we were joking about someone goes into a hospital in order to go blind. When they go in, everyone talks to them normal, they give the insurance card, their condition / physical pain gets taken seriously, etc.
Once they're done with the surgery, now blind, the medical staff is now stunned this person can wipe their ass, asks if they have a government insurance card, says the pain they're experiencing is all in their head, and now won't talk to them anymore but only talks around / about them like they're the family dog.
I'm not making light of your thing, sounds difficult to deal with. And yes being second-classed is going to be harder to learn to deal with than any skill. Anyone can learn a blind related thing, and you don't have to learn everything, just some for when you squeeze in a bit of time to act it out, if that's what they call it. The rest of us drink booze, smoke a little gonj, what have you. If you can figure out how to do it without jeopardizing yourself, just little things, probably you'll be okay, but you're right, not at work. At least not until you do like I do and telecommute. Which took me many years in the industry before I got to that point.
But it does seem unfair for people to second-guess your activities programming and doing other things for the blind community. I for one don't do that. I try not to assume though I probably do some like anyone. I can make an ass of myself on accident without thinking about it, so.
I do work with a few researchers but outside of that I really don't like getting involved with doctors. I spent a lot of money trying to "do things the right way" and I really didn't
have satisfying results. The first therapist didn't acknowledge my history of this disorder at all and had some serious privacy concerns; the second was alright but her therapy
didn't help and so she targeted my other issues, not my BIID. The other doctors have either pulled up blanks or tried to diagnose me with something I know I don't have (I'm
sorry, but you can't convince me, someone who is fully independent and goes full time to an office job, that I'm "extremely delusional" or "extremely unstablely bipolar"). That
was a fucking mess.
Haha, if you went to the hospital and asked to go blind they'd do something else to you... as I found out. I was lucky and got out, but if that psychiatrist didn't go and punt that
stupid psychologist I'd probably still be in a mental hospital.
No need to take anything personally, I mean a lot of the things I said really apply to society as a whole. The problem with stories like this is that they fail to take into
consideration things like that. They just focus on the fact that they want to be blind/are blind.
I mean one thing is that I try to look at things positively. For example when I get frustrated with a program because of my BIID and I can't use it blind, I think, how could I make
this accessible? In a lot of instances I don't have access to the source code so it's a dud, but in other cases I've written documentation so that way I could make it accessible. I
have a few projects in the pipeline in regards to that.
Now only if I could get over my depression in regards to everything I'd probably build it out! lol. But in all seriousness, that attitude really bugs me because it undermines
probably the only effective coping mechanism I have for this stupid thing.
I guess it is kind of weird though. Why does the sighted population seem to act like blind canes are exclusively only for blind people? People like me could benefit from being
allowed to use them without legal troubles (in fact in some places you can get a fine for it!), but there are other cases too, such as sensory problems. Sign Language was originally
invented for the deaf but was eventually adapted so that non-verbal autistic people could use it too to communicate, but it seems like blind stuff is just too taboo for people other
than blindies to use.
Daigonite, I understand your frustration, in a way. I actually have medical problems, and people doubted me for years. Suddenly, I'm full-grown, and they found all kinds of things that if my mom had listened to the school, I might be better off.
However, I'm left defending myself, because people say stuff like I can hear some things, and not others, so they assume I'm faking it. Well, it is real, and I understand why you are so honest.
I wondered, because someone said Juel was getting money for the artical, and that's why she was doing this, for money. But, listening to you honestly tell your story, I begin to understand.
I'll try to send you a private message later, because, I feel lest trusting of a lot of blind people. It's not themm always, but the way they were raised and the judgments.
Blessings,
Sarah
There’s something rolling around in my head that I don’t know that I can get a handle on, so I’m gunna free-flow a bit and ask questions and postulate and ponder a bit. It’s probably bound to come out wrong, so bear with me please.
So, the whole wanting to be blind thing. I still don’t know if I can wrap my head around it. Not because I want necessarily to be sighted. I’m pretty neutral most of the time about that, to be honest with you. I mean, I can understand wanting to be blind if the type of emotional/neurological complaint is that perhaps you’re wired such that sight is too much of an electronic or neurologic overload for you, and you just function a lot better without all that stimuli. The best way for me to analogize it is this way. If I found sound to be overly stressful to the point that I preferred silence, I suppose deafness would be preferable to all that noise. But then, I suspect without knowing that I would first have to have been born sighted so that I could more easily adapt to deafness, assuming that my neurological condition, if such it was, could only be cured by somehow causing me to go deaf. In that way, I could understand this person’s wanting to be blind. I’m still unclear about whether or not this was the reason. But assuming it was, calling her crazy or stupid or any number of things is simply in its own way crazy and stupid because it only proves that the vast, vast majority of us simply don’t understand such a neurological condition. IN that vein, because we don’t understand, I suppose it’s easier to criticize or ridicule. Then we dcon’t have to ponder what it might be like neurologically or psychologically.
What bothers me is this. If it’s not a neurological condition and this person wanted to be blind because she thought we were or are somehow emotionally, socially or psychologically different from the sighted and wanted somehow to be one with us, I have to say that’s a little insulting. I’m not sure about this and wish someone would clarify this. Because most of my life has been around other sighted people. Growing up, the vast majority of my friends were sighted. The vast majority of people I grew up with accepted me as an equal and didn’t dwell overmuch about how different I supposedly was because I happened to be blind. Sure, I experienced life differently, but I also experienced it much the same way as your average sighted human being. I don’t think I behave significantly differently than your average person who happens to be sighted, although frankly,, in some instances, I have found that some blind people that I have known have been awkward socially. I also think that some sighted people I have known have over-stressed my blindness to the point where hanging out with them became tedious and I found mmyself well rid of them.
So, what I’m questioning is this: Does this person think we blind people are somehow more courageous, more noble or somehow more interesting as people? Because I got news: Overall, we’re not. Some of us are more courageous than others, but blindness in my view has nothing to do with the price of wool in Spain. Some of us are assholes. Some are more spiritual than others. Some of us are, to coin a phrase I heard a lot in college, social gimps. Some are pretty matter-of-fact while others are the warm and fuzzy type. In short, I don’t think blindness has to play as great a role in the kinds of people we are as some would have it. So, I have to wonder: Does this person tend to hold to the belief that there is more to admire about us as blind people than there really is? I keep coming back to the same theme: I just can’t wrap my mind around some of this stuff. Explain, please.
Guys, I just wanted to tell you that my psychologist says I could have something called KATDWMD (Kill Anyone That Disagrees with me Disorder). No one has probably heard of it yet, but I wanted to bring attention to it because I believe the more I might educate people, the more likely I might be to find a cure for this frustrating disorder. Since many of you may disagree, and this disorder could be a very real part of my life, is everyone okay with my KATDWMD possibly taking control? My counselor says that those of you who have disagreed with me can help me by immediately providing your home address and hours you will be there (JIC). Your cooperation and help would be greatly appreciated. See you soon...maybe!
So chelslicious, are you going to cite the sources on those claims? :^)
I can't speak for the woman in the article but I guess I can explain it like this.
For me, yes and no. I know for certain I have issues with sensory integration and
the most difficult is visual. I also know Jewel suffered from photosensitive epilepsy
so it may have also made the condition more intense. However, fundementally, the
sense of discomfort doesn't come from a sensory overload.
@John This is going to sound a little weird, but...
There is a sense of "wanting to be like a blind person" but less in the sense of
viewing blind people as different. In fact I would argue that I don't really see blind
people differently at all - because I, in a really weird way, kind of already view
myself as one.
Not in the sense of me claiming I'm blind or anything. I know I'm not physically
blind. But I constantly feel like I should be blind. The actual disability has very little
to do with it for me; for me I do idolize blind people in the sense that I find the way
that they do things fascinating. To be honest, I'm jealous of that.
And it's true that I can do things the blind way as a sighted person, but that jealousy
is rooted in the fact that person is blind and I'm not. In the back of my head I keep
thinking that something should have happened by now, that this should have gone
away, this should have happened by now. But it hasn't and it sometimes really
fucking hits me hard.
It makes me feel like shit. I feel gross about it. I wish I didn't have to feel like this,
I wish it had already happened. I wish that I could help give any blind person their
sight for it, I feel so guilty about this, and everything I've tried to do to make this
feeling go away has failed.
Sometimes I do think that if I pretended to be a blind person in public, with my
contacts in my eyes so I can't "cheat" and just go on with my life as a blind person
instead of dealing with these feelings all the time would be better, but there's no real
feasible way to do that right now. Because I have to drive a vehicle for work, I can't
go between the two because of being conspiciously not blind.
I understand that this is really difficult to understand and it's really difficult to
explain, so pardon if I'm not making any sense.
My theory on why these feelings exist is that there was some sort of malfunction of
the integration of my sense of sight into my identity. If not properly integrated the
"sense of self", the brain doesn't properly integrate the sense and it feels foreign or
alien. This idea behind sense of self is believed to possibly be neurological based on
the study of transgender and motor BIID patients, but blind BIID patients haven't
been properly studied.
Of course it's just a hypothesis, research is currently being conducted to understand
how to classify the disorder and possible neurologoical causes.
See, that’s the part I don’t understand. I mean, I don’t idolize the sighted. In some ways I don’t understand some of them, but I don’t admire them for how they do things. I guess I’m too grounded in the idea that this is one world. There are blind people in it, and there are sighted people in it. Except for that difference, we should regard each other as equals, and as neutrally as we possibly can. I don’t understand the fascination, really. I walk with a cane. At this point in our history and world view, that shouldn’t be particularly fascinating. So, I have to ask why might that be fascinating? I don’t read the same way sighted people read. Either I use a screenreader or Braille. These are tools that enable me to be as independent as I can be. But as okay as I am with the idea that these are the tools that I have to use, along with the cane and the fact that I have to use my ears as eyes when I travel or my fingers or other things to feel what I’m doing when I do things like cook or clean or whatever, I have to say that there are times when it’s irritating to use these tools because they set me apart from the so-called normals. Most of the time I don’t know this unless someone tells me how fascinating or different or amazing it is. And I have to say that this is one of the things about blindness that’s annoying. Because it’s not even about blindness itself, but about others’ reactions to it. Standing alone, being blind merely means you can’t see. Being that you can’t see, you have to do things differently than someone who can. But blindness doesn’t stand on its own because you have to deal with other people’s reactions to it – what I call other people’s stuff. Some of that stuff includes hero worship; being told you’re amazing, courageous, inspirational. Not to be unkind or disrespectful of the condition I guess you have, but it sounds to me like you’re not that mmuch different from the people I sometimes meet who tell me how amazing, inspirational, la la la, I am. The only thing that probably sets you apart from the rest of them is that you actually want to be blind. And that’s the part that I can’t quite wrap my head around. Because first, it seems that you’re setting us apart from the rest of the world when it seems to me we’ve got enough people doing that already, and then you aspire to be one of us. Is this some sort of hero worship thing going on with you? Because I have to say, I’m really, really tired of that sort of thing. I mean, I’m trying to understand, but whether or not I’m justified in feeling the way I do, I can’t help feeling a little insulted. Speaking as one blind guy to a sighted individual, I don’t want you to give me sight. I don’t want your admiration. I don’t particularly want you to find me fascinating. What I want is for you to regard me as an equal. Right now, I’m not sure you have that capacity.
I don't really think you understand, because what you're describing is not really how
I feel at all.
It has nothing to do with the tools at all. First off, I had these feelings from a very
young age, before I knew anything about how blind people are able to independently
function. To me I knew absolutely nothing about blindness - I didn't even know blind
people used a white cane until I attended driver's school. Despite this, I at a young
age still had this odd feeling that I was supposed to be blind. This was with the
It has more to do with the sensation of being blind. Yes, I do think it's interesting
with all the blind stuff but it drills down far deeper than that - the reason why I'm
fascinated by the blind is because they have what I wanted this whole time, and
they're showing me essentially how to do it and be independent as well. It's like
having a bunch of friends teach you a new game that you can all participate in.
I'm not really sure how a fundemental desire to want to be blind really ties into any
sort of attitudes that you're describing - yes, fetishizing someone because they're
blind is one thing but I'm not doing that - I'm at worst jealous because they have
something that for some reason I want but they have, and as stated previously I'd
gladly trade. I idolize what they do because I wanted to be that way and they're
basically showing me how to do it.
If you want to perceive it as me viewing you as somehow fundementally different as
a person, that's fine, I don't expect people to understand. It's extremely difficult for
me to precicely word exactly how I feel and it's understandable why someone may
feel that way. I also understand the hostility towards sighted people. But honestly, I
don't really view blind people as any different outside of their needs, which is
fundementally their only difference. I want to personally have what you experience
but I don't believe such a thing defines who a person is, simply how they go about
their lives. I mean look at it this way.
I can't help but be peeved by the fact that you feel uncomfortable in people simply
being interested in you. Hell, I'm responding back to you because you were
interested in my condition so it does come off as pretty hypocritical.
daigonite I don’t want you to think I’m being mean, or whatever, but I’d like to explain something to you.
This might take me two post.
Let’s start with your independence.
I’m not sure what you do for work, but if it can’t be made accessible, it has to go. You can find work doing something else maybe, but that would depend on many things.
This will limit your independence and life as you know if, unless you have plenty savings, or resources.
You worry about what people think, but as a blind person, you’ll trade that space for another, because people are going to think things about you, and treat you differently no matter how independent you are, or successful.
You have many excuses why you can’t live as a totally blind person, but you say it is just about driving you mad, because you just need to be blind.
Did you know there are lots of resources for seeing people to learn things the blind learn?
You have not researched this enough, because I know several professional mobility trainers that cane see, but have trained to be blind, so they are more productive as teachers.
My mobility teacher could read braille, travel with a cane blind folded, and you name it, but he was totally sighted.
We did an experiment teaching a sighted student braille, and after the year was up, he could read and write it just like we could.
You claim you have a copy of Jaws, but you don’t install it. Why not?
Jaws has a manual both for the sighted and the blind to teach you how to use the program. Make sure you have the most current version, and when sitting at your computer turn off your monitor.
You are in the privacy of your own home, and in your home, can live totally blind daily.
If you have this drive to be blind, what is stopping you from living blind at home, and on weekends?
I don’t want you to blind yourself before you experience what it is like, and have training, so I suggest you call your local rehabilitation services and ask them to allow you to go through what is called home training. Yes, they will allow you a fully sighted person to do this.
You can also teach yourself just by doing.
You need to give up your car, and take the bus, or whatever transit system is in your city 100% of the time. This won’t cause anyone to think anything about you at all. Why don’t you do this?
Sure, you’ll be a seeing person traveling this way, but it isn’t any different for the blind when traveling by bus, accept, we have to ask what number it is to make sure it is the correct one.
Most times this is just to check, because the buses are usually on time.
I look as if I can see, and nobody asked me anything when I’m traveling with my cane. The seeing most times don’t even notice.
I say this, because once you have mobility training, I want you to travel like a blind person. All you need do is wear shades you can’t see through.
If you aren’t good at it, you’ll need to work out something to get where you need to go.
Buy a sleep shade, and as soon as you are home, put it on and keep it on period.
If you don’t have an iPhone, trade and get one, and as stated use it without seeing it.
Everything else in your home, do this as well.
Your mail will need to be made so it comes to you online, because you’ll not be able to just read it. Same with any publications you receive.
For now, I’ll not ask you to ask your bosses to make your job accessible, but it be a good idea to learn if it is possible.
At work, you’ll see, but before and after that time, you won’t.
Last, I think you should get in to therapy. To be a blind person, you’ll need to work it out and truly understand what you are talking about wanting.
I don’t know about treatments for your condition, but I feel therapy might help you with it.
Also this will help you get the services you need to learn to be blind. Your therapist will write a prescription if necessary, but I don’t think you’ll need it.
I am speaking to you as a person that once could see lots. I miss my sight, but I am not sad, and am adjusted.
I don’t wake up screaming in the night, or get depressed or anything, but I’ll tell you flatout, being blind takes lots away from you.
The things you take for granite simply are not possible anymore, so you change your life.
Frankly, it makes me a bit angry when I read about how you are suffering, but in the next sentence you are talking about what people will think, and how you can’t find this or that, and you don’t know how it is you’ll get through this suffering, because you can’t be blind.
I didn’t have that choice, so I had nothing else to do but figure out how the hell it was I was going to be blind. Do you understand where I’m coming from?
Sure, mentally, you’ll know you can see, and now and then, you’ll see, but you can be blind, and live blind without harming yourself.
You claim to be well adjusted, and intelligent, so use these things to get you through your suffering. Be blind!
This website you are looking at your computer monitor and posting on is a great resource for your training, and information. Use it!
Also, unless you have plenty money, don't expect to get all the fancy things and equipment right away the blind use.
Most of blind people don't have all these gadgets, but live just fine.
Some can't even use them believe it or not.
Learn to use the things you own without looking at them at all.
I could go on, but maybe you understand me.
Chelsea, when Bernadetta tried it it was flippant and over the top. When you tried it, it was pathetic.
The pair of you, Bernadetta especially since I think you'll actually at least read this and consider it, ought to consider something. If you're that flippant about something you don't yet understand as a disorder, but which does turn out to be a problem, you could be perpetuating the very issue you're trying to mock. This is a common thing with mental illness in particular. Old, outdated assumptions and judgments are allowed to stand because people would rather wave them around than actually get to know the ins and outs of the condition.
So okay. Do I think you can claim you have any old problem and immediately get sympathy? No, I don't, and perhaps, Bernadetta, you were poking fun more from a "god, where does it stop?" angle. Still not okay, but a bit more understandable.
But I do think that there are disorders and abnormalities out there which frankly aren't well understood. And if they sound weird to you, that's one thing...but perhaps joking about them or calling people nuts, without actually verifying whether or not the condition has neurological or psychiatric involvement...well, perhaps that goes a few steps too far.
I'm very firmly of the belief that the best thing to be done when you confront something with which you're unfamiliar is to try and understand as much as you can before making any sort of long-lasting judgment call. People can't help first impressions and how they're made to feel because of them, but they can sure as hell help how the act.
And that is exactly another thing.
People don't understand the condition of blindness.
Family stops dealing with you, you lofse friends, your source of living.
It becomes harder to date, read the morning news, for some people just talk a simple walk.
You have this mental condition, and you trade that condition for the condition of being blind after being sighted, and if you had trouble before you were blind mentally, you are likely to be even worse off.
So, a little bit of joking if it makes you jump off a bridge, wait until you get blind, and the joking is real.
@ Foreel - I generally agree with what you're saying and unfortunately while what
you're saying is all true, what I am trying to convey is the fact that there are parts
of what I experience that are not a choice.
I guess I didn't explain thoroughly enough, since while I do feel urges and desires to
be blind, logically I understand that being blind and wanting to be blind are two very
different things. Quite frankly the most frustrating thing about this whole thing is
knowing that I feel these desires but I don't want to succumb to them in a sort of
attempt to be normal.
The primary reason why I don't engage in these behaviours is because of my own
internal feelings towards the subject. Say what you want about it but I feel horrible
about allowing myself to succumb or rely on any of these things. I guess one way to
view it is someone who feels self conscious about needing to use specific tools for a
degenerative condition as their condition continues to decine.
Internally I have to wrestle and come to terms with the fact that what this is is
something that I can't really do anything about and is getting worse. In the back of
my mind I don't want to accept that this is who I am and I try to avoid those things
so that I don't want to remind myself.
Regarding mobility training, I unfortunately am not sure how to get access around
these things but at the same time to be quite frank I'm also very afraid to ask.
You're right, I'm not the most researched in these sorts of things but that's also
because I try to avoid the whole thing out of guilt. At the same time though usually
sighted mobility instructors have gone through a special college course which I
cannot currently attend.
Unfortunately while I have tried therapy I can't continue to go, because it's too
expensive. I think it did improve some problems surrounding this but I didn't really
make any progress with the vision thing. After a while my therapist figured it would
honestly just be better if I just let go, but I find that extremely difficult. I'm honestly
not sure what therapy can do for me at this point, but if you have any specific
therapy options that you think would help, feel free to throw it my way.
I mean, I guess at the end of the day I really do agree with you - I am really
making excuses. I'm trying to avoid the problem because I don't want to deal with
it. I fear having to implement this double lifestyle into my life because of the
adjustments I have to make. And you're right - just being blind is the best way to
learn, as I've learned from personal experience. And I guess that sounds really
stupid for someone who doesn't have a choice, but my feelings are also not really a
choice either. I feel like I'm being forced into this position but I don't want to deal
with it. I want to go about living my life. Maybe if my sight was really going I
wouldn't be so hesitant, but then it wouldn't really be the same problem, I guess.
I've known for months that my own denial on the subject has caused a lot of
problems and I still have tremendous trouble in accepting that my feelings are only
going to get worse and I have to just accept some sort of integration between the
two but I have no idea how to deal with this all right now and I just feel like I'm on
the verge of collapse. I understand that you didn't have the choice but I can't be
alone in realizing how hard it is to accept something like this. Maybe you handled
your issues differently but admittedly I'm a coward that has trouble accepting the
problem. It's easy to talk about it I suppose but honestly difficult to accept 100%.
There's always that doubt in your mind.
But I guess if it makes anything better, I do have some skills. I have walked with a
cane before, albeit under supervision, and I am learning braille along with how to
use a computer. It's coming slowly because I don't want to engage in these things
for what I explained previously. I do sometimes just let myself go and stick in my
contacts and just do stuff blind for a while. But most of the time when I'm
contemplating on doing those things I just feel too much like shit about it and just
try to sleep the feelings off.
For what it's worth I have no plans on hurting myself anytime in the foreseeable
future. I do see it as a possibility if my condition gets worse but I guess by that
point I would have already taken steps to learn how to do these things and overcome
my intense fear of accepting this crap.
Greg, sorry to read that you automatically dismissed my mockery. It's quite ridiculous that you immediately accept Bernadetta's but not mine. I told you guys I have a disorder; surely since you believe disorders are a valid and real thing Greg, mine should be no different. So, to continue to support this lady who made herself blind and some other person claiming that this is a disorder is idiotic.
Daigonite, the reason you feel your supposed feelings are wrong is because they are. Deep down, you have to know that truth; that is why you are too chicken shit to actually live as a blind person. You know it is wrong, you know it will give you a ton of hardships that you frankly do not have as a sighted person, and you know it will absolutely be burdensome to you as well as other people.
You continually make excuses and talk about how worried you are about what people would think of you because you are really sighted, and let me tell you, that sort of thinking would only get worse if you allowed yourself to become blind. Except, you wouldn't necessarily be concerned about what people would think of you acting blind as the sighted person that you really are, but you would be concerned because you would know they would view you as less than they are, no longer as the equal you once were. Whereas, as it stands right now, you are an equal to sighted people because you are one of them; you are in the in-crowd so to speak. Obviously you don't think of this, but as a sighted person, being in the in-crowd gives you many more advantages that would be ripped from you if you allowed yourself to become blind.
These are some among many other reasons why anyone's "wanting to become blind" is seen as ridiculous, unreal, unacceptable and plane stupid to most of us. Because, quite frankly, blindness is unpleasant in more ways than not. So why anyone would want such a thing as a part of their life is nonsensical and unbelievable.
Unfortunately while I'm aware of the fact that I could not currently survive as a blind person because of my lack of
skills, because of the fact that the desires are outside of my control (at least in the current state) I can't really change
any of that. I mean, you're right - sighted people have advantages over blind people - that's undeniable, but at the
same time, it ultimately doesn't matter if the issue is outside of my control.
Ultimately I find it a little strange that a blind person would argue that nobody would ever want to go blind ever - this
is actually something that a lot of people born with congenital disorders eventually have to decide, some sooner than
others, because of the pain and discomfort of their disorder. If there is fundamentally something wrong with how my
brain interprets its vision and constantly feels like it's "wrong" to the point of interfering with my life, then I think that
would also be a justifiable reason to desire blindness. Of course, if this is the case, the more desirable option would be
to seek treatment for the condition, but if no such treatment exists, then blindness may be the only option to relieve
these symptoms.
I don't really feel that my desires are wrong, I know that they will be negatively viewed by society. Claiming that "I
know those feelings are wrong" is a pretty stupid thing to argue in of itself because social norms are constantly
evolving and changing. Think of people throughout history who defied the social norms despite feeling "wrong" about it
and realize how silly it is to say something like that. A decision that gives me a lot of hardships isn't necessarily a
wrong decision if the end net result is relief of the symptoms in question - I guess by your argument though that
people who need a leg amputated due to infection should just die because of the great hardships of being one legged.
I mean, Christ, Chelsea, I'm already viewed as lesser than other people. Look at how you're treating me, and look at
how other sighted people are reacting to the story. The fact that people honestly act like people like me are worse
than say the 3 people who went out and killed people at the colleges this week is absolute evidence of the fact that we
are NOT just treated like "sighted people". The only social advantage I have over you is that I'm able to hide it, but
that's not really true either, and for me, hiding it is extremely stressful and takes a lot of time and energy.
Frankly, if you have any suggestions that would be appreciated, but it seems more like you're projecting more than
anything. I've made it clear that I'm open to suggestions to help treat my condition as opposed to going blind but
apparently you seem to have missed that part of the post. And unfortunately, no, "keeping me locked up in a crazy
house" is not going to solve the problem and frankly will probably cost you more tax dollars than if I actually went
blind.
Why would you (daigonite) desire to be blind?
Oh, both you and Bernadetta were flippant and over the top, Chelsea. My point there is that she got here first, and your mockery was just parroting her. But hers was better phrased, funnier and frankly packed more of a punch. Never once did I say she was completely okay to do it, in my eyes. Cody said it first, but I definitely second the idea that it was a bit much.
Good news: neither you nor Bernadetta have to care.
Bad news: as far as your so-called disorder goes, and as far as Bernadetta's for that matter, I've yet to see anything more than puff and blow. Yes, I even had a look to see, just for the fun of it, if either of those disorders was generally a thing. They aren't.
Well, I suppose they both are, but they would both fall pretty square under the blanket term of psychocis. There's therapy and medication for that. Maybe it'll help and maybe it won't.
And as far as BIID, there's so little known about it that there isn't any known therapy or medication that works well for it. I do think strong efforts should be made to help on that front though. Because the sooner we end up with coping mechanisms that work, the sooner we will be able to realistically say "Hey, wait a sec, you don't have to blind yourself; there's therapy or medication for that, so how about you try all your other options first.".
Any more questions or snark on the way? Because nothing's made it past the introductory phase so far.
Looks like ShepherdWolf has got down how I feel right to a T. Ultimately if there was
an alternative to being blind I would take that, but there isn't currently one, which is
why I participate in research. Same with Jewel and the others I know. For me
though because there is no viable alternative I do frequently contemplate working
towards functioning as an independent blind person. The reason why I have trouble
engaging in this further is because I feel intense guilt whenever I try because I have
a lot of self loathing for this part of myself. Ultimately I need to overcome my fears
in order to go down that route but feelings of doubt in my condition and guilt impede
progress.
@ Pooka - I stated this previously but it's mainly because I don't feel like I should
be a sighted person and the fact that I can see makes me feel incorrect all the time.
I think posts 83 and 85 are probably the best reasons "why" I feel that way but it's
not exactly something that I can put into words very easily, so if you don't
understand that's fair enough.
Hypocritical is something I nevver intended to bbe. I only meant to ask pointed questions. Being hostile toward the sighted is something I don’t believe I am. Being hostile to some of the attitudes of some sighted people? Yes, I have to say that I guess I am, and I don’t think I’m unjustified in that. Because as I think I acknowledged, if the desire to be blind has some sort of neurological/medical component, then I understand it. If the desire to be blind is because you envy us in some ways, which you even admitted, then that’s a little much for me personally to wrap my mind around, and frankly, it smacks of some of the attitudes towards which I’m a little hostile. . Do you have the right to act on those feelings? Yes, I concede that point. But you have to expect that we as blind people might not necessarily understand that, and as you have seen, some of us are not necessarily the most sympathetic. I admit that I have a little trouble in that department myself, and it’s because the world is largely built for the sighted. As a sighted person you can get into your car and go where you wanna go, assuming you can drive. I have to make a slight production out of things at the best of times, and at the worst I have to use cabs and pay more money than my sighted counterparts or use paratransit, which isn’t always as reliable or expedient as I’d like it to be. Granted these are inconveniences and I’m used to them, but I can’t imagine why you’d want to give up the privilege of mobility you have that we don’t always have. You also have the privilege of being anonymous and going about your daily affairs without much in the way of having your judgments questioned about the slightest things. Sometimes when I’m crossing a street, I have my judgment questioned about whether or not I can do that. You have the privilege of using a computer and going onto a banking website and not having as much trouble with it as I do because that particular bank’s website isn’t as friendly with my screenreader as it is with your computer and your ability to see. I have to make this whole big production of finding another bank, opening up another account, closing down my old account, getting my direct deposits changed over and waiting until things cool down. All because if I wanna be as independent as possible, these are things I have to do. It’s annoying. It’s a nuisance. It’s something sighted people don’t have to worry about in large measure. It’s something you’ll have to worry about if you take the step of voluntarily destroying your sight. Not being unkind and trying to be disrespectful of your plight, but these are the things you’ll be dealing with if you take that step. I mean, I like my life the way it is. I don’t find blindness in and of itself particularly unpleasant. It is what it is. But this life isn’t for everybody; I daresay it isn’t even for every blind person, to be honest. But to be fair, jjust because I can’t understand what you’re going through, I guess I can’t disparage you. I have never heard of BIID until this board post, but if it’s something that’s real, I have to respect that. But maybe thinking about some of the stuff I and others have presented here will help in some ways to alleviate things for you and make you think about this in a different way. I dunno.
Daigonite,I am reading your post, and paying attention to what you are saying.
I don’t see this as wrong, I just see it as a hardship you deliberately want but don’t need.
A person can’t be treated if they refuse to be.
You waste money on therapy if you refuse to open your mind to being blind, and that I have no idea how to deal with.
I had to smile at the delimma of there being no treatment for your condition. I too have no options for this blind I’ve got.
I don’t struggle with my condition as you do, but I have no option but to be it.
Asking for understanding from me is sort of mute.
I see your difficulty, but I see you making it worse, because you fight it, do you understand what I mean?
I’d like to ask this question.
I’m going to come at it from a different side.
Why?
Why does a person with your condition wish to be blind, or whatever the condition dictates you be?
What is on the other side of it for you?
Sympathy, pity?
Will you now live in a world were you are seen as helpless, disadvantaged, and in need of the worlds kindness, and open hand?
Is it now you’ve got a cross to bear, because now you are blind, and your everyday existence will now be a struggle to some extent, like the lady that started this board is dealing with?
Can you now wake up in the morning, and smile, because, well, look at all the things I’m missing, and I can’t do?
Perhaps the joy is in the pain of loss?
A good therapist will ask you all these things I hope; do you have answers?
To understand this condition, as you want others to do, you’d need to explain the other side of it, and what your brain, or mental psyche is driving you to.
As I understand it from public conversations and such, you are a person with means.
Why don’t you simply buy your freedom?
You talk about not having access to resources and training, have you just thought about buying them?
I sit here at my computer, and I can simply buy my blind supplies with a few keystrokes and my credit card.
Any vendor that sells these things can assist you in measurements, and the questions you might have as to what is best for you.
Again, you are on the Zone. Ask questions, and you’ll get a list of things you need to start living blind.
I’m not talking about talking clocks, and silly things like that, but the base things.
You need a cane, some braille paper, and some method to write it.
You need a screen reader to operate your computer, if you own a PC, or a Mac, because it will come with.
While you are buying your supplies from a dealer, remember 70 to 80% of the blind are unemployed, so buy one for you and ask the dealer to donate a second to someone that is baring this cross without a choice.
You can buy books, training materials, even audio training items to help you learn.
Many are free from places like the Hadley School, and others. Donate some cash, and tell them in exchange, you want to be taught to be blind.
The Red Cross, or Lion’s club in your area can help you find these things too.
Donate some cash, and say to them you want to be connected to someone that can train you.
Now, your blind life training.
70 to 80% of blind people are looking for work. You can hire someone easy with the skills to teach you things. A budget of a couple thousand dollars can get you someone who will help you learn.
Interview them, use your ability to see to asses the level of skills they have before you hire them as your trainer.
The person doesn’t have to be blind, but why not give someone on the other side a chance to earn some money, and work?
You have a large home, so can give them room and board for say 6 months along with a small salary while you are being trained.
From where I sit, I can’t see why you are suffering with your sight.
Again, I don’t want you to just harm yourself to be blind, but I can see how you can be blind until you honestly decide you wish to be.
You can live blind period, and be a perfectly seeing person.
Yes, I know, it isn’t exactly the same, because you know you can see.
Again, this is where your financial status comes in to play. Once you have done your therapy, and training, I’ll bet you can locate someone that will give you something medically sound that will blind you without such drastic methods as drain cleaner.
Maybe that is part of the deal too, that the blindness must be traumatic?
Explain that to me please?
Yes, and I did read the part about you resisting doing these activities. Thought I'd say that.
Again I'm not really in the same state that Jewel was in when she blinded herself so
I feel that you're getting a little ahead of the situation, forereel. It could be entirely
possible that simply wearing blinding contacts for the majority of my life is able to
keep my condition stable but I can't simply resort to that possibility, especially
considering that people like Jewel exist and I share a lot in common with her.
I guess the best way to put it is that I desire the experience of being blind. Not
simply just doing things the blind way but literally not being able to see. I would
rather have the transition be seamless and painless but that is practically impossible
without surgical procedures (Jewel said something along the same lines). In fact I
often describe it as wanting to snip the optic nerve or removing the retinal tissue,
with no apparent damage to the eye from the outside. I would rather not have
people know that I did so intentionally. For me the idea of waking up and being
totally blind in a hospital bed is a way to try to think about this experience and is
probably the most recurrent thought I have about it.
Another way to look at it is when I'm using various software, I think to myself a lot,
"I wish I could use this blind". Like I said previously it usually either leads to duds or
I just don't have the time to learn accessibility with that software (in the case of
work) but in some cases I think about ways to adapt that software for the blind,
which lead to me tracking down various important information to work on
accessibility. However because of my own fears about embracing my desires to be
blind I lock up and refuse. I'm frankly constantly in a state of denial over
everything.
I notice a lot of these posts are talking about the plight of being blind and the
difficulty that the blind face. While I agree and I am definitely not aware of these
problems on a personal level, they don't really change the whole "want to be blind"
thing regardless, since it's fundamentally rooted in the actual experience of being
physically blind, not really on social interactions. At most I would rather be treated
as a blind person than a person pretending to be blind but I also wish blind people
were treated with more respect. I don't want any sympathy from anyone, I just want
to continue living my life as a blind person.
As the situation clamps down I start to contemplate how to circumnavigate and work
around these issues as they come up - since my condition is in far earlier stages
than Jewel's case back when she was in her 20's, these issues arise sparingly but
are jarring when they come up, which roots a lot of my fear and my attempts to
fight against these desires. In addition, most of the problems that you mentioned are
social issues that, while making life difficult for the blind, are not impossible to
overcome, and many issues could be remedied by proper technology practices and
improving social attitudes - easier said than done, though. In fact the only coping
strategy that really helps me at all is just thinking about how to do sighted things in
the blind way.
I really do agree with you telling me not to fight it though. It's just hard I guess. I
mean I guess the best I can say is that one day I'll learn to deal with it and not be
so self loathing.
You have a really good set out plan to help embrace these things. I can't really do
much of it now because while I am employed I'm quite underpaid, but I do already
have a cane. I even know a bit about how to use it, and have walked with it outside
before. Honestly, if I'd stop locking up every time I wanted to go and do blind stuff it
wouldn't be so hard, but I'm having way too much trouble getting over that. Maybe
that's where therapy can help. Unfortunately I can't start therapy again for a while
because of an issue with my insurance and I simply cannot afford it at the moment
until I pay off most of my current medical bills.
I guess it's important to line out that while others do have this sort of fear of
themselves, its not really characteristic of the disorder. It's more rooted in my own
dissatisfaction with myself and the fact that I can't really be a normal human being.
I've always felt like I had to fight myself just to be able to function in society, and
something like this feels like a final nail in my coffin, like I'm never going to be able
to be these things. And I'm sure it sounds strange that I'd want to be "normal" but
also "blind" but again they're rooted in different things - my desires for blindness are
based on a vague uncomfortable feeling that I tolerate along with identity mismatch
issues, while my desires to be normal are more from my low self esteem issues and
the way I was raised. At this point I have to give up one or the other and my
attempts to silence my "blind side" have failed for 14 years and it hurts
tremendously to know that I have to sacrifice any attempt to be normal again. I
mean, I can't help but feel like many blind people have gone through this particular
emotional struggle themselves, as they have to learn to accept themselves over the
need to be normal.
Honestly, if there's anything to be taken out of this, don't feel sorry for me. I will
eventually overcome this particular struggle and the development of my BIID will
probably follow a path towards simulating blindness in more and more of my life.
Most of my current issues are related to my self esteem, depression and my self
hatred, but hopefully my posts can show how BIID can influence someone's
emotional state. The desire to be blind is not really something that is bad in of itself
and while it makes my life uncomfortable, it's the emotional baggage that comes
with everything that makes this shit hard - and hopefully cases like mine or Jewel's
can rather raise awareness so that other people don't have to deal with this shit in
the future.
If there's one thing that does bother me - you do mention that "I have a choice". I
have a choice to be blind but these problems are not a choice. I've chosen to not be
blind until I literally can't take it anymore, and try to take what I have and make the
best of it. I do try to assist with helping blind communities and I do donate to local
blind organizations but currently I do not have the funds to continually donate or
provide for others at this time - however, I have high goals in improving the
computer accessibility situation and have also considered training to be an instructor
as well, as I find my ability to contribute towards the blind community would be
better suited there - however financial contributions are most certainly a thing I
would do once I'm in a more stable financial position in my life. Braillemon showed
me what potential writing accessible software can do for the blind community and
while it's not perfect, it's a great first step in the right direction.
If I told you exactly how to wake up in a hospital blind, would you do it?
I guess this is my interpretation of what daigonite has said, but please correct me if i'm wrong.
1. She has a disorder that makes her want to be blind. It doesn't matter if we say being blind sucks, or talk about the problems that arise because of it, she will still have this disorder.
2. She could learn to live as a blind person, getting a screen reader, using a cane, getting a job that someone who is blind can do. But there are a couple of things that prevent her from doing that. Mostly, it seems her guilt. I think this is understandable, look at the backlash people in her situation are facing from our community. She feels guilty because we are all saying why would you want to be blind, you are so lucky, and yet she has no choice in the matter, refer to point 1. So she feels guilty because she isn't actually blind, and she knows that a lot of blind people almost envy her sight, or the convenience being sighted provides.
3. Should she actually go down this route. This links to point 2. Ideally, she'd seek treatment in the form of therapy. But this is limited by her financial constraints and the fact that biid is poorly researched. So will therapy, if she managed to get it, actually help her? If she learns to live as a blind person, is she doing the wrong thing? I imagine this is something she has to struggle with, deciding what route is best.
4. If she goes ahead and blinds herself, which she says is not the ideal outcome, she would rather manage her disorder, will she be rejected by the community? Looking at this topic I'd say yes, a lot of people would shun her.
So when you look at it like this people with biid are really caught between a rock and a hard place.
All I can do personally is extend some understanding to them. They can't help wanting to be blind, no matter how much we yell about how difficult it is it won't change that. So my personal stance is that I'm going to try and offer her support whatever she does.
I'm not saying you guys have to do the same, but I feel like a few of us are looking at it from the wrong angle. We're acting like we can convince her to change her mind, by talking about how hard it is. But we can't, not really. The most we can do is help her to figure out how to get around the insurance issues so she can access therapy, something i'm not able to do as I live in the UK and know nothing about US insurance. We can encourage research into biid, we can actually try and welcome, or at least not attack, people who have it.
And again, you don't have to do any of these things. But dismissing someone, or trying to make them change their mind when it's a disorder that makes them feel that way ultimately won't achieve much.
Also, you didn't answer any of my questions exactly. You only outlined how you can't do this or that.
You have extra rooms in your house, so could just offer room and board in exchange for training.
That cost you nothing but food and some extra water for your trainer. Much like having a live in girlfriend, or whatever.
If you mean how to injure myself, I think it would ultimately depend on the state of my
condition.
Since I realized this back last November there has only been one time that I actually got
anything together to do something and that was a few weeks after the initial realization, which
caused a pretty bad mental breakdown and was probably the reason why it was so bad. So I
don't think it would be a particularly good idea since in those situations it's better to just ride
the wave and let the feelings pass than to encourage someone to do it.
This actually leads to a very annoying problem, which is reading about people going blind in
different ways. This is generally unavoidable since you can't really prepare yourself for when
you hear about someone going blind, and it's essentially giving those feelings ammunition and a
plan. I absolutely loathe coming across articles of people going blind because it intensifies these
feelings and is basically like waving a sign that says "THIS IS HOW YOU GO BLIND!"
Other considerations would be the level of pain that I would probably suffer through, the
amount of time it takes to go blind, the level of blindness I would be left at, and how the injury
would affect other parts of my body, including my face. As such I would much prefer a surgical
option but that would only be when I'm at the end of my rope.
The only case that I would actually do it is if that wasn't working over an extended period of
time. If that were the case I would legitimately consider blinding myself. But in my current
state I just pocket those feelings, and at the worst I just try to sleep it off and hope it just
deals with itself while I'm sleeping. I also think that masking my vision with my black out
contacts helps but I generally avoid that for the aforementioned self esteem issues.
Forereel, I love you, too! Posts 84, from Johndy, and 86 articulated well and cleverly how disturbing some of this is.
I'll leave off any comment to Daigonite, for now. I fear it would just be unhelpful sarcasm and surly remarks, and one of my reasons for being here is to make friends.
Oh yeah, I'm available to teach Braille, although that's probably the least of the things you will need, Dai'gone., on a day to day basis.
Scarlett - I think I should be in the financial position by Spring 2016 at latest - I
would have paid off the problematic bills by then and hopefully I would have
received a raise at my job as well. Please don't send money my way or anything,
that just feels awkward lol and I can get by currently. I honestly don't want
pity/money from anyone. At this point it probably would be better for me to try to
overcome my self esteem issues since I think the emotional impact of my condition
is magnified because of it.
I mean, to combat rejection, I try to put myself in a position that really does benefit
the blind community in return. As I stated previously I enjoy thinking about
accessibility and how blind people use things, and while I don't have full screen
reader capabilities, I have learned a lot and I genuinely want to improve the
accessibility situation. I want people to understand that my feelings are genuine and
in a weird way I am also affected by at least some of the issues that blind people
face; although from a different angle. For me, it's the only way that I've been
currently able to integrate these feelings with my life, although currently my job
doesn't really work well with it which builds my frustration. I have aspirations to
become an accessibility developer and I want to address, formalize and ensure that
standards are in place and are being properly enforced. I know I can't do it myself
but I want to reverse these bad trends in accessibility. This is how I want to offer
myself to the community and I think that it utilizes both my skillset and who I am as
a person to maximize my ability and contributions. I've only made one game but I
want to extend this to other general software and educational tools for those who
wish to learn these sorts of things for themselves.
Forereel - I don't have extra rooms in my house, I live in a 575 sq ft apartment that
barely has enough room for myself. It's so small that cane practice is almost
impossible inside of the apartment outside of a small corner near the door, which is
simply not large enough for sufficient practice. I'm also not willing to take in anyone
into my personal living space that I don't already have a strong established
relationship with, and I think it's a bit unreasonable for you to suggest that.
Yeah, I meant by offering help, suggesting alternatives, and generally being nicer, rather than dismissing the issue.
It bothers me a bit on here that as blind people we seek acceptance yet will automatically dismiss someone else.
Frankly it's understandable considering the social situation of the blind, and especially
considering how difficult it is to empathize with such a weird feeling. It makes sense
why people are looking at this and asking about the possible social benefits because
frankly it's the only motive that they can understand. It bothers me but it's not entirely
unexpected nor really unwarranted either.
This is why I don't really pay attention to what Chelsea's saying on here. What's she's doing is more sounding like:
'I don't believe you have this condition, but I'm going to mock you, instead of understand you.'
Chelsea, said somewhere that she doesn't know me well. Honestly, if this is how she really is, I'm glad I don't know her. I have family and people who don't know me to be critical enough. And, I see a lot of hipocracy, in the real world.
Chelsea, if this is really a disorder, you should be seeing a psychiatrist, and getting antipsychotic medicines. This, is in all seriousness, as I think more of this board, than what a funny this is. Because, any disorder no matter how big or small, I respect; excepting idiotic sarcasm.
Blessings,
Sarah
Ok, so Wayne is giving you ways to live out the lifestyle, but you're not doing it. You feel guilty? This is why it's hard for someone like me to take this condition seriously.
It's not reasonable to hold so much shame for something
that people are extremely disgusted by? I mean hell,
there are people who are going physically blind that are
ashamed of who they are and fear learning these things.
You're submitting to something that you will be judged
for the rest of your life for, its not something that is easy
to accept overnight.
It's hard to take you seriously when you fail to consider
similar circumstances that blind people face themselve.
Interesting, Daigonite. Well us blind bats are pretty much on the bottom of the
shitter when it comes to perceptions and evaluations, etc. So I imagine BIID
where the person wants to be blind is probably right down there with us.
Ironically, you're experiencing a lot of what it's like to be us. Not the physical,
but the perception stuff. The Daughter is studying social work at college which is
interesting, her and her mom the type they are, and me the resident anti-statist
nonconforming type. Anyway she says most diversity stuff has nothing to do
with disabilities, and if disabilities are mentioned being blind is bottom layer.
That's us. Either we're supposed to be able to do it all spotless and perfect, or
be non-players. I'm a bit surprised there's not more blind libertarians /
anarchists / some other form of non-statist types. Best way to be their pet non-
participant IMHO.
Like Johnny I don't know a whole lot of blind people but while there are
similarities in experiences, everyone is different and it's hard to quantify I think.
I've learned a lot being on this site.
I can't imagine what you're working with, mainly because being blind is for me
just a hardware situation, but every time you are dealing with people's difficult
attitudes, shrinks, medical stuff and all that, you are in a way experiencing it
like a bind person.
If you're ever in the fog, in smoke, or a few other places sighted people also get
into, you're in many ways experiencing it like a blind person. Remembering of
course blindness is continuum, not a binary. I'm stone blind since I have no
optic nerves, but most people have some sight, and some people who have that
sight are injured by light. They have to use stoner shades, I dunno what the
proper words are for those, but the glasses you use to hide your eyes behind as
a kid in school who's baked outa his mind. Otherwise the light gives them
headaches.
I'm not doing wwhat they call minimizing ... just saying whenever they pull this
shit on you you are in fact living like us, although not in a good way lol.
Of course, next time you are in a situation with people when the power goes
out, you are doing fine and they are panicking, well that will be like being us
also.
Daigonite: when I saw what you first posted about this "disorder" I thought that maybe you were trying to be trendy/wanted to do something that sounded cool to you. Since you're apparently friends with the lady who originally got society talking about such a hot-button issue, I figured maybe you just wanted to be like her. It's normal for friends to wanna relate to each other and that's what came to mind with your post about this. So my apologies if I misunderstood where you were coming from in any way. My intent in participating in these discussion topics is never to hurt anyone's feelings so I'm truly sorry if you found what I said offensive.
In saying that, I don't understand how you can say you want help trying to make things better for yourself, yet when people make suggestions to you about how you could get started on this journey of living blind, you put up a fight about how you are unable to start putting people's suggestions into practice.
I know you say that's because of your guilt but I'm sorry, that can only be said for so long. Because, here is what that particular statement has blind people including myself thinking to ourselves, "Shit or get off the pot."
I'm not trying to be mean to you. I'm just saying that if you want this thing so bad and you know that over time your symptoms are likely to get worse rather than better, find a way to make it possible for you to go to therapy regularly. Make time to put JAWS on your computer and start incorporating things into your daily life that we blind people do, such as using that assistive technology that we have access to in order to be as independent and productive in society as we possibly can be.
Can't get blood out of a stone. Time, money and access are all finite commodities in the average life. It's very easy to say "make time" or "find money", but it's much harder to actually do those things.
So, let me get this straight, Chelsea. After reading Daigonite's posts, which are well-explained and quite detailed, you assumed she was just jumping on a bandwagon and mocked her? God, no wonder you lose arguments and fail to effectively participate in rational discussion. If you make mistakes like that, your powers of observation and your judgment are severely lacking. If absolutely nothing else, you should have been asking Daigonite if she was serious, asking her if she was absolutely sure she wasn't just jumping on a bandwagon. Instead, all you did was parrot a previous user and make yourself look like a complete idiot. Congratulations.
Daigonite, just to clarify: in saying that you need to make the time for "wanting to do things the blind way" no one is saying that it will be easy to do so. Everyone is busy in some form or another, but we all should find time for the things we love or in your case, the thing you desire. Because everyone could use your excuse that he or she is just too busy to allocate time. However, as has been said, if indeed you wanna live "the blind way" then you should find a way to do so. Install JAWS on your computer, walk everywhere with a cane, tell your boss that you want accommodations that a blind person would need, tell your friends and family what you feel you suffer from so that you may have more of a support system, ETC.
Another thing I don't understand Daigonite is how you discourage people from donating money to you. Do you not realize that if people knew what you need to become successful in your endeavor or even if people would wanna donate funds to you so that you could go to therapy on a regular basis that they could do so easily? I'm not sure if you've heard of GoFundMe.com but it's a fundraising site that people are known for using for all kinds of things. You could do something like that if indeed you truly wanna get the help you need.
Yeah, you're right Chelsea. I mean, ultimately, while I'm
afraid to engage in a lot of these things out of fear,
ultimately engaging in them does help.
I mean for example I've only walked outside with a cane
once. I was really looking forward to it and when I finally
did it it was nothing like I expected and it really blew my
mind away. For a lot of people this would probably be
awkward but for me it honestly felt liberating because I
could walk outside without falling or running into things!
Last year I badly sprained my ankle to the point of being
unable to walk for weeks and it hasn't fully recovered, so
walking blind without a cane makes me extremely
nervous, but walking with one is conspicuous and people
know what's up. But just that one time had a massive
impact on me and it made me think about seriously
doing it all the time, but blast that people are nosy and
need to know what's up with that cane.
I guess my guilt in public leeches over to my private self.
A lot of people with strange sexual fetishes experience
this as well. They're afraid to engage in these things in
their own homes because of their guilt.
I don't want people to donate to me for my condition
because there's no treatment that has any known
success rate. At that point you're just funding something
that may be completely useless, or basically just funding
my existence. It's not a fair investment. Even if it takes
me several months to be able to afford a therapist it's
not really fair to receive donations from a group of
people who really don't have that much money most of
the time. If people want to donate money to me because
of the software I've worked on, that's fine, but that
actually received some return on that investment, and i
already have donation boxes up for that anyways.
Currently the only thing that can actually help is
participating in research, since it may be able to single
out causes and improve therapeutic and/or medical
treatments, so awareness is more important now.
I mean just thought I'd say that talking things through
honestly helped a lot. I had a rough week overanalyzing
stuff because i was upset about how people were
treating Jewel, which reflected by extention how many
may feel about me. But talking about it really had me
stop and think about things instead of letting my fears
get in the way. So sorry if anyone got a bit rustled, I think
we all did here at some point, but hopefully I can get over
this hump. Honestly I believe that things will improve if I
try to get a better perspective on it and don't be so afraid
that I let it consume me.
Daigonite, no, the only thing that can help you is therapy.
If you are low on money, you have access to free services.
I have confused you with someone else. I’m going to figure out who that person is.
This person talks as if they have means, and they are also sighted.
As to time, being blind requires no time at all, simply because you incorporate it in to your life, so you have the time.
You talk about helping the blind and such, but you are short sighted.
Software is only a really small part of being blind.
We have to shop for food, have our clothing cleaned, read our mail that doesn’t come to us electronically, go to the doctor, clean our houses.
We are not all skilled in these simple task, even us that have been blind for life.
Do you know what a service or how much it helps a blind person if you simply went to the market with them and then helped them sort the food they purchased at home so they knew what items were what?
Maybe you stopped in once a week and sorted the mail and read to them what was important and what was junk.
You really want to help the blind, call your state agency and say Hi I’m Daigonite, and I’d like it if you’d put me on your list as a person that will do or help with simple task for free.
Maybe actually doing for the blind could help you with some of your feelings and frustrations.
You’ve got the time, because you wash your clothes, shop for food, and other task all the time. All you’d do is add some extra stuff to your list and a friend, or extra person with you.
I can see how you’ll not get to your goal at all.
I’ll not donate, because you are a person that could donate your eye sight.
Even myself, a highly skilled blind person benefits greatly when I’ve got someone I know to come to the market with me.
It saves me time, and I can actually do my marketing better.
You sound as if you’re pretty good with computers. Did you know how much of a benefit you’d make by stopping by and straightening out someone computer that has a few problems?
Because you can see a few mouse clicks, and running of a couple programs could fix a computer for a blind person.
Maybe you go to the Best Buy with them and help them pick out a machine that is affordable, and you go home with them and set it up. Piece of cake for you, difficult for many blind persons.
So, yeah, you can help. You don’t have to wish you could, you just have to help.
Nothing fancy at all, because the everyday task are the most problems for most of us.
While therapy is the only current viable option, I simply cannot afford it. I never said
that talking these problems out was a substitute for therapy, I simply think that my
current condition is stable enough where therapy is not a necessity and can be
withheld until I have the proper finances. As such, donations are not required,
especially considering that therapy has a high chance of not working. I personally
feel that it is unethical to panhandle when there is no need or service provided.
Software on the computer is indeed a small part of being blind. However I think it's
fairly short sighted yourself to claim that software cannot be adapted for other
purposes. We currently live in an era where technology on phones provides us with
fairly fast operating systems, internet access through 4G, a camera and recording
capabilities. Software is also used on specificly designed hardware such as document
readers. Software design is actually probably the most effective way to grant the
blind independence.
Technology is limited only by hardware limitations, programming language
limitations and the creativity and skill of the developer. It's extremely adaptable and
is the most viable way to grant independence to the blind, and far more important
than simply helping individuals.
For example, let's go through your examples.
- Shopping for food. With the combination of Computer Vision technology and
cameras on phones, text can be located via camera and read aloud, thus allowing
the blind to price and identify foods themselves. In fact, a blind-from-birth friend of
mine used an app called Google Goggles for this very purporse and was able to shop
completely independently.
- Clothes cleaned. If you have your own clothes washer and dryer, simply labeling
the parts of the washer and dryer is enough for basic clothing. This can also be
assisted by above Computer Vision technology. I've actually washed my own clothes
blind on multiple occassions so this may just be an issue you have.
- Read our mail. Document readers can improve their software (and possibly
hardware) to allow reading of mail independently.
- Go to the doctors. Self driving cars are already in development, and may be
available within 20 years - this means that within half a century these automobiles
may be readily available for the blind. Scheduling an appointment can be done
through the phone, which can be made easily accessible these days, or the
computer, which accessibility can be enforced through better and firmer internet
standards for businesses.
- Cleaning your house. Although technology can't do much to compensate for that,
training for independent living can. I actually do clean my apartment blind so...
yeah. Kind of a weak example really.
A major reason why a lot of these things are difficult are because of the lack of
resources dedicated to improving accessible software and hardware for the blind. So
instead of arguing that I should just perpetuate the system that leaves the blind
dependent on others, why not argue utilizing technology to end this era of blind
dependence? While it's true that these things take time, I think it's worth the
investment.
In addition, why do you feel that someone with BIID is obligated to assist the blind?
Not that I have any objection to doing so, but we also didn't have a choice to have
BIID in the first place. It's not really right on the sole virtue of having BIID which is
both incurable and unpreventable to say that someone with BIID is somehow . I'm
lucky in that I'm able to contribute in a significant way but most BIID patients simply
have skills in areas that wouldn't have any relevant impact on the general lives of
the particular disability of their BIID.
Regardless, I already do provide services for my blind friends. Since I know most of
my blind friends through the internet, it's somewhat limited what I can do, but
anyone who knows me personally knows I don't mind lending a helping hand. I have
frequently helped identify money or rewrite formulas to be blind accessible.
You keep talking donations.
Now, I might have more money than you, but let me tell you something interesting.
Because you are fully sighted, you have more ability and resources open to you for money if that is what you need.
You’ve got about $20 to $30 worth of cans and bottles that could be picked up in the streets and other places just because you’ve got the ability to see them laying around.
All you need is a pair of gloves, and a bag.
$30 is $120 a month you got for the taking I can’t even get. Smile.
As to computer technology let’s talk about that some.
You gave the example of shopping in the store. Even with the best technology it be really time consuming to shop in that fashion.
Not only that, some blind people can’t get to the store even if it is only a block away due to mobility restrictions.
I’m not talking multiple disabilities, only blind. They simply can’t navigate.
Okay, so you drop them at the door of the store, you’ve still got the navigation issue.
Self driving cars available in 20 years? I need my groceries today, not 20 years from now.
Your help can not only make that happen today, but will save me time, and money.
I personally can get to the store even across town on a city bus, or my feet if I choose, but many blind persons can’t.
The other day I went to the store with my son. I wanted to buy beer. I knew exactly what kind I wanted and were it was located in the shop.
My son pointed out that 18 cans was on sale today. Instead of paying $12 for 12 cans, I got 18 for $14.
If I’d gone alone, I could have gotten the store clerk to get it for me.
He says what kind, how many 6 or 12 pack, bottles or cans. He doesn’t get in to, well sir, you can get 18 cans for less today, he just gets me what I ask for.
The method you described for washing is okay, but I’ve got a much simpler method, and my clothing is never stained, or whatever and comes out clean, but some people haven’t learned these things, nor understand how fabrics work.
It has nothing to do with mental ability, it has to do with never being taught, or helped with the task to learn.
Your help could make this happen the next time my laundry need cleaning, not when they produce a computer to help me at some future date.
Am I to wear nasty clothes for the next 20 years?
You speak of the investment, are you able to program and maybe, just maybe produce any of this expensive equipment?
Next, who’s going to make that investment you speak of for these things to hopefully be developed?
Last, how the hell am I going to afford them?
I’ll admit, my technology makes me more independent, but I have the resources, and such to have it, many blind persons don’t.
Are you wear of how many blind persons can’t use a computer, or technology? Next you need the internet. Do you know how many people have problems budgeting, so can’t manage to keep internet services in the home?
The government and cities are helping with this, but it is still a major problem.
You want me to spend 3 to 4 thousand dollars on something to read my mail, or own an iPhone that comes with a monthly bill when you could stop by for 10 minutes a week and make this task possible.
All text materials are not able to be read, and that technology is in the future. I need my junk mail sorted today.
Why do I feel the sighted should be, or feel obligated to help the blind?
I don’t on one hand, and do on the other.
On the don’t side, it isn’t a seeing person fault I’m blind, so they have no obligation to me.
On the do side, as humans, we can make life better for everyone if we lend a hand sometimes.
You said you wished you could help the blind, so I laid out how.
You help your blind friend online, but what about your local blind community?
You want to be blind, and you are suffering with your condition that makes you want to be blind. Don’t you think it be good for you to really see what it is like to be blind by experiencing the blind persons life?
No one will think you are weird because you help your blind community. You’d learn that being blind isn’t about technoloty, it is about waking up and brushing your teeth in the morning, and making your first cup of coffee.
I ordered a new coffee machine online. Now, where the hell’s the on button?
Okay, Do you understand my point?
If I opened the box and you were with me, you’d say, oh, press this one. Bam, I’m ready to brew.
An experiment.
Go to your WalMart super center, or the largest market you have in your city.
When you get to the door start the timer on your phone, and go find the milk WalMart brand.
How long does that take you and you can see.
Next, have your seeing friend guide you from the front door.
You just did it because you can see. Tell them what iles to turn on to get you to the milk you just found when you could see.
Smile.
Shopping online ftw. So yeah, tech can help with that shit. I avoid the store if I can help it. It doesn't matter what examples we use, whether it's a phone app that reads or a sighted person, online is far better. And also, not being funny if a blind person can't get a block away from their house that's a huge statement about local rehab services more than anything. Or their level of effort.
True, but it is the case.
I know several that just don't travel well.
In the US in many cases shopping online for food cost more, so we're talking a savings as well.
Fresh produce is best squeezed. Smile.
That's true, I do have to sacrifice knowing what certain things look like when I order online. But it's still 100% my preference over dealing with people lol!
Lol. Smile.
Seriously? Not being able to travel a block? Something's seriously wrong if that's the case.
Hey daigonite I feel for you. ForReal's posts gave me an idea that may be more useful for both blind and yourself. I'm offering to answer any questions or spend some time face to face with you in order to give you a more realistic experience to living as a person who is blind in exchange for helping me out with some tasks that require sight. Shoot me a private message if interested. More than happy to lend a helping hand.
I'd have to get a secondary card, besides my bank card. I've seen what using your bank account to do that with can do. If something doesn't clear, and you don't know it... Boom! And, banking Online's not extremely accessible, yet. They are trying, though.
As far as another problem, a lot of places refuse food stamps. And the ones that don't, charge taxes, or try to. Or, they charge a lot for little. For some of the stuff Schwans sells me, I can buy more for about the same price, at a store like Costco, selling in bulk.
Blessings,
Sarah
Self-driving cars available in half a century? Are you kidding--that's your solution? What a slap in the face, on top of your insult to Forereel. And websites *can* be made accessible? Much of the internet isn't, my doctor's system isn't, and that's just one example, and that isn't likely to change, yet I need to access it, today, not in five years!
Daigonite, what a lot of bs excuses you set out for *not* helping blind people, in any practical way! You'd rather sit home and indulge in your own self-centered muddle of invented problems and useless guilt. Your guilt should be down to your unwillingness to engage in any practical way with people you claim to be fascinated by.
Clearly, you have no inkling of just how exhausting it is to rely on technology, constantly, or the fact that skill and comfort level with it isn't universal, among blind people. No, contrary to what you say, computers/software is not the be-all answer to granting us independence.
You don't know the delay caused in travel, by the necessity of stopping to consult an app, for schedule info that may or often may not be accurate, or available, or that you can't hear well, because there's so much traffic noise nearby. Do you have any idea how long it would take to browse, object by object, a grocery aisle? Surely, you are sharp enough to have thought of this, so knowing this and putting it forth as a solution, you, Daigonite, are intentionally just being rude and insensitive. No one can realistically shop that way. It is a great benefit to have a sighted assistant at the store, and to drive. The Iphone will never replace human interaction that people need--and these are only a couple of instances in which it is a benefit. This contact is an important element not to be blithely disregarded.
Yeah, certainly a blind person can keep the house, maintain the yard, do laundry, without help, but what you haven't considered is that it is helpful to have a pair of working eyes to glance over the room, clothes, etc. to see whether there's some overlooked ball of fur in the corner, or stain on a sweater, or if a garment is looking too worn out to continue wearing.
Take two minutes, with your precious eyesight--as opposed to the ten scanning and rescanning might take, to read the jumble of medicine bottles in the cabinet that once had a system, but have somehow gotten mixed up. Despite one's best effort, things can't always be planned and organized to perfection. Apps, and good independence skills ARE necessary and great, but will never be able to replace a helpful person.
D, Really, what you're saying is that you just can't be bothered, and instead of being honest about that fact, you'll be rude and imply that we, the blind people, are just lazy and unwilling to use the technology.
@daigonite, interested in specifically what you find so interesting and admirable about being blind? Give us some specific examples so that we may better understand.
Hi5 - That's a great idea. Unfortunately right now I don't have the time to do that since
I currently work full time. I probably would consider it though if I go back to college.
I've tossed the idea of quitting my job and going back to college to be a mobility
instructor and help me get an actual degree under my belt but it's pretty risky
considering the instability of my current situation.
Pooka - I'm not really sure the best way to answer this question. I do feel like I should
be blind but I think that there's more to my interest in the blind than that. I remember
when I first met my first blind person it really blew my mind what he could do and it
was like saying, "if this happened to you, it wouldn't be the end of your life". For
example, when I first walked with a cane, it was very liberating for me because when I
try to walk with my eyes closed I run into things. Sure, that still happens with a cane
but it's a lot less. The problem with a cane is that it's conspicuous and people would
wonder why a clearly sighted person is using a cane, especially considering most of my
time is in places where people know me, like work.
It's not like I see you guys as my specimens or anything, that would be weird and
creepy lol. It's more just like, wow I can really do things that way. But if I did start
doing that without actually going blind, people would be really nasty about it.
Violet Blue, considering that you consider my posts sarcasm, uneducated or outright
insane, it's very hard to take your posts without a grain (or rather, a mountain) of
salt. My point was apparently entirely missed. It's true that things suck right now
and that's unacceptable, my whole point was that the experience can be improved
and accommodated for and there's no excuse for the poor level of accessibility. My
role is better filled out by trying to fix these issues. My point ultimately is that there
is a lot of room for improvement and the situation can be improved - it sucks now
but it doesn't have to be that way.
Listen to yourself - you're complaining that technology is difficult to use, so you are
telling someone who wants to improve that technology, make those problems that
you have to deal with, that they're "lazy" and "don't understand"? Have you possibly
considered that the reason why technology is a nuisance for you is because it's
poorly designed? Technology literally can be adapted for anything and your ignorance
to its potential is what makes you feel that way. Again, you're arguing that I should
simply accept status quo - why? Why should I just accept that the world should stay
the way it is?
This isn't to mention that while I don't have to rely on this technology, I have
frequently used it, including in cases where I was forced to use it because of strong
spike BIID symptoms. I am familiar with quite a few of the problems. And you want
to take that person and discourage them from improving that situation because you
simply feel uncomfortable with who that person is? You're unwilling to even attempt
to empathize and understand their emotional state because my existence happens to
rustle your jimmies?
If you want to treat fear, guilt and shame for realizing that you are a complete freak
of nature as "laziness", then I highly recommend that you call those who are losing
their vision slowly that their hesitation to accept their vision loss and their fear of
learning these things as "lazy" as well.
And despite all of this, it wouldn't change a thing! I'd still have this desire to be blind
that I can't smother. Regardless of the accessibility situation it wouldn't change a
damn thing. So what's your point in getting upset over all of this? Shouldn't you be
more concerned about removing these feelings than simply being critical of them?
This is not to mention that I already assist the blind in a meaningful ways. I don't
make much more than most of you make on SSI and most of that money is burned
on things most of you don't have to pay for, such as gas and car insurance, but I've
still invested hundreds of hours, unpaid, in producing accessible software, assisting
my friends over skype, helping them with school or work projects and providing
general support. I have a completely open arms policy to anyone who wants it and
I've been that way ever since I've participated actively in blind communities. We can
also talk about how I want to gain certification as a mobility instructor. I'm sorry
that I'm unwilling to go up to complete strangers or spend huge amounts of time and
money that frankly I don't have to do something that I don't even have the
resources to do myself - and to be honest, I think that you would feel the same way
if someone barked this kind of crap in your face. To be honest, I don't owe anyone
anything because I didn't choose to be like this. How would you feel if I claimed that
I owe you something based solely on something that you can't control? Oh, yes,
because you're blind, you owe me the hours of time to teach me how to live blind,
completely unpaid. Don't care if you didn't have a choice, you still owe me it. How
does that make you feel?
I'm 22 years old. Not some middle aged adult with stability, a family, a high paying
job. I'm someone who is scraping by to live. I'm someone who has had to forego
eating many nights in the last 6 months because I simply didn't have the money. I
have almost no family I can turn to. This is after working 40 hours a week as an
underpaid software developer. You expect someone who already contributes in the
ways that they can and expect more from them simply because I'm what you think
is "lazy"? Get over yourself.
A lot of my fears with learning these things are because of my situation. But all I am
asking for from any of you is just taking an attempt to understand.
Think about what you're saying for a minute, put yourself in that person's shoes and
try again. I understand that trying to empathize with someone who wants something
that you don't want is difficult but I can't control it just as much as you can't control
it.
Wow, now it seems the blind club has gone from placing incredible demands on people to gain membership, to complete despotism where they experience orders on how to live one’s life constantly barked at them.
Wel all I can say after following this topic a bit more:
There's an awful lot I actually do not know about the situation. I have never been sighted, and so I don't know what is harder or easier ... I have always thought that being suddently blind would render someone quite disoriented, similar to what a flashbang or other loud explosion does to anyone. But that's not how you describe things. I don't get the identity / identify as stuff, but some of the younger chilluns in my immediate influence claim I never will.
The thing to always bear in mind, Daigonite, and you should teel this who whoever you know has this disorder:
even though someone goes blind and has a job, they'll never know when they're going to lose it. And when one of us loses our job, we can't just go grab a taxi cab driving job, a stockroom job, etc., no matter how independent one is. no matter how one feels about entitlements usage, for BIID people or otherwise, you've got to recognize the whole idea of entitlements is a mere illusion. They can cease whenever society's collective mind says so, or be reduced to give some to some new group who is a bit more popular now, or even be revoked because there's just not enough jack to go around and make it happen.
I say all this because you're a very intelligent person and it sounds like you do a good job of thinking ahead on things.
Well I don't really sense any sort of genuine entitlements and nor do any of my BIID
friends; if anything it's seen as more of a step that feels like needs to be taken to
relieve the symptoms than anything. It is really depressing to me though how much the
perception of the limitations of the blind really is.
I honestly think that's why people tend to be more willing to cut blind people - if you
already have a preconceived notion that someone has a level of uselessness to them,
AND they need special tools to do their job, well, that's just a recipe for disaster
waiting to happen.
No, by so-called entitlements I mean any government program a blinded individual would then potentially qualify for, against their will, once their job ends for any / every reason.
Oh okay. Yeah those are a joke. I've had a friend had to deal with the whole system
because BCBS decided to screw him over at his job. Was a complete nightmare. I wish
I could go up to those higher ups and slap them across the face. Ugh.
Daigonite, honey.
You missed the point about technology VioletBlue was explaining to you.
It isn’t that she’s lazy, or unable, it is it simply doesn’t exist, and in many cases no matter how far we are along in being able to develop things, some things are just not possible.
Poorly designed technology has nothing to do with the base problems a blind person faces.
Laws of physics get in the way of being able to hear your voice controlled device when it is noisy with big trucks and such passing you buy in heavy traffic.
Even if you’ve got on a Bluetooth headset that blocks out the sound, you now have cut of one side of your guidance system.
Some people, even the seeing, loose directional ability if they can’t hear on one side if they can’t see.
Even for the seeing, these bottles in the medicine cabinet maybe be difficult to read due to them being smudged, or the steam from the shower wiping out the print. Sometimes you don’t actually read a label, because you see the color of the pill. You know this.
Sometimes the pills are marked.
Technology will never solve everything, and it will never replace the human interaction as pointed out to you.
I’m highly skilled technology wise, and if Amazon decided to change the website so it wasn’t accessible for my screen reader, I’d be unable to shop.
Right now, they’ve changed the method of downloading music, and taken away an accessible tool that was working.
I know how to get around that, but how many people are going to be like me?
Even people that can see perfectly have problems operating technology. I help them all the time.
I personally don’t expect you to help anyone, you said you wanted to, so I outlined how you could right now with basic skills, no technology required.
You are working 40 hours, and you are 22 years of age, and can’t eat.
You need to quit that job, in roll in college, and live in the dorms for a while until you can get work study.
Maybe you can find one of your blind friends to move in with, and go to college to be that mobility instructor. Someone that knows how to manage financially.
They help you, and you help them out too.
You don’t have to pay car insurance, nor even have one. Many seeing persons don’t, so that is a choice.
At 22, you want to use a bull dozer to dig a hole for your flower seeds, when all you need is a 2-dollar hand shovel. Smile.
You are blocking things that really aren’t that difficult.
An example of that, is your desire to use a cane. You could simply use one every day. When asked why, you say, well, I’m training to train the blind.
If you are going to study to be a mobility teacher, that is one thing you’ll do.
But again, you are not ready to be blind, not even if you have an accident.
You can see, and you have every reason you can’t do this or that, because you don’t have time, or money, or, or, or, or.
If you were blinded tomorrow, you’d still have this problem, understand what I’m saying?
You’re not eating, but you’ll need expensive technology to buy your food. Smile.
I’m not being mean; I’m trying to get you to understand.
Honey, at your age, you can get free therapy. You really should investigate this, and get in.
Daigonite, here is the thing: you could not be more wrong in your assumption that technology is the biggest barrier for those of us who are blind. That is awfully short-sighted. Because, the reality is that it's the daily tasks we cannot easily complete that are the biggest barriers for us. Tasks like not being able to read printed mail that contains our private health information, Social Security information, ETC, that we have to get someone who has working eyes to read because they are able to see and we are not. That is a huge problem and that is just one of many daily tasks where having someone around who had eyes that work would make our lives so much easier/more efficient.
Daigonite, have you thought about what a vulnerable position that sort of thing leaves us in? And on a regular basis at that? You can see, so you wouldn't face that problem as a sighted person. However, if you made yourself blind you certainly would.
To the person who said there is a serious problem if someone cannot walk out of their house and to a nearby bus stop or store, such a statement is made out of pure ignorance. Not everyone has the same abilities as one another, but if they are a grown adult and need help, they are the ones responsible for doing their best to get whatever help they may need.
Oh, and suppose Hi5 paid for dinner. Some conversation, reading his mail, and him answering a few questions.
You eat right? Smile.
Uh, I don't really buy the mail one. Mainly because technology actually could solve that. But ok.
I'm not saying it can solve all our problems, but a whole bunch of them if we learn to use it effectively. Now, if we talk about the prohibitive cost of some of this tech, that's a whole other story.
It solves it to some degree but not completely yet.
Some contracts and such still come in paper form. These must be filled out, and physically signed.
It depend on what type of business you do, and financial business you do as well.
Even if you had all the tech to read them, you can't write with it.
Suppose you only get two contracts a year. Now we are looking at cost.
Even if you have piles of money, if is to expensive to keep equipment around that does maybe two contracts a year. You could simply pay a college student $20 to do them for you.
While I do not agree with Violet Blue's intense lack of compassion when it comes to the BIID condition, she makes a lot of very good points regarding the reality of being blind especially that no technology will ever ever compensate for human eye sightt.
No pros and against here. If there's simply no treatment for this disorder, what can you do? But just wanting to point out, no-one who is sighted, in my opinion, never ever has a right to say how easy we could have it; you have no right.
sorry; that was meant to be "no pros and againsts" here.
Rachael, VB's opinion is valid, whether you agree with it or not. I'm sorry, but I'm tired of this line of thinking where people consider someone voicing a very strong opinion as the person showing a lack of compassion, or otherwise being wrong just because that something happens to be different than what the majority here believe.
I still do not understand this "disorder" and I would never in a million years support someone deciding to make themselves blind. That doesn't mean I can't encourage people who think this way to get the therapy they need to help them through this and hopefully into leading a happy life for who they are now.
Also, I don't know why people keep saying technology already solves most of our mail-reading problems. Obviously you don't receive important mail that contains your private and confidential information, because if you did you would know that not all scanners and such read correctly if at all.
ForReal I'm all woman lol. I understand, Daigonite. I thought of a couple more things that might help. How about creating and promoting a local meatup group. I imagine you feel more comfortable interacting with others who understand what you're going through and doing so might be theraputic for you and your peers. The other thing is, maybe not me, but someone closer to you who is blind. You might negotiate some time to hang out with each other and you could wear your contacts and have a sort of coach to help you navigate the ins and outs of living with no vision for some time. Combine that with Forreal's suggestion of saying you're a mobility or rehab teacher in training if anyone asks. You mentioned offering to help some of your friends on the net with technology (great thing, by the way) Maybe split that time between my suggestion and what you normally do? If nothing else you would be even closer with the comunity you admire. I do still think it'd be a good idea to give a little assistance of your own in return as appreciation for giving you the opertunity to have a taste of our lives. Just some ideas to consider. Ultimatly its up to you and you have to work it around your lifestyle. In any case I wish you all the best.
Sigh... I'm not saying that life is easy for the blind (I'm not
really sure how I implied that at all), all I'm saying is that
technology can be used to improve every day living. Yes,
it's difficult but it can be improved by utilizing
technology. I think some people here are confusing
current day technology and improving that, when I'm
trying to say that technology can be utilized in ways not
currently used to make everyday tasks easier.
Tech isn't just your computer or smart phone, its pretty
much any device that anyone uses to make their loves
easier. And a lot of issues with blind independence is
rooted in technology not being properly adapted. Most of
the problems mentioned in this thread have theoretical
solutions through tech. This isn't to mention that the
tech isn't the best since resources on producing it are
much more limited than the general public. Most of what
everyone else is saying here can be improved with proper
technology.
Smart phones however have a ton of potential to
completely eliminate some blind devices if they were
utilized to their maximum potential. So I think that trying
to untapped the potential of a smart phone is one of the
more productive ways to go
Also, I don't want anyone to think that doing stuff for the
blind is a liability. I enjoy it although I am just one person.
My problem is people saying that by sole virtue of me
having this condition that I owe the blind community
anything. I don't. I can't control my condition and
claiming that I'm required somehow to return to the blind
community is nonsense. Even if I did nothing and
avoided the blind community my problem would still
exist. Most people with my condition are very limited in
what they can contribute.
Chelsea. I don't know why you keep going on about the
vulnerability of the blind. I understand, not on a personal
level but through the many friends I have, how vulnerable
they truly are in society. That changes nothing. That
doesn't change that technology can be used to improve
the situation drastically, that most issues with blind
independence are social and technological issues, and
most importantly to me, it doesn't change my condition
in the slightest. A lot of people are bringing up reading
mail as a counterpoint but it's important to remember
that mail in of itself is technology, a paper device with
print to share messages. Because the blind can't utilize
this technology without serious problems it's
inaccessible. That's still a technology problem though
and something that would be improved by improving it.
Other complaints regarding how expensive these tools
are is also rooted in technological issues. Again, these
things would improve drastically with better technology,
so what if it's not currently here yet? That doesn't mean it
can't be here in 5 years. And that's my point.
In regards to your idea Hi5, I still can't really integrate
physically going over to someone's house for that in my
schedule or budget.
Sorry hi5 I didn't read your profile. I'm not even sure why I wrote the he in the post, that assuming I would say. Smile.
Will you pay for dinner? *grin*
Sure technology can and hopefully will be improved, but look at the time line from where it started, to where it is now, to where it might be in that 5 years. That is might!
Next, you have to have everyone able to use it, and no matter what or how easy a thing might be for one person, it won't be universal.
I’ll give you an example. You are visual, I’m blind. You and I are going to wire your home and add some new electrical plugs, lighting, switches, and other items.
I’m going to give you all the tools I’d use to do this task, or technology. I use them all the time.
Now, I’m going to sit on the couch and sip a beer. You’ll do the work. You’ve got the technology, right? You should be able to do it with no problems at all.
Technology won’t and doesn’t account for human error either.
As to your condition, maybe in 10 years, technology…
Do you see that point?
You are suffering today, and you’d like relief today.
As for the blind, some support from the seeing world makes our lives that much easier, and I don’t mean anything technical.
It took the seeing world to create the technology we use daily.
Hi5 is taking me to coffee. We walk in to the local coffee shop she likes to go to.
She has no idea what kind of coffee I like, and if the place offers it.
She orders her drink, because she’s been to this place before. I don’t know what they offer.
The waiter understands the blind are really independent, so waits on my selection.
I ask, do you have French roast? The answer is no. I ask how about Columbian blend? The answers no.
I ask, can you tell me what you do have? The answer is, well sir, we’ve got apps for the iPhone or Android, and we’ve got a digital selection board right over there for your reading pleasure. I’ll return in about 5 minutes for your selection.
I know you blind people have technology to help with these things.
Or the answer is. Sir, we’re a small local shop. I’m sorry we’re not equipped with the technology you require to choose your selection, and it is just too busy for me to read them to you right now.
The shop two blocks away has all the technology connection for the blind. You can go there.
Smile.
Daigonite, you still seem to be undermining how problematic blind people's daily lives are due to the barriers many of us have mentioned. Wayne is right on in trying to get you to understand and accept the hard fact: inaccessible technology is not the only thing preventing us from accessing basic things that you as a sighted person automatically have easy access to all the time.
For example, today's technology cannot read blind people's banking information that gets sent in print if it contains a ton of numbers; hell, even a bank account number, card number, ETC, cannot be read to the blind even with the progression of today's technology as simply as you seem to think is possible.
Get another scanner that can read that information, you say? Why, when you are a friend of mine who lives close bby and can see to read the print to me quickly? What if it is a notice that needs to be answered in a timely manner, but oh I'm blind and my scanner won't read it. Do you really see that flying with people who need those documents signed or agreed to ASAP? I don't.
If you truly think it is that simple for us to get things done, then it should be that simple for you to start using JAWS regularly, shouldn't it? I think so. You already have it on your computer after all, so why the hesitation?
Sure we are using you as an example of the sighted person who could help us, but that is because you are the one we're directly communicating with here and now. However, the way we present things could easily be applied to a real friend of ours who actually lives nearby. That is what we are trying to get you to see, is that these are not hypothetical situations, but real life situations that we face on a regular basis which could be made much easier if someone like you who was sighted took the time to help us when and where necessary.
Sure you don't owe anyone anything, whether they are sighted or blind. However, you came out here and started talking about this condition, saying you wanted help. You have received countless suggestions and ways to help you start living as we who are blind live. Yet, all of those things seem to be continually met with such resistance by you which is causing more frustration among us, and is the very reason I went off on you in that one post. (I remember you doing this sort of thing some time ago in another board topic) where you posted that you would like some advice on a situation with some of your friends, you received helpful advice, but then you dismissed it as quickly as it came to you. That is exactly what seems to be happening here. Why is this? What exactly is it that you are looking for? Because I for one do not know anymore.
Buy dinner? I do one better than that for her. I'd take her shopping at the local supermarket and make her dinner, all in the dark of course...lol! If you live close enough to public transport, we could even take the bus I do it all the time with my huge suitcase. I even lugged home 8 gallons of water a few jars of koolade and 2 bunches of bananas on the bus. Or deal with paratransit neither option is great, but at least you wouldn't have to worry about gas. We'd do traveling, shopping, paying, cooking, eating and clean up, all in one simple thing that as forReal said, you'd do anyway. You could either join me in the experience, help with it or observe. something as simple as asking a friend of yours to meet you at the grocery store might even show you what common problems we have and if you wanted to, you might work on some kind of technology that could eliminate that problem and maybe even become rich off of it. As you've said, the possibilities are endless. I'm certainly not putting the burden of liberating the blind on your shoulders I sense you feel like that's what we're trying to talk you into, but if helping blind individuals is something you're passionate about these are just some more ways you might educate yourself on what goes on. Good luck :)
Sigh... for the last time Chelsea, I'm not saying that life isn't difficult or that all of blind
existence is based on using computers. I know this even from my limited experience of
being blind. I'm not that stupid. My only point is that technology can be used to
improve those parts of your life as well, but because of limitations in resources such as
developers and money, it's not available yet. Technology is extremely adaptable and
doesn't just mean "I'm using JAWS on my computer" and with the fact that people
basically have portable computers via smart phones, many tasks such as reading things
can be made easier. Of course it won't be as efficient as eyesight but that's because
eyesight is able to manage many more things at once. If you don't understand what
I'm trying to say at this point and you're going to continue saying the same thing in
circles then I just don't know what to say at this point anymore.
Ultimately none of this even matters in regards to treating my BIID because it doesn't
change how my condition functions. Regardless of the limitations of the blind or lack
thereof this condition would still cause me issues. My only point was that one way I
manage my condition is by creating ideas for accessible software because it allows to
utilize my eyesight and my interest towards doing things the blind way to bridge this
gap.
lol hi5 sounds like you want a girlfriend more than anything. Just kidding hahaha. I had
a short period where I did live with a blind guy and it was actually pretty nice but I was
too timid to learn much from him. I opened up a little bit a while later when another
blind individual taught me the basics to cane travel, and although I have told him that I
don't mind helping him out/him helping me out he's been kind of... well, introverted in
the last few months. So talking to him is an impossibility. The only other local blind guy
I know is also just as introverted. I'm sure there's more out there but again because of
my busy schedule I don't really have the time to go out and venture far out to assist
them; if that was something I was doing I'd rather have more of a lifestyle dedicated
to it, but I don't think my personality goes well with a caregiver. Again I think my
resources are better utilized in technology but I do consider mobility instruction as an
alternative as well. Balancing between these two things I want to do is pretty tricky.
Your limited experience being blind? You have NO experience being blind, Daigonite, and there is no "blind way". Merely having ideas about what you MIGHT or COULD do is of absulutely no service to anyone, it's just filler for your own thoughts. You're not truly addressing anything, not filling any need, just doing a lot of talking.
I'll address more of this muck later, or perhaps not--it hardly seems worth devoting time to--but Daigonite, just go outside and use the damned cane! *laugh* What's the big deal about that?
What I'm reading into your posts is that like most people barely out of adolescence, you seem to believe the wide world is focused on yourself, just one little person, when in fact it is not. No one will care if you walk down the street with a stick, or any other object. Why would they? They are strangers, whose own preoccupations and lives are infinitely more crucial to them than whatever you are doing. People get up to all sorts of bizarre behavior in public, carrying a cane should not phase anyone. Many people don't even know the significance of that cane. You clearly don't care what anyone here thinks of you, so why are strangers on a street any different? Buck up, be a grown up, and go outside and do whatever you want to do. As long as you're not hurting puppies, who cares?
I think you're admonission to "get over yourself" is a piece of your own rather peculiar advice you may want to take.
Thanks, Chels, and Forereel, for seeing the point I was making.
And no, of course I am not incapable of compassion; I'm not sure why anyone would conclude that, I'm just unsure why it is I'm supposed to feel sorry for Daigonite.
I don't think it is Daigonite we are suppose to feel sorry for, but the girl that had the drain cleaner put in her eyes.
I said before I'm sorry for her as a human, but I'm not sorry because she must deal with being blind.
Now Daigonite, has a choice. She doesn't have to go that root, and this has been what all my post are about.
I'd agree, she's had 0 experience being blind, and I hope she understands that no matter how good technology gets, it won't solve the daily problems of being blind.
I've not gotten in to the human side of it yet.
Like that "You just want a girlfriend"
That can open up a whole different side of being blind that no matter what technology you have, unless it can alter brains, simply won't help.
Guess I'll date me one of these Android robots, huh? Grin.
Plus, there’s this feeling I have that technology and its possibilities is being overly remanticized. I might actually get that self-driving car in another 20 years, but that still won’t immediately resolve the vast majority of the transportation issues I have. Not to mention that the self-driving car isn’t necessarily a foregone conclusion. Frankly, I’d be willing to bet that advances toward eliminating blindness will occur before the self-driving car. But I’ve been wrong before. Oh the hell well of Delbertness.
So Daigonite, since you seem to know it all and be absolutely certain that technology really is the biggest barrier we blind people face, what is your solution to fixing the daily barriers we encounter? I assume you have one, since you're ever-so-certain that technology that may or may not exist in 20 years is what will be most beneficial to us. What about now though?
Like Wayne, I need to read my mail now, I need to wash my clothes now, I need to go to the store at least once a week in this lifetime rather than in another one. (Sorry for the sarcasm, but the point is sorely being missed, Daigonite) and it is really not that hard to see where we are coming from.
Wayne, on one hand you say you feel sorry for this woman who intentionally put drain cleaner in her eyes, and on the other hand you say you don't since she'll now have to deal with being blind. I agree that she'll now have to lie in the bed she made, but what are you really saying? Either you feel sorry for her or you don't.
I can't imagine why anyone would feel sorry for the girl who put drain cleaner in her eyes. She did it as a result of poor practice. Both from herself and her psychologist. As for you, Daigonite, talk is cheap. You're scared of what your piers think of you, but pretty much all of the blind people who have responded to you on this post are calling you out. either go and live like a blind person for a few days; I mean live completely like a blind person, don't use vision at all for at least two-three weeks, then see how you like it. Since you say technology can be adapted to everything. In other words, put up or shut up.
We're way off point here. While I agree with many of the things said, it comes down to whether or not you believe BIID is a real thing. I believe BIID is a real thing, but that doesn't mean I can wrap my head around it. As someone who has lost her sight, I find it appalling that someone would even contemplate taking on blindness for life. But I'm looking on it from my life experience and not from someone who experiences psychological and perhaps physical pain from his or her eyesight. I don't get it for those with BIID who think they should be an amputee. We're not supposed to. We are more or less designed to survive and in most circumstances, having all of our senses and body parts is the best scenario for negotiating our world. Hell, we have evolved as we are for that reason!
It is also very dangerous to try to remove/uninstall our natural hardware and equipment, another reason most of us react strongly to this condition.
Just out of curiosity, how many of you could do what Aaron Ralston did? He is the man who went climbing by himself and got his arm stuck under a huge boulder. After a day or three, he had to decide what to do-no one knew exactly where he was. He chose to cut off his trapped arm with a not so sharp knife. Cut through the skin, muscle, through the very tough rubbery tendons and then snap his bones. This was to save his own life. Now, I don't think I could do that even to save my own life.
One of my former neighbors told me if she were ever diagnosed with breast cancer, she would refuse treatment and die from it because she wouldn't contemplate living with having one of her breasts removed. She wasn't some young girl, she was in her early 60s. That is almost as outrageous to me.
The world is full of crazy, dysfunction and disorder and chaos.
I can't wrap my head around BIID but I believe it exists as a real issue. I don't condone the drastic measures taken but I've also never experienced it, for which I am grateful.
Daigonite-you've got to understand that for most of us, it is just way too difficult to empathize with you since our experience is so different. We experience the trauma of the loss of our sight or maybe just the injustice of being born into a world designed for sightedness by people evolved for sightedness. We live in that world every day and while we might become more adept at navigating it and dealing with the effects, it is forever. You can't really understand that because you aren't in our shoes. That is okay, we can't really understand you because we aren't in your shoes, either.
I'm not trying to be condescending and Silver was right in some other thread when he said that age doesn't invalidate an opinion, but 22 is so very young and you seem overwhelmed and depressed. Things can get better but sometimes it takes a long time.
Whoever suggested the Meetup group for those with BIID had a great idea. You talked about the few blind people you know being standoffish-we might not be the best group of people to make your intimates.
Good luck to you. I sincerely hope that you find a way to manage your BIID and that you don't take risks with your sight or your health. Try not to be too hard on yourself.
That last post makes a world of sense on this issue. I admit I have some very taboo and unorthodox thoughts of my own re: health / healthcare / ending it when you want, etc.
Thank you, VH. That was a breath of fresh air. The constant barking had gotten tiresome.
Funnily enough, I think some of the harsher things some blind people have been saying in this thread may in a way be contributing to Daigonite's difficulties. You puff and blow hard enough, and you're going to intimidate people. And hey, did you see that bit where Daigonite said she was "too timid"? Not everyone is an extrovert. Not everyone can just shake off what others think of them. Not everyone is so supremely confident in themselves and their "rightness" that they think they're untouchable. I still think you've got to try, but it's a lot easier for some than it is for others.
I'm pretty much in complete agreement with VH here. I wouldn't want to recommend someone hurting themselves in order to limit the suffering brought on by BIID, but I wouldn't want to deny them help if they did make that choice and then had to live with it. We all make choices we have to live with, and believe it or not, they're not all good ones. If we got blacklisted for the first bad choice we made, I think we'd all be pretty fucking lonely and desperate.
Ah, okay Chelsea.
I tend to feel sorry for foolishness. It makes me sad the person didn't have better guidance or support.
However, once you have made your choice no matter what you were told, you must live with it.
I find it difficult to feel sorry for a person that had something natural who gave it up for the type of life I live daily.
I can't feel sorry for the next blind person that is dealing with exactly the same things I'm dealing with, can I? The best I can do is give them some support and tell them what I do, if I'm not having the same issue, or if I'm in a better emotional state cheer them up.
I do admit, I tend to see the humor in life to overcome the hardship.
Like the statement “You just want a girlfriend” pointing to Hi5’s post.
I know dating no matter what some say, is difficult for many of us. and I know the difficulties first hand.
But, that made me laugh. I laughed all day about it.
Hi5, being all woman, might vary well want a girlfriend, but if you have been watching daigonite’s post, you had to see the technology humor in that statement.
It’s like, girl, just get a robot! Grin.
We blind people face statements like this all the time in different aspects of life.
You invite a lady out to dinner, her first worry is, how are you going to manage eating. Will she be embarrassed? Smile.
I put my face in my coffee cup, and eat with my hands, but all that’s beside the point. Do you want to have dinner with me honey. I need some company.
On cutting off my arm, I'd cut it off, but that is because I have two choices isn't it.
"One of my former neighbors told me if she were ever diagnosed with breast cancer, she would refuse treatment and die from it because she wouldn't contemplate living with having one of her breasts removed."
I find this very hard to understand. She isn't using them. They're not limbs. They're useless, tinder, fat-covered glands. I would go the other way - if one breast is threatening to kill me remove them both.
Voyager, for many women they are far more than that. They are part of our sexuality, they can bring pleasure, they are part of our identity, our femininity. They are life sustaining for our babies (although I grant you, not for a woman in her sixties.) They are a source of industry for the brassiere industry-where would Victoria's Secret be without them? (LOL)
But it is all a matter of balance-they are important, but for most people, life outweighs the breast.
VH, thank you, post 155 is so nicely said.
Chels, if you read my post properly, I said I liked her points that she expressed but I thought her opinion was harsh.
Come on peoples, especially Chels, learn to read; it will make your lives much easier, I promise.
I also agree with you with the reality of technology thing, so before you ahve a go, stop and think very carefully what the author of the post is saying so you don't get mixed up.
Someone said it so well; I don't for a second deny the BIID condition exists, but I can't wrap my head around it and this could be the same for most of us here.
And VB don't get me wrong, I'm sure you're a compassionate person but it just didn't seem it when it came down to the BIID thing. But, a lot of people don't agree that invisible disabilities or illnesses exist because they can't see them.
VioletBlue, don't let anyone tell you that you are wrong, heartless, or whatever other term people wanna use. You expressed your thoughts on this topic just as everyone else has done, and I for one cannot understand the intolerance of "Only post to this topic if you will use nice words because the 22-year-old who created this topic is so sensitive" crap.
That being said, I am not suggesting that anyone pick a fight here. What I am saying is that people have different ways of expressing themselves, and some people's word choices are more harsh than others. However, harshness does not equal being wrong. It is simply different.
Still, I cannot begin to understand or agree with the statement that this disorder is a real thing. The things Daigonite experiences are obviously real in her mind, but as someone recently said, talk is cheap.
This thread is filled with countless ways that Daigonite could start living as we who are actually blind live. She continuously tells us how those things cannot be done and why, which makes it hard for anyone (including myself) to take anything she says seriously. Again, that is why I have been as harsh as I have and I'm sure the same goes for others as well.
There are resources out there that would help Daigonite (going to therapy) as a few of us have mentioned, using a cane (yes it is illegal in many states to use a white cane in public if you are not truly blind) but she could paint the cane another color and use it the same way we do. I'm sure she won't have time for that either, but I thought I'd throw it out there anyway.
rdfreak
started this topic actually Chelsea.
I can understand or believe the condition is real, but I've said, if you don't try, and I don't mean a little, you'll not heal.
Who's going to arrest anyone walking with any tipe of cane? Smile.
It's not happening.
True on the other colors. She could use any other one.
The only problem she'd have if she tried using it to get on say a bus for free. Otherwise, she's good.
I think we've beat this topic to death. I just love how some people judge Daigonite, for having a condition she probably didn't ask for, Chelsea. And, I have to ask, since you're so hard on her about this, anyone who's been hard, what do you feel about other mental health problems? Take Autism. Is that a joke too? I know it's not, because, I lived in a foster home with one kid with the condition, then moved to a foster home with two other kids with that same condition.
What about Bipolar? PTSD? Are our Vetrans faking that? Are the Domestic Violence Victims, faking it? I want to hear your answers. Since Daigonite's "INVISIBLE," disability is so "Crazy," for a notion, what about the others?
Asburgers? Autism Spectrum Disorders?
Someone once told me: "Blind people are the most judgmental group of people I've met!"
And, I think the person who said this, is one of them. However, this thread, and others, make me understand.
You know I don't completely fit in with the "Blind groups," but the Mentally Ill, have no trouble accepting me for who I am, and they can see. So, Chelsea, and others, think on that. These people can see, and don't give a crap that I'm not just blind.
Now, this post isn't meant for all of you. I see a lot of posters being supportive. It's this stupid critical attitude, and that's why I never got back to Cody and Chelsea on another thread. No matter what I say, they'll pick it apart. Because, some blind people have nothing better to do, than tell the rest of the blind: "This is how things are."
Frankly, I know I can't change that. However, listening to this, makes me understand why Society puts so low. You don't think the sighted folks notice the critisms? Hmmmmmmmmmmm? Really? I just have to ask.
Dear all,
My name is jewel Shuping. A lot can be said in that short sentence, and I will not
reintroduce myself because most of you know a great deal about me.
I confess, I haven't read all the comments in this topic... There are very overwhelming,
either in their benevolence or in their malevolence.
I would like to say that I do not regret who I am, though I do regret how I became
myself. My only real regret about who I am is that my family has left me out like trash.
Please feel free to ask me any questions you might have and I will try to answer them all.
Also, I can be reached on Skype on the weekends and on Tuesdays and Thursdays. I
reserve the right to hang up on anyone who is abusive, threatening, or otherwise
behaving in an unwanted way.
Thank you all for your attention to this post.
Jewel
Welcome to the Zone, Jewel.
No, I wouldn't say I know a great deal about you, just the few details already discussed.
Oops, posted too soon.
To Jewel, anything known isn't from you, directly, so as far as I'm concerned, whatever you say is a little more relevant. Since you're here now, please do introduce yourself.
Talk about the recent articles, or don't; that's up to you. I, for one, am looking forward to getting to know you.
Jewel, you are a member of this community. What others say, I really don't let their words determine who my friends are.
Blessings,
Sarah
Jewel
, I know nothing about you other then what has been said.
Sure, if you read, I've got my opinions, but I'd also like to hear whatever you have to say.
I don't expect you to defend yourself, but it be interesting to learn what you think.
I'm totally sorry you choose your way, but now you've got it to live with.
Let's talk.
Abuse on Skype should never be allowed.
I'd not contact you that way unless we became real friends.
You aren't the public example, if you understand me. Smile.
Well, as I said, I am Jewel. I am thirty years old and have been blind for seven years. But
blindness is not all of who I am.
I love reading, especially Mercedes Lackey and other fantasy authors. I like sculpting with
polymer clay, which I have been doing for four years. I am a full time student at a local
community college, in my last semester for my Associates degree.
I can't speak to all the articles about me, since there are just so many. However, I can say
that most have the gist of the matter. I took my own sight with the help of someone who
called himself a psychologist, and my only regret is the loss of my family. I am trying to
get my mother to talk to me enough for family counseling, then I will work on my sister.
But it isn't going very far.
I am who I am, and I am happy with my Vlindness even though the rest my life makes
me miserable.
Jewel
Ok, I've been away from this topic for a while, so lets cover a lot of ground
here.
First, please stop treating our lives as if they're pathetic and sad. wayne,
you're probably the most guilty of this. Treating us as if we're completely
helpless. Those people who can't get a block away from their house are pathetic
and helpless and I have no sympathy for them. Your example of timing how
long it takes to get the milk aisle is simply silly. Walk in, go to the customer
service desk, ask for help, go to the milk aisle. Try timing it from the point you
get the help, I'm pretty sure it'll be close to the same as a sighted person. If
your doctor's online stuff is inaccessible, trying picking up the phone, hitting this
series of numbers called a phone number, and asking to make an appointment.
we've been able to do that since the early twentyeth century people, come on.
I'm so tired of blind people acting as if our lives are so hard. It makes me
sick. Our lives are pretty damned easy here in America, or in England or pretty
much any developed country. Want to claim your life is hard, go to vanuatu or
Zambia. Try living as a blind person there, then you can tell me that your life is
hard. But when you have even the capacity to complain that paratransit was
late, fuck off with your complaints that your life is hard. We really, as a
community, need to stop our bitching about how hard things are and start
actually working toward making them better.
Which leads me to my next point. Dagonite, sorry if I'm misspelling that, is
suggesting that we work towards improving the technology we have. She's
suggesting we do something that we've been doing since we have flint knives
and sticks. Something doesn't do everything we thought it did, we make it
better. We need to do something we can't do, we make a tool for it. Why are we
ripping the throat out of someone whose saying we should keep doing that?
would you have ripped the throat out of the first iphone salesman because the
technology wasn't perfect yet? ARe you guys really that shortsighted, or are you
simply upset because these two women don't conform to your exact
specifications of what blindness is?
and finally, Jule and Dagonite, again sorry for any misspellings, first let me
thank you for having the courage to come on here and talk about your
conditions. I know that's not easy at all, and I have the utmost heartfelt respect
for you for doing it. I would also like to apologize on behalf of the blind
community. We're often told as blind people that we're ambassadors, that we
represent the blind community for everyone we meet. If that's true, I think
some people here have made a piss poor performance. We aren't all like this.
we aren't all going to shun you because we can't understand your condition. We
aren't all going to mock you for something you can't control any more than we
can control our blindness. we aren't going to hate you simply because we
wouldn't have chosen to become blind. None of us would choose the life we live.
If we had choices, we'd all be billionaires and sleeping with Ariana Grande three
times a day; or maybe that's just me. Anyway, we aren't all like the people
you've seen here.
So, though I might not be able to do much, let me say this, if you have any
questions, or need advice on anything at all, send me a message on here. I'm
always happy to suggest technologies, manners of doing things, resources, or
just be a shoulder. I'm always happy to do that for anyone who needs it. Jule
you've been blind for seven years, so you might already know some of the
technologies, but if you ever have a question, or their's something you're
struggling with, don't hesitate to ask. If I don't know the answer, I can help find
someone who does. And if the answer doesn't exist, maybe one of you can work
toward changing that in the future. Someone has to do it, it might as well be
you.
This is messed up.
But you see Cody, I don’t think being blind is the end of the world.
I was once a seeing person, so I can understand both sides of the coin.
Maybe the blind people that can’t get a block are pathetic, but they exist. I know several of them.
They have reasons why they never trained for mobility. Some are frankly lazy, others never had the opportunity due to parental sheltering, others, simply don’t navigate for whatever reason well.
Some have physical limitations; in the form of the place they live. The store is a block or two away, but they’ve got to cross say a 6 lane street to get there, and I’m talking with a cane, not a dog.
Some people can’t handle that Cody.
They can’t walk a straight line, so are fearful of getting hurt in traffic.
The thing I was and am trying to get across, is being blind isn’t all about the technology aspects of living, it is about day to day life.
You’ve talked about going to the store. Sometimes you get a bag person that is really helpful.
Sometimes the bag person doesn’t read well, or something, so you don’t get exactly what you wanted. Example, you want Pepsi, but once you are home, and open the can, you taste diet Pepsi. Sometimes you must wait half hour due to them not having anyone available for you, or not making them available.
I’ve personally had to leave and come back another time, because after waiting 45 minutes I had better things to do.
I talked about the loss of family, and friends, or the lack of there support, and Jewel has that exact issue.
She has not changed in to a bad, or undesirable person now that she’s blind, but the seeing world, no matter what we brave blind people say, have a different view of us.
No, not all, but it happens often.
She’s having difficult with her own mother.
What I am trying to do is helpdaigonite, or anyone else wanting to be blind to understand they probably should seek therapy, and far better than Jewel received.
You are absolutely correct, that we in America and industrial countries have it easy. I talked about that as well, but we still have great, and I mean great limitations apposed to the fully seeing.
If for example, you are use to walking outside, putting your leg over your Harley’s seat, and taking a nice ride on a lovely autumn day, and you give that up, you are going to face some mental setbacks, if you are already struggling.
It hurts to loose family, friends, or not be able to have as many only because you’re blind.
I understand you have no concept of what I mean about a mortorcycle ride, but it is really freeing.
Everyone doesn’t have the same experiences, and someone needs to point them out.
Technology is wonderful, I’ve said so, but it can never replace your mother’s love, or give you a friend, or cause a group of college students to want to invite you to the football game or that guy or girl you hear and talk to all the time, be willing to go out with you, not because they don’t like you, but because they can’t get past you being blind and how they’ll deal with that.
You could say, that we can be more social, and such, and I always suggest this, but everyone won’t have the self-esteem to do this.
Even for us that are self-esteemed full, it is still different from the seeing people’s experience.
Oh, and about Ariana Grande , I'd love to sleep with her too, but.
Here's how that go.
I've got plenty money. I'm generally good looking, and can hold a conversation.
She thinks I'm a great guy, but, well, he's blind. What on earth will my friends and famly think. How is he going to take me on a date? How does he eat his food? How is he even calling me on the telephone? Smile.
I've seriously been asked some of these questions when trying to set up a date with a seeing woman. Not the telephone, but you understand me.
I'm not apologizeing . Facts are facts.
Before I get jumped.
My dating example was not about my attribute’s personally; I was just building an example of how it might be.
I know women experience rejection based only on them being blind as well.
Silverlightning, I don't need you to apologize for me, and just to make it clear, I, VioletBlue, am not shunning anyone. I took issue with some of the things Daigonite said, but have made my point and am finished with that line of conversation. I also welcomed Jewel here, and before she even spoke up, said that I'd be polite to her, if we met. I'm glad she's joined the board.
SL, fine, if it enhances your life to think of how much better off you have it, as compared with people in other countries, have at it. But that helps me not one jot, and I have as much right as anybody to grouse, when things are tough, as does anyone else posting here. My being content and happy-go-lucky isn't going to solve the problems of unprivileged souls, either!
Yeah, we could all be a lot worse off. So what?
I am immensely grateful for the technology I have, and for what is possible. But that doesn't diminish the flaws in that technology, or the barriers that exist. I hope whoever knows how to do such things can make needed changes, but that wouldn't be me; I don't have the knowledge to create apps and websites.
Sure, there are less convenient ways of accomplishing tasks, and the fact that it requires additional steps is frustrating. I can bitch about that, if I want to, and I don't think I should be branded "pathetic" because of it.
When I call the dr's office, the busy person who takes my call has an attitude, because why don't I just log in and read my chart and test results online? Make an appointment online, like everyone else? So, I have the slightly demeaning task then to explain why I can't do that. This feels like a lifetime of having to apologize to people for inconveniencing them! One needs to vent about that, sometimes!
Same for placing an order for some clothes, online, which I attempted to do, this very morning, unsuccessfully. The website is inaccessible. Yes, I can view items, but there's no way I can figure to add them to my cart and check out. I have to wait and call during business hours. I've encountered two sites this past week, with the same problem.
No, none of these examples are life-threatening, but they add up to making me feel shut out of the world designed for
sighted people.
I'm not by nature a negative person, and I don't make a habit of complaining about such things to just anyone, or on a
daily basis. It's come up in this thread, and if there's anyplace to let down one's guard and commiserate about such annoyances, it should be on this board!
Do you tell all the sighted people in your life that they could have a harder life, so don't voice a complaint?
If they're complaining about things that are easily fixed or worked around,
you're damned right I do. Yeah, some things about our lives suck. Some things
we just have to deal with. So you can't order clothes online, so you sometimes
have to wait a little while, and sometimes we have to work with absolutely
stupid people, and sometimes we have to silently wonder how they manage to
wipe themselves without help. Guess what, everyone does, blind or sighted. You
grit your teeth, you find ways around it, and you get the fuck over it. I don't
accept bitching from anyone unless there is nothing you can do about it. You
want to complain about people treating you as if you're four, I'm all ears. I hate
that. You want to say that it makes you any less of a person, I stop being all
ears. I don't let anything define my life, not my blindness, not people treating
me as if I'm a child, not girls not inviting me on a date. People don't invite me
on a date, I'll invite someone else on a date. They don't invite me to the football
game, I'll take myself to the football game. I'm so tired of hearing blind people
saying that they need sighted validation like this; its disgusting.
And Wayne, those people you know who can't walk a straight line, should
learn how to. I hear excuses like this all the time "Well, I don't have good sense
of direction", "I don't have good mobility skills", "I can't walk a straight line".
Cry me a river, pull your pants up and get over it. You don't know how to do
something, learn how to. You suck as spacial reasoning, guess what, a lot of
people do, they live with it. You can't cross a six lane street, either find a
different route, or call a cab, find someone to pick you up, or find a service that
will pick you up. Everyone has to do that, even sighted people. So I don't accept
it as an excuse. You either deal with it and move on, or you're being pathetic
and whining, or you're a child. We're adults, its time we started acting like it.
Now, yes, its tragic when people's families shun them because of their
blindness, I hate it, but it doesn't have to define us. We always have a choice,
but we're usually afraid to make it. Your family doesn't want to be part of your
life, don't let them be. You don't need them. I can promise you there are people
who will want to be if you just find them.
He's got limitations no matter what he thinks.
Even that milk run to the store is more time consuming.
Cody should do the test. Go to a supermarket with a seeing friend. Start at the door and tell me how much longer it take for you to get your milk.
On websites, I often times help people with such things.
If you post the shopping sites, I'd be happy to take a look at them and explain, if possible, how you make them work.
I am not always successful, but I've got a good track record.
It is one of the things I do, help others with this sort of thing.
Jewel, I don't want to put you on the spot, so decline to answer this question.
Can you go a couple blocks and shop in a market without assistants?
Can I walk to the grocery store and buy something by myself? The answer is it depends.
If I am just buying a few items, like a gallon of milk or some bananas, no problem. But if I
am getting a full list of groceries, I get a shopping assistant like most would. I can go to
customer service and ask for one by myself, too. My roommate was font for two weeks,
and I had to do my shopping and meal planning without him. I had no problem planning
healthy meals and getting a shopping assistant to help me get everything. I layer broke
my eggs and had to go back for more. I did that without assistance.
The person who said I am unable to do things ys wrong. I get around my college campus,
take notes in class, shop online and in stores, and get around the city without too much
trouble. I even walk in a nearly straight line now.
Jewel
Yes Wayne, I have limitations. Sure, it may take me a little longer to do
certain things. So guess what? I allot a little more time to do those things. I'm
aware of my limitations, and they become minor annoyances at best. I'd hardly
call the fact that I have to wait a couple minutes before I get to shop a
limitation.
Besides that, your condemnation is applicable to everyone, blind, sighted,
visually impaired, subtropical pigmies. Everyone has limitations. Sighted people
have car insurance they have to pay for. They have gas to buy. Visually impaired
people have to take light conditions into consideration. Everyone has things they
have to take into consideration in life. They all manage to get over it. So why
should I accept your excuses, or your excuses on behalf of your friends?
I am just going to make a general statement here...
To every action, there is a reaction! It will either be in agreement or supporting your choice or it won't. You can't however dictate or say that a reaction is wrong because you don't like what is been expressed.
Personally speaking, I can't understand why someone would take such drastic measure and I wonder about the ethical or the lack there of regarding the psychologist whom took part in this. It is however, your life to lead and your bed to lay in sort to speak.
Sure we all have limitations, but the blind have more of them.
Some blind people have more blind related limitations then others, but they have them.
If you take the exact person you are and add sight to that person, he'll be more productive and have an easier time with his day to day life.
I am always proud and happy to see the blind person that has a good outlook on life and the belief he or she is just as able as the seeing, but soon that person will run in to some roadblocks that simply can be gotten around no matter what they believe.
It does help them continue on however.
Believing and trying is one of the things that has kept me going and happy, so I understand it.
Thanks Jewel for that answer.
I've honestly not read a bunch of articles about you, so I have no idea of how your life actually is.
Best way to get to know you is ask you. Smile.
Even at that point, I couldn't say I know you completely until I met and spent time with you, but it is better then just reading an article.
Ok, i'm divided on this, so hear me out.
First, yes, there are certain limitations we face that specifically relate to being blind. Should someone who is planning to blind themselves, or is losing their sight be aware of these? 100% yes they should. If nothing else it gives them the opportunity to think about how they will work around them.
However, should we use these as reasons why blindness is a shitty experience? No. Because guess what, being short can be pretty fucking dreadful too. I have to ask for help all the time not because i'm blind, but because I'm short. I can't even reach the top shelf in my closet here at school because of it. And guys, I'm not even a tiny person. So what I'm saying is that we all have physical limitations.
I do also think a lot of these could be worked on. Even people with very poor mobility can learn to function with the right training. Yes, I have to ask for help when I go into stores because I'm blind, no, most sighted people don't. But honestly it's just not a big deal. Yeah, I have had people who are useless help me, it's the luck of the draw. But I don't feel like it's the huge issue some people are making it out to be.
Being blind certainly isn't all sunshine and roses, but I feel like that some of the issues we face are being blown way out of proportion as well.
Also, I will say there are things you can't get over or get past.
Cody, you've never had the benefit of seeing, so many things you'll never miss, because you've never had them.
Someone like Jewel probably misses a few things.
I do.
They don't rule my life, but from time to time I do think about them when I'm wanting to do something to get something.
I don't get depressed or anything like that, but I realize I'm missing afew things, or I should say lots of things.
Again, everyone will have a personal experience with being blind, and it depends on lots of factors.
Ok, so my biggest question is, why did you decide to tell your story now?
as childish as this might be wayne, my only response to what you've said is
"boo-oho, welcome to life. Sometimes it sucks. Get over it."
Aggotrain, I am telling my story now because Barcroft just approached me with the idea
of telling my story. If they had approached me sooner, I would have told my story sooner.
But they just discovered me through a friend and approached me with the story idea.
Make sense?
Jewel, it was brave to speak up, especially as you have no doubt figured out, most of what is presumed the blind community can't wait to throw one another under the bus. It's a response to resource scarcity, all animals do it.
I can't pretend to understand your situation, as one who is born blind.
Cody, I’d agree with that attitude, I’ve got it.
But if you are realistic, you have to say that being blind isn’t the same as seeing, and you’ve got limitations you’d otherwise not have.
Again, because you’ve been blind for life, you’ve not lost anything. You never had the benefits of sight, so no matter how I explained to you what you are missing, it won’t compute.
I’d say blindness cuts off about two thirds of what you had if you once could see.
I don’t think of anyone as pathetic from not being able to do specific things, because I understand you’ve got many factors, or reasons.
Sure, they lazy need to simply get off their asses, but other than that, it depends.
Here’s my question for Jewel.
You understand your condition, not the blindness, but the thing that drove you to want to be blind.
Would you cancel daigonite or anyone else to go ahead and just do it?
She has the same choice you had at this point.
Wayne, I've been blind since birth and I do grasp what I am missing as a totally blind person. Not in a literal sense of course, but you are 100% right in saying that we have it much harder than people who can see. (Not being able to drive, having to take several hours to go grocery shopping when people who can see just walk right in and retrieve what they need, not being able to use a computer without speech output software) just to name a few things.
I'm not saying whoa is me or us in the blind community as a whole; I'm simply realistic enough to admit that yes, life as a blind person presents far more problems than being able to see does.
I think Cody's latest arguments is hopeless and here's why.
Everyone seems to cope with their blindness differently - whether it's later on in life or from birth. -- some people do take it in their stride a lot more than others. No-one is right or wrong in how they feel so I suggest that particular argument stop right there because it's degrading.
I am on the same page as Chelsea here. I can only try and imagine what I miss, being born blind.
And as others have said earlier, we can have the best screen reader that can ever be made, we can have audio described media, We can have the best mobility instructor, .. the list goes on ..
but nothing can even come close to feeling like we have it equally and fairly.
It's so wrong therefore, to suggest to anyone to "get over it"; In fact, it's an absolute outragious statement, not that I expect much less from a couple of you here.
On another note, Jewel, welcome to the zone and my very contraversial board topic. I will repeat what I said in an earlier thread in case you missed it.
I don't deny BIID exists, but I can't wrap my head around having become blind. I am not going to condemn you for it however; I just sincerely hope for your sake, you don't regret it later in life because, as far as earth goes, we do not have a second chance.
I find myself continually asking, is that Psychologist still practicing? Gee I would surely hope not.
I am skeptical that this Jewel person has actually joined this site. If it is her, how did she find The Zone? What are the names of the family members who are not in contact with her?
I fully admit it is degrading, but sometimes degrading is what is called for. If
you have two blind people, lets say me and Wayne. wayne and I are on equal
levels as far as I can tell. we're both intelligent, physically fit men, with no other
aspects that would make us unable to do something; Wayne isn't missing his
left leg from a Union cannonball, I'm not suffering brain trauma from a railroad
spike accident. none of that. we're two, perfectly normal men, who happen to
be blind. Follow me so far?
so, lets say I come onto the boards and say "I can't get from my house to the
liquor store down the street." wayne, rightfully, asks why I can't. If my response
is "I can't walk a straight line", Wayne's response should not be that that is a
valid response. That isn't a valid response for us. The proper response is "So
find something to trail along so you don't have to walk a straight line by
yourself, and learn how to walk a straight line." If my excuse is that I don't
know where it is, his response should be to get a GPS. If my excuse is that its
across a busy highway. His response is to either find a different store in the
opposite direction, or call some kind of service. There are no excuses for blind
people anymore, not in this country. we have gotten to the point where very few
things truly limit us.
Look at what Chelsea said, she gave long store times as a limitation. That's
not a limitation, its simply a fact of life. We have long store times, sighted
people have long DMV lines. Sometimes, when dealing with the public, you have
to take a while to do what you're trying to do. Its not a limitation, its simply a
fact of life. A limitation would be us not being allowed in grocery stores. That's a
limitation, having to take a while is not. Using screen readers is also not a
limitation, its a method of overcoming a limitation. I can't see my watch, so I
wear a braille watc that I don't have to see. That's not a limitation, its an
adaptation. adaptation is what human beings are all about.
At this point, in america, without having some other form of physical
limitation like not being able to walk, or not being able to hear in addition to
blindness, we have very very few limitations. We have a few things to which we
must adapt, but we have very very few limitations. Now Chelsea, if memory
serves, is exempt from this because she has physical issues. Sorry if I'm wrong
here chelsea, but I think I remember you having balance issues of some sort.
So that would be an excuse for certain things that is perfectly valid. She can't
live in a tenth floor walk up because her legs simply wouldn't allow it maybe.
That's valid. Wayne saying he can't live in a tenth floor walk up because he's
blind, is not valid.
Is this making sense to everyone? Because it really is a positive message. its
life changing once you realized how limited you actually aren't, and how much
you're just thinking you're limited. Look at it in a new way, and the whole
blindness thing goes out the window.
It's still a limitation in the sense that maybe if you need more time to do a thing and don't actually have that time on a given day, you are limited from doing whatever it is. Say you have an hour to shop, but you know it's going to take longer than that...while if you were sighted you could do it in forty minutes. On a technical level it's a limitation; mentally though, seeing it that way is probably going to do more harm than good.
Likewise, saying "get a GPS" or "call a service" might be limitations of a sort depending on your money situation. And if you happen to live in the country rather than in the city, without a lot of public transit, then you may be even more limited.
So I'm mostly agreeing with Cody here, but approaching it from a slightly different angle. Sure we have limitations that sighted people don't. To suggest otherwise is kinda silly. But rather than focus on them as a big stack of bricks we have to wrestle with, we ought to try to find ways around them if we can.
And Chelsea, I guess you missed the part where Daigonite has said she knows Jewel? I guess you missed the bit where it seemed like they were at least passingly familiar with one another? But hey, I guess you make a habit of not reading what other people say. And if it were up to you, many disorders wouldn't exist because you'd never seen them or couldn't understand them; let's just say I'm glad you don't actually have any power that means anything.
Seriously. Next time, before you go spitting doubt and saying you don't think it's Jewel, how about either 1. asking or 2. reading what others have written? Because once you realize that Jewel and Daigonite know each other, Jewel coming to the Zone is not really so farfetched, now, is it?
Worst case scenario: it's not Jewel at all, and it's someone impersonating her. But innocent till proven guilty, am I right? Far as I'm concerned, we only go up that road if there's a reason, and so far, your only articulated reason for doubting Jewel has just been knocked into a cocked hat.
I honestly would try to help anyone over come the limitation they felt they had.
If they couldn't walk a straight line, I'd try, and have tried to figure out how they could still do what they wanted without walking the straight line.
That is how I learned, that sometimes no matter what device they have, or training, or whatever, that thing they wish to do isn't possible, or it wasn't possible to fix the problem of walking the straight line.
They only had one store, the root to that store didn't have any guiding walls, or whatever.
A GPS units nice, but it can't tell you when to cross the street, or take you straight in a line when you are walking across.
The only solution was to have them get a neighbor, or for them to take a taxi.
So, we worked something out, but it wasn't something they could just do say at 1:30 in the after noon because they felt thirsty.
If they were visual, they could.
I'll admit for a time I had the same opinion as Cody, why can't you? I learned it just isn't same for everyone, and they aren't pathetic, just limited due to being blind.
I'm a blind man myself, and whenever possible I help others even if I need to walk with them to the store.
I had perfectly seeing people around me for a long time, and I couldn't get them to say turn the sound back on my computer when they turned it off.
Before I knew how, I'd have to wait maybe a day or a few hours before they'd help me, even though they were sitting right there.
It takes a seeing person about 30 seconds to look at the screen and see, oh, the problem is the sounds are muted. If you are blind, and not computer savvy, you'd have to call a repair person to figure that out.
That is a frustration you never have to deal with when you can see.
Again, I'm not saying my life, or any other blind persons life is bad, but as others agree, we simply have to admit and accept we are limited.
Oh now we've got someone claiming that this Jewel person has really joined the site. Where is this new user? I want things to come from the horse's mouth. I want answers to the questions I have posed; I am not looking for people to say they know something is true just because they feel like replying to this topic.
This Jewel person says they came here for people to ask questions; well, I'm asking questions and seeking answers...
Jewel did post but her posts have been brief. Fair enough, it is she who could answer your questions, not the lot of us. I, for one, am pretty confused on this whole issue.
Um, so why are we now doubting her existence on here? She may have been told by Rachel about this conversation so decided to join.
Why are we doubting someone's existence? Because we have no idea that this person is really the same lady who willingly poured drain cleaner in their eyes and told the world about it, that's why. Why does it matter, you ask? Because if someone is gonna be talking about a mental illness like this and therefore trying to educate the world about it, we the readers of this topic need to be able to trust somewhat that this someone is being truthful.
I suppose you could
Skype with her Chelsea.
She has invited people to do so, and has her Skype info in her profile.
That doesn't make her exactly real, but it is a start?
No Wayne, a start would be for her to answer the questions I have posed. If I wanted to take another avenue, I would've done so. That being said, talking to someone on Skype would not tell me a thing. Answering questions, however, would tell me quite a bit.
Really guys, are we going to now claim that the fact we have to schedule time
to go grocery shopping is a limitation? Really? Are you so desperate to be
limited by something that the mere fact you have to consider the time it takes
to do something limits you? I wouldn't even be able to say that having to plan
out the time to do something inconveniences me. I'd lose a little bit of my self-
respect if I tried to argue that. And you're claiming it as a limitation? what're
you going to claim next, the fact that you don't have self-tying shoes is a
limitation because it takes so much time for you to knot your laces? Maybe
you're holding out for the replicator from the Enterprise to make you dinner
because having to cook something is just such a limitation? I mean it takes
time. You could wait twenty or thirty minutes for something to bake. Hell, an
hour.
Please, if the best thing you can think of as a limitation is the fact that
sometimes you might not have time to get everything done you need to get
done, drop to your knees right this moment and fervently thank whatever deity
you subscribe to. That's just disgusting.
wE have limitations. There are certain jobs that a blind person is never going
to get. We have obstacles in the form of ignorant sighted people who think
we're helpless. We have barriers in the form of textbooks that are inaccessible.
Those are limitations, and you're going with the fact that you have to budget
your time? Is your life really that difficult? Give me a fuckin' break.
The shopping was an example? You understood that, right?
I'm happy to see you've got a good outlook on being blind, but you can't apply this to everyone, nor can you apply your travel skill level, patients to everyone.
Chelsea. She has answered my questions, so I'd suspect when she logs on again, depending on how much of the topic she reads, she'll answer yours.
Even if she answers your questions, the only way you'll know if she's really as she claims, is to get to know her closely.
I’m going to take this for you Cody to a different level.
This is personal or specific to you.
You’re a gun owner.
Owning a gun probably makes you feel more secure. You have a sense of power, and you feel you can protect yourself.
You like guns, because of the power you’ve read they have, or you purchased the specific models you own for these reasons.
Weight, power, balance, other factors you’ve read about these models have.
For the most part, and that is about 85%, you can’t use them, or the reasons you own the specific model don’t apply to you.
Your security and power are mainly false.
If someone broke in to your home, you might get lucky and shoot them, but the chances of that are diminished greatly.
When you go to the shooting range, and put on the ear protection, the only pleasure you get is the feel of the gun discharging, and the smell of the gun powder.
The balance and weight mean nothing in relation to the specific reasons these things are good, because you can’t hit a target, nor practice to get better at it.
For all you know, you could be shooting in to the floor at the range.
Sight would give you a world of options you never will have.
The security and power factor goes up 100%.
You can go to the range and practice your shooting skill. The weight and power, and balance now mean something, because when you are shooting at still and moving targets, it makes a difference in how quickly you can adjust to correct your aim.
If someone broke in to your home, and you’ve been keeping up on your marksmanship, your chances of shooting them anyplace you like are great, because you can see them.
You can enjoy the color, craftsmanship of the weapon, the grain in the handle, the color and depth of the steel.
Using different loads will make your weapon work differently, and you can see the results of this when you are shooting.
You can take your weapon hunting, and enjoy the power of actually hitting a difficult target, and seeing the results of that shot.
You can add a scope, so you get different views of your targets, night scopes for shooting in low light situations.
A blind man’s ownership of a gun is just about useless except for his feelings about it.
Patients won’t make you a better shooter. Practice won’t make you a better shooter. The most expensive, well balanced gun won’t make you a better shooter.
Thinking positive won’t make you a better shooter.
The person that really wishes to get the blind man can put his gun in his hand and tell him I’m going to rob you now, and do it.
That person needs no special skills or mental ability. A child could get to you.
Because you can’t see, the other person has an abundance of ways to get to you that he or she’d not have if you were sighted with your gun.
That is what I call a limitation based on you being blind.
Gun ownership and licensing is sort of a waste of money for you.
Sure, you get the pleasure and the mental high from it, but that is all. It is worthless in your situation
A limitation, by definition, is something that imposes limits.
If it takes me longer to do something, and if I have a window of time not great enough to do that thing, and if the greater time is due to my disability, then technically my disability is a limitation.
As I said before, the difference comes in how you deal with it. Yes, technically it's a limitation. No, looking at it like a huge barrier that you can't possibly overcome isn't going to get you anyplace. I'm all about being as realistic as possible here.
And Chelsea, I can't imagine that you don't realize how belligerent and high-handed you sound right now. A new user comes to the zone claiming certain things. Not only do you subscribe to a guilty-till-proven innocent mentality, but you act as if Jewel owes you. She owes you nothing. Absolutely fucking nothing. If you had proof of dishonesty, or if she'd hurt you directly, then okay, yeah, get confrontational if you think that's going to help you. But since none of those conditions have been met as far as I know, step down off your little portable judge's bench and fade back into anonymity.
Honest to god. Sometimes people make me seriously wonder.
And Jewel, if you're still around and still reading this, I apologize. This is not the sort of thing you're apt to want. I'm sure you can handle yourself and all, btw. I speak up only because I despise it when people get jumped on and treated with open hostility simply because something they've done is controversial.
Yes, I agree with all of the realistic posts. Cody, I get where you're going with your arguments, but to completely ignore that you're dependent on other people to deal with life, and to say that the time it takes to depend upon other people isn't a limitation, you're kidding yourself. Not trying to be personal, but no wonder so many of us have all of these depression issues...
I don't know if all of this is to show that you stand up with these transabled people or what, but to completely ignore the facts is ridiculous.
Ok, a couple things. First of all, Wayne, I can hit a target just fine thank you.
There is much more I enjoy about shooting than feeling the gun go off in my
hand, so your analogy falls completely flat. There are lots of blind target
shooters and blind hunters. They even have organizations for them. I'm not part
of one, but they do exist. So your example falls flat.
Now, you said that I can't apply all my abilities to everyone, and I ask why I
can't. If someone is simply blind like you or Greg or Lakeria, why do I have to
accept some bullshit excuse? There's absolutely no reason you can't learn
something. I suppose you could claim that you've never had the opportunity to
be taught, but that is only an excuse so far. Eventually, the person who wants to
learn is going to find a way to be taught. You call the government and you insist
on getting someone out to teach you. You move to a place with better
transportation. You fix your life. That's what adaptation is all about. so why
should I accept any excuses? There is absolutely no reason you or greg or
Lakeria can't be just as good at mobility and general living skills as I am, and
vice versa. None.
Now, the level of acceptable limitations goes up when you add other physical
disabilities. A person who is blind and in a wheelchair has more leeway than a
person who is just blind. Or a person who is blind and deaf. Compounding the
situation complicates it, but when we're talking about people like you and I,
there are no excuses wayne. I accept none because the world is not going to
accept any. You either learn, or you get left behind. Those are your choices. No
one is going to care that you have limitations. They're either going to leave you,
or you're going to be a burden on them until you learn or they leave you.
Now, lakeria, yes, we have to depend on people. That's not a limitation, its a
simple fact of being social animals. Everyone has to depend on someone else.
Do we have to do it more often than other people, arguably, but not very much
more. we take cabs and public transportation, but those aren't blind only things.
We need training on how to get around, but that is usually something for when
we're younger, when everyone needs training on how to do things. we have
special technology, and you could argue that's us depending on others, but its
no more than other people depend on them for their technology. we don't really
depend on people more often than anyone else does, blind or sighted. Its just
that our dependence is a bit more visible. But does that really matter? No one is
independent in this world. So why is that a limitation unless there's absolutely
no one around?
Its really starting to seem like you guys are just desperate to find a way in
which you're limited? If you spent half as much time thinking of ways you aren't
limited, or thinking of ways to get around them, you'd be a lot better off.
You can hit a target, but that target has to be specificly set up for you.
I'm not being successful in getting you to unserstand that you simply can't expect everyone to be as you are, and the reasons are related to them being just blind, nothing else.
Instead of looking down on them, my policy is to try to help them without ranker, or critical opinions.
Shep has the opinion you just learn to get around things, but flatly, some things are impossible, and some of these impossible things are really simple for a seeing person.
I've said, I don't think it is a bad thing being blind, but I personally realize I've got some roadblocks I can never get around period.
I don't let these bother me, I just figure out something else, and drop them from my life.
It is just my life, so I don't get depressed, nor make excuses, but I do face the facts.
I don't feel like I need to make an excuse because I'm blind. Some things can't be expected of me, and that is just how it goes.
It is possible I can repair your car, keep it in good condition, clean it, and anything, but you can never ask me to drive it across town and deliver it to you.
Again, I am really glad to know you have such drive Cody. I have said this is a good thing, but it has to be put in to prospective.
Maybe with time you'll understand that.
Just clarifying here.
Of course we have some things we can't do. I'm not saying everything can be gotten around. I'm saying that most of the things I would see as limitations only start out that way. We can usually take steps to minimize the limitation imposed.
I, for one, am not making excuses, and don't expect pandering. I'm talking about limitation in nothing more or less than a literal sense.
A sighted gun owner is likely going to be a better shot than a blind gun owner, all other things considered equal. If you wish to compete against sighted individuals in target shooting, that's probably gonna be a limitation. Does it matter? Are there ways you can compensate for some of it? Well, that depends on how badly you want it and how big the gap is.
It is disgusting that people willingly jump on someone because hard questions were asked. Why should we believe that this FerreKittyKat user is the person who blinded theirself? Why is that accepted without question, without a second thought? Oh and BTW, anyone notice Daigonite and this FerreKittyKat person have not logged on here in about the same number of days? Seriously, how can people not be suspicious?
Well if you want to be paranoyed all your life about the identity or otherwise of who you're talking too, that's your sad state of affairs.
How do we know any of us are who we say we are? wow guys.
Anyway this topic is getting done to death so that's me out of here.
Bottom line is, Cody, I still stand by my previous post; Just because you're content with things in relation to your blindness, doesn't mean everyone is, but, it is pointless saying this to you because your entertainment seems to revolve around coming on here to these boards here to degrade, belittle and downright attack everybody who you want to and those opinions you strongly oppose. Might I remind you before I go that this is not how the real world works. If you decide to have debates with people in school, work or where-ever you happen to be if you do get out that is, you'll lose a lot of friends and potential ones if this is how you behave.
But again, why am I saying this? No matter how many times someone pulls you up on this, this iratic behaviour of yours continues. It is called the "internet" why no and it is so easy to hide behind keyboards when you know you'll never meet a person.
People like you (and fortunately, there's not many of you on here), is the reason I never take these boards too seriously any more.
yes Wayne, there are certain things you are never going to be able to do. That
statement is true of absolutely everyone. What makes you special?
Hey, Chelsea. Ever thought that your attitude has driven Jewel off because she can't be bothered dealing with the bullshit? Ever thought that your attitude and that of a few others has done the same for Daigonite? She, after all, was around for the majority of the posts in here and was taking great pains to explain things extremely thoroughly. She owed you nothing and gave you plenty, and was repaid for her trouble by posters who attacked without looking and show suspicion without merit.
That might be true, or it might not. Maybe Daigonite and Jewel just have lives and haven't been bothered checking in here. Maybe they feel they've said all they need to say and don't feel beholden to you or anyone else. Maybe their computers both blew up. Maybe they're on vacation. Maybe they're sick. Maybe a whole lot of things. Ultimately it doesn't matter, because if you're going to go so far as to increase your suspicion just because they haven't been around for a few days, then there's no help for you. That's paranoia in its purest form, and as I've said numerous times before, I am so, so glad you don't actually possess any power or influence in the real world.
You're crying foul because I have the temerity to jump on your back. Maybe that's because I see your suspicion and paranoia and intolerance and abhore them. I'm not afraid to tell you what's what. Really, after all the times you've done similarly to others, I don't think you've got a leg to stand on anymore. Now, if I was abusing you or attacking you based on trumped-up evidence or a personal grudge, that'd be different. If I do that, i'm an asshole. But I'm attacking your behaviour, which is deplorable and which might be leading specific other users to not want to read or respond to things being said.
I can tell you that if I was Jewel, I'd want to either rip your face off (figuratively of course) or lay low for awhile. Your responses are childish, assumptive and combattive, and all for what? Because Jewel has a disorder you don't understand and you think you're owed things by her simply because she shows up? Last time I checked, you weren't an immigration officer, so stop acting like one.
Wait, guys, its been six hours since Greg posted his post, and Chelsea hasn't
responded. Chelsea's fake. So we can all relax. Chelsea doesn't actually exist.
Its just a fake post, since she hasn't responsded in an arbitrary time frame
which I decided on right as I was typing this.
I'm some lost Cody.
I've not given the impression I thought I was special, or the blind special, did I?
I do understand, as I've stated, that you will think differently, because you've never had the experience I've had.
I'm talking sight, to no sight, nothing more.
With that only, I still say that seeing and not seeing causes great limitations, no matter how you compensate.
I sincerely understand the drive, and the push, and the grit you have, but in the seeing world, you will not be equal.
Many things are against you due to lack of education in the sighted world, not your abilities.
The rest is physical, or natural.
But, we are going to have to strongly disagree on this one. That is okay.
I do hope you give some thought to why others may not be able to do X or Y before labeling them pathetic though. But, again, that is only my wish.
You are a strong person, and that is great. Others are just as strong, but nature gets in the way sometimes.
I tend to take the stance when someone tells me I can't do this or that, to help them figure out a method instead of belittling them.
That is if they are open to it.
Sure, I'll have my opinion, but I try to look at the complete picture first.
Yes Wayne, you have done that. Because you've said how much more difficult
our lives are than sighted people. You act as if we're something special because
of all these limitations. I'm saying we're not really all that liited. People are
uneducated in the arena you wish to step into, educate them. A lot of people
have to do that. about the only people who don't are white males in America.
Other than that, everyone faces discrimination. Don't have something you need,
find a way to get it. Everyone deals with that.
I see blind people all the time acting as if our limitations are solely our own,
and that's simply bull. we're no different than anyone else unless we make
ourselves different. The only thing standing in our way is us, and how much
we're willing to fight.
So, we have people standing here condemning someone for becoming blind,
on the basis that our life is so hard, and now she'll have to deal with all these
things, as if she didn't have to deal with them before. Just now, she'll have to
deal with them in the same way we do. Its a crock.
I'm not talking discrimination. I'm talking nature.
We are different flat out.
We are not special, but we are different.
You've over looked the family loss, and other personal things you can't "fight for."
You can't fight with your lost friends.
You can't fight with the girl that flat out turns you down as a serious date based on that you are blind only.
You can't fight with the menu in a eating place, because you can't read it.
You can't fight with the woods, because you can't go hiking alone on a sunny day.
You can't fight to drive.
If the bathroom isn't labeled, you can't fight right at that minute when you need to pee. You just have to take a chince, or holler in there and say, is this the men's. Lol
You have over looked many things, such as Jewel saying her life was not nice now.
I don't know all her details, and I'd talk to her about them and hopeful make it better, but I can't replace her humans.
I don't want people thinking there going to get blind, and technology is all they'll ever need to get buy. It ain't that way.
You know to add to my last post.
I get tired of fighting sometimes.
Sometimes I just want to walk in to a local bar, find a warm body that looks appealing to me, and have a conversation and a dance, and not have to explain anything at all about how the hell did you even get in here? hahaha.
That is provided I don't accidently ask a straight man to dance. *grin*
I can actually see where both sides are coming from, but I do admit I’m a little closer to what Cody is saying. And Cody, you can correct me if I’m wrong. But I think what you’re saying is that in this day and age, there’s less excuse than ever before for a person who is just blind who can’t walk down the sidewalk two or three blocks to get to the grocery store on their own. I work around a ton of blind people all day long, and I have to say that it galls me no end to see some of them making excuses for themselves. And I’ll observe that the time should be long past that we dispense with the notion that some of us are exceptional and the rest of the blind community somehow can’t measure up to the rest of society. But to the extent that my own remarks are misinterpreted as making excuses, I’d like to clarify. The point I was trying to make is that there are some things that we blind people do have to put up with that the sighted just don’t naturally have to. Doesn’t entitle us to the luxury of making excuses for ourselves, but nonetheless it is reality. The only thing I was questioning, albeit somewhat pointedly, was the notion that one would want to give up one's sight to deal with some of the stuff we have to on a regular basis. Granted those of us who have been blind since birth or from a very young age are, or should be, used to it, but it seems to me that it’s gotta be harder to go from full 20/20 sight to total blindness. I can’t imagine the transition myself, except to say that if I went from a hearing person to a deaf person, it would be devastating to me. It’s not what I want for myself, especially as much of a role as music has played in my life. And that’s only part of it. The other large part of it concerns itself with some of the things I brought up earlier. Again, we as blind people are questioned more than the sighted. Our abilities are questioned. People think they get to say things to us they wouldn’t dare say to a so-called “normal” person. A sighted person is more anonymous than I as a blind person am. And mind you, I’m not saying these are things that make my life unbearable; they don’t. My life is not unbearable or miserable, and I don’t constantly pine for sight. If anyone has read my posts, you know this. At the same time, I’m not going to shy away from the things that sometimes (and note that I did say sometimes) make life a little annoying and yes, in those rare moments, infuriating. But otherwise, I don’t think I’ve made excuses or ask for quarter from anyone. I wish more blind people thought as I do. But I will say that the way to make this a reality is to maybe make rehab better or shake the shit out of some of the parents of blind children. I also think that more than a few professionals or experts or whatever you want to call them are a lot more willing to make excuses for us, and that’s ultimately not fair to us. Maybe we are a little overly judgmental as a community, but I’ll postulate that maybe sometimes we need to be. I know I’ve bbitten my share of ass when I think someone does something stupid, but it’s frustrating when someone doesn’t seem to have a whole lot of common sense.
As for Jewel and whether she’s real or not, I think that whole line of questioning is just stupid. I’ll accept her reality on face value. Doing otherwise is pointless. I will accept that this is the person who blinded herself, or had help doing so, with drain-cleaner. I don’t know that I’ll ever completely understand it, but the fact remains that here she is in the here and now, and in this here and now, she is a blind person, however that came to pass. If I’ve been more judgmental than I need to be, I apologize for that. Short of that, I’m not sure exactly what more there is to say.
Ok, I understand what you're saying Cody, but I think Wayne summed up what I was going to say.
Also, nobody cares if the 2 accounts are the same.
Hi all, I'm Hillary Clinton and I demand that you accept that I am who I am. Nice to meet you guys; ask me any questions you like, I'll be sure and disappear after I've answered two or three (just because I can)...but it's me!! Hillary!! Your favorite never-to-be president! Oops, I mean your favorite lesbian lovin' boy-on-boy lovin' wanna be president!!
Hokay, that was fuckin' stupid.
She might win, better be careful. *grin*
As a lifelong blind personI can't comprehend why someone with a working set of eyeballs would want to lose that, but then again I don't have BIID. I won't go so far as to call her crazy. Her methods though are another matter. Drain cleaner? That just makes me cringe!
So, Ms. Clinton:
Benghazi? Email server?
We're waitin'.
Oh but Chelsea's narrative states that all atheists or otherwise non-fundamentalist Christian types must by extension be dyed-in-the-wool authoritarian lobbies. Sorry to break it to you, there's atheists on the Right albeit not the religious component, in anarchist movements, and all over the spectra. Shoving entire groups into your narrative is a bit like trying to squeeze a California redwood into an 8-oz juice glass.
she researched how she wanted to go about doing this. I think the psychologist treating her was put in an awkward position. this, I think, is one of the few conditions in which a professional would have to ask themself, "How do I treat this patient without calling ethics into question?" many doctors said they wouldn't treat her before she found this one. They talked extensively for a while before just sitting down and pouring a couple drops of the drain cleaner in her eyes. Oh, you can find a segment on youtube about this very situation in which she speaks about the process. Evidently she was angry when she woke up from surgery and could see the TV screen ... The vision loss was gradual, as I understand it.
I heard about another incident of BIID, in which a guy went to the ER, having severed his own hand. He wanted to be an amputee. The hand was found wrapped in his freezer, and he got pissed off when doctors suggested reattachment. That's just part of the condition; they identify with the disabled, and will go to just about any lengths to be that way.
a third case, (and the woman in this last case, as far as I know, hasn't found a way to have her legs removed since insurance won't ever cover it), would like to be a double amputee.
Enough said. It's rare, but it's out there, and if she comes back, I'd like her to know I admire her for doing everything possible to help the rest of society understand this interesting and intriguing disorder. Dagonite, sorry for misspeling your screen name, thank you for trying to explain, as well. some people are just closed-minded; ignore them.
I'd say I'm open minded.
I am painting a picture of how life might be and is for many of us.
Even she says her life is not good now. She posted that herself.
She developed the family problem, and some other things she didn't expect to.
I understand she was on TV a couple days ago.
As to the psychologist's role in this?
Shrink's gotta shrink.
I sincerely hope his licenses was revolked, and somebody would kick his ass, but that's just me.
If you're going to throw someone in to a totally different life, at least give them the picture before you do.
In this case, it didn't help her at all She was better off suffering wanting to be, then being.
Also a friend of mine watched the show. She says her sight went, but not all at once. I think she has some now.
Supposedly, she's going to be on Dr. Phil soon, as well. Enough said.
I know I said a while ago it was enough from me, but .. I can only imagine what Doctor Phil will say. :)
I wonder what he'll say. Chelsea, your little whatever it was, failed. It made you look like the spoiled brat that you are!
Try a glass of Maturity-ade.
All that milk you're drinking and it's keeping you on soft foods. Time for reality checkup. You got someone to help with that?
Blessings,
Sarah
If anyone genuinely believes that Jewel and I are the same person I suggest that
you engage in skype conversations with either of us. I know I have my skype public
on my profile and I believe she has hers. We sound very different. In addition we
also have very different interests. I also have other works under the same handle
elsewhere online that are clearly visual such as animations and artwork that couldn't
be done if I were blind like Jewel. Basic research, people.
It's true that she's going to be on Dr. Phil. I don't know any of the details. She had a
breakdown after the show actually was filmed but I think this was mainly due to his
conflicting advice. She seems to not really mind coming out to the world.
I can say this - anyone who takes Dr. Phil seriously is an idiot. Dr. Phil does nothing
to actually help people. If I had the opportunity to be on Dr. Phil I would use it as a
chance to call him out. 90% of what he says is "repair ties with your family" or that
kind of hokey shit. That does nothing to actually help those kinds of issues, not to
mention that sometimes families are assholes and you shouldn't be held responsible
for maintaining a relationship with bad people in your life just because they're
family.
My own issues regarding BIID have somewhat calmed down since I've gotten more
accepting of my desires. For me it's a matter of finding a comfort zone. I was
making my problems worse by freaking out over the fact that my desires gave me a
frowned-upon disorder but the truth was that my issues were more subtle. Yes, I
have desires to be blind and I think about it every day, but if I just allowed me to
take care of it by just doing some things blind it does help. I mean with anything just
do what you need to do to feel comfortable. It's true that it will probably get worse
as time goes on but I mean, I've stabilized it by just doing what I wanted to do.
Sure I can't walk publicly with a cane but I can walk around at work with my eyes
closed and do certain other things with my eyes closed. It's hardly "the blind
experience" but it's what I need to do to get through the day, so it is what it is. In
the last month or so I've made a lot of improvement here by adopting this
philosophy so there is that. In Jewel's case her condition seems to be a lot worse
and intensified by other visual processing disorders so she likely couldn't tolerate it
her whole life.
I guess what anyone else can take from this is that in almost all other instances
there are options. Hell even BIID has some options really. But if you want to do
something it grows much worse if you keep denying who you are or demonizing that
aspect of yourself. It just makes it so much worse. If you're gay, transgender, or
just someone who has a guilty pleasure, please don't let it destroy yourself.
And that brings me right back to this question you never answered.
If I told you how to wake up in a hospital tomorrow bglind, would you do it?
That is a serious question.
I've answered that a long time ago. I probably would.
I don't like to be told how to do that because I have thought about it in the past and I'd
rather not succumb to such a desire at this time. It's not that it's outside of my control
but some days it's not as tolerable as others. I think most people can relate to
something like that.
I feel like if I engage in this thread again I'm going to end up repeating myself like this
so I'm going to give it a break. I was informed by a friend that some talk about the Dr.
Phil segment was going on so I wanted to put in my two cents and that's that.
Daigonite, on walking about the workplace with your eyes closed--you do know that you'd look less silly, just using a cane, right?
re Jewel: I'm sorry to hear of anyone's breakdown. But why subject herself to media scrutiny, then?
Well the problem with a cane is that it sticks out and people would be asking more
questions than if I had my eyes closed. Most people don't notice and if they do I tell
them I'm photosensitive.
Photosensitive is in fact a thing, I learned of it keeping birds. But anyway quite a few people have that, so seems like that would be understood by anyone you tell that to.
Like so many things, I don't know what the answer is, but best of luck to you. You're smart, with your mind you'll figure something out, which is what I respect about you. Most these days are too busy demanding the government and society give them a safe space, or do this, or not do that, instead of figure out what they can do for themselves and maybe ask friends / people they know to help them out.
Exactly. I have no idea why you'd want to associate yourself with such negative media attention as Dr. Phil would provide. I can get behind the documentary--as much as I don't understand BIID, I can at least understand that nobody's going to know anything about it if everybody's stuffing it in a closet, so to speak--but it seems really, really silly to expose yourself to such scrutiny. I'm sorry, but it doesn't help her case.
I disagree. You never answered that question, so did not repeat yourself.
Probably? Not good enough. Smile.
I also disagree that walking with a cane eyes open or closed will cause anyone to think anything at all.
It be better to put on a sleep shade, to keep you from seeing completely, thought, so the question of how your eyes are wouldn't be a problem
Anyone seeing you basicly blind folded would get the idea. She is training to help the blind, or she's blind trying to learn how to use a cane.
I swear to you, what people think will even be a larger problem then it is now if you were blind.
If you just must, you'd better get use to it now.
I would rather manage my condition so that I don't feel
the need to be blind in the first place. I'm not as bad as
jewel in terms of my condition so I don't feel like I'd be
doing that any time soon.
Lets be honest - if I was facing that feeling all the time I
probably would go around pretending to be blind all the
time. My fear was that because of simply having this
condition I would need to. But I found a way to handle my
current urges and manage them without having to go
fully blind. I think anyone would agree that me feelin
comfortable and containing my condition is much more
desirable than trying to progress myself towards
blindness.
I think the eat you're looking at it is like "we'll you want to
be blind so you have to do everything the way that a blind
person does it!". Not necessarily. If I can manage the
condition by walking around blind at work then why
should I do more? I mean I understand that you have to
deal with being blind all the time but BIID and blindness
are two very different things and if pretending to be blind
some of the time handles the problem, then why should I
do more? It's like requiring that the max dose of a drug is
administered even if only a smaller dose us needed.
I’m 100% in agreement that you should find other methods or means to deal with your condition or need then going blind.
That is what my complete campaign has been based on, and why I've spent so much time talking to you.
I know what others have said, but most haven't have the benefit of sight as I have.
Even if you were well trained, and prepared, you’d be missing a huge chunk of your life.
Simply being able to see colors of things as you travel through the city is something you don’t think about right now, but would miss greatly.
Sometimes you are seeing things, but not really paying attention to the impact they are having on you.
Maybe it is a garden, it can be uplifting to look at.
If you’ve got no choice, you deal, and it isn’t a tragedy, but you’ve got a choice.
Last, I still wonder if through helping your local blind community, you’d find some solace, or the energy that causes you to want to be blind, would be mitigated? That is just an idea.
Peace, and be well. Smile.
For anyone who has seen the interview from the show, this is the only part of it that pissed me off. The thing I absolutely hate about dr. Phil is this Why is it any of his business to pry into her personal life where contacting her family is concerned? if she doesn't want that, it's not up to him to suggest a damn thing.
If anyone has not watched the interview segment, you can catch it here:
https://www.youtube.com/watch?v=_jqx9UE7IvE
While normally I don't like him, I think he summed everything up about right and have no issue with how he handled her situation. In escence, she made her bed and should lie in it.
This galls me on so many levels, but I'll try and keep it short, if not sweet.
So okay. We can't give people a pass just because their intentions were good, or because they felt cornered. You don't get an automatic sympathy card just because life's tough. Life's tough for basically everybody, for one reason or another.
But see, there's this fascinating thing called human decency. Surprisingly, it still exists. There's another wonderful thing known as compassion; we give it to the deserving and the not-so-deserving alike.
You aren't barred from receiving compassion just because you made a choice that others don't understand. If you were, then we'd all be pretty royally fucked, because I bet you there is none among us here who can say that they don't regret a single action in their lifetime.
How about I put this another way. Jewel didn't waltz out the door one fine day and start shooting heroin. She didn't play on busy train tracks. She didn't molest children, rape someone, steal from the needy, bash the hell out of an ex with a baseball bat, set her mother's cat on fire, throw her baby out a window, start a suicide cult for profit, prey on religious evangelists or drive drunk and kill someone. Those things, and many more, might have earned her a "you made your bed, now lie in it" sort of response.
What Jewel did was make a very questionable decision under serious mental duress, with the help of someone who ultimately did something they probably shouldn't have done in their capacity as a caregiver. Mixed feelings? Totally makes sense. Blackballing her because she "made her bed"? That's just the coward's way of saying "I don't think anyone else should have to deal with it". Yes. Coward's way. I said it. It neatly ducks responsibility for the very real problem of BIID by suggesting that Jewel was mentally stable when she made this damaging choice. She wasn't, not really. We could continue the good old argument about whether or not she should've done it, but it's moot. She's done it. Now she has to struggle with the consequences. Since her act wasn't criminal, didn't directly hurt anyone else and was largely helped by a heretofore largely-unknown mental issue, I daresay that an attitude like that possessed by Dr. Phil helps no one, solves nothing, and serves only to let him back away from an issue he doesn't understand. This is pretty typical "tough-love" pop-psych behaviour though, so I can't say that I'm surprised.
You know what this actually reminds me of? Women who are told that they had it coming when they get raped. Let's say they go to a club dressed to kill, they're flirty, they're having a good time, maybe they even make out a little with a guy they fancy. Then later on, this guy rapes them. People like Dr. Phil, I think, might suggest that she had it coming, or that she facilitated it. "You made your bed, now lie in it. If you hadn't done those things you wouldn't gotten raped." Bullshit.
Let's be humans again. Let's remember that Jewel, in this case, is a human with a mental problem she went to drastic means to alleviate. Are you as dismissive of people who are suicidal as a result of chronic depression or post-partum depression? Are you as judgmental of people who become alcoholics because their families were largely predisposed and they sort of got surprised into a dependency? No? Then for Christ's sake, have a little decency, and think it through before you agree with someone like Dr. Phil when he spouts crap like this.
Let's look at the facts here.
1. She met up with a psychologist in a chat room, and didn't even bother to do any checking on him from what she said.
2. When she was interviewed about her blindness condition, she lied about it being an "accident" repeatedly. I'm sorry if you think that I am compassionless, but just these two things alone make me inclined to not feel any sympathy for her.
It sounds like her family was a big part of her life in the beginning. At the very least, she could've asked them to accompany her to any of these sessions she had with that psychopath. Instead, she went, lived at his house for weeks, arranged to pour the drain cleaner in her eyes, lied about it when she was getting one of her eyes removed, and lied about it in at least one subsequent interview until she decided to "get her story out there".
The people who feel sorry for her have the right to feel however they feel towards her and give her as much support as they want to. More power to you! She probably needs it, but not from me. However, they should not expect those of us who think that this should've been handled in a completely different manner to feel sorry for her, even after the fact.
Dr. PHil is just the latest in the poop psychology er, I mean pop psychology
bunch. Tough love is like every other, just a ppop / pop one-size-fits-all
response tailored to the intellectually lazy.
Be glad, chilluns, that nobody who builds things or engineers systems for a
living doesn't do so by these poop / pop ideologies, else we would still be living
in grass huts without fire and no stone tools.
No one is saying that she did everything in the best way possible. I don't know how many times that has to be stated before you'll hear it as the concession it is. I don't think anyone here is saying that what she did makes perfect sense and should be emulated by other BIID sufferers.
But what I, at least, am saying here is that she had a mental disorder, and in the grip of this disorder she did questionable things.
By your logic, someone who lies or goes to great lengths to protect an eating disorder deserves no sympathy...and never mind that shame is often the unindicted co-conspirator which causes the lying which so often accompanies mental illness in the first place.
By your logic, someone who is suicidal and makes an attempt also deserves no sympathy.
Sorry, that's just barbaric.
You don't have to believe that what she did was right in order to believe that she deserves help, and that others in her position would also deserve help were they faced with similar challenges. Better understanding and better help would allow people in these positions to better be able to cope, hopefully. Because frankly, everything you mentioned in your last post smacks of either shame, desperation or both. Shame and desperation are two common hallmarks of mental instability being ignored, or treated badly, or dismissed by others. Shame, in particular, is an incredibly tough barrier to break, but it's often broken more easily with someone you don't yet know well...as opposed to, y'know, a family member.
So no, that doesn't make Jewel's actions totally okay and totally right. They're neither. But it should be hoped that instead of vilifying her for what she's done, our efforts should be on 1. treating her and doing the best we can to make sure this kind of crap doesn't keep happening, and 2. learning as much as we can about the disorder so that other present and future sufferers don't consider actions of the sort Jewel took to be acceptable, or worse yet, their only way out.
If all of your feelings amount to "you brought it on yourself" in a case like this, then you're simply missing the point. The issue is simply too complex to be glossed over that way.
I grew more of an open mind on this.
But I watched the Dr Phil show and just felt sad. Sad for me; sad I was born blind and had no choice.
I'm not a doctor, or professional in this matter.
But, for compassion reasons is why I went to bat, war, or whatever you all wish to call it with daigonite.
. She, in my opinion still has a choice, and I think no matter what she says, she should seek free therapy. It is available.
Even Jewels blind boyfriend tried, but maybe not strong enough. I'd need to hear his story.
daigonite came with her story to this community, and I feel we'd do her a real disservice to say, oh, sure, your life is going to be great, and we understand your pain.
We are so open minded, we can understand why you want to be like us dispite all the issues it will add to her life after the fact.
No, it be a real mistake, and I don't feel closed minded for saying so.
I've said before, she'd fix one issue only to add a pile of others she probably never thought about at all.
And Wayne's is the side nobody's talking about. Wayne I think what you're
doing here is important, because you've been both. I've only been blind, no
optic nerves. It does seem there is a real issue here with BIID, but like you say,
it would be dishonest of us to make it sound like going blind would be the
answer. Hell, I am finding myself in a situation where if I was sighted I'd use a
bike. But if you're blind you're not going to bike all over the city lol there's just
no way, not even for the super study do everything kind like som of the young
ones on here claim to be. And I travel on foot everywhere, if not bus / train and
still consider myself most fortunate based upon where I live now. But options
are limited no matter how good you have it when you're blind. That's
information BIID sufferers need to understand. Like Wayne says here, it would
be dishonest of us to say anything else.
Agree with both of you.
Honestly in my opinion I just feel guilty about the whole thing because I know a lot of blind people wish they could
have sight. I hate living with that. I just wish I was born blind so I didn't need to deal with any of this crap. I wish I
could give that to them but I don't really have a choice in that myself. A lot of people are complaining that she didn't
donate her eyes but that's practically impossible. But at the end of the day I didn't choose this and I've decided that
the best I can really do is to just be the best person I can be at the end of the day. I really hope one day a treatment
that doesn't involve going blind can be found but I don't necessarily have high hopes for that, not with people like Dr.
Phil running their mouths like that and acting like our problems don't exist.
It is entirely possible that Jewel's problems could be explained by other things. She has trauma, she has a need for
belonging in her family, she has many other conditions which could cause this. But in my case and quite a few other
people I know, these things simply don't exist. I had a decent childhood, I have decent ties with my family, I'm
otherwise a fairly normal person and I live a fairly normal life other than I feel like I need to be blind. So what if
Jewel may have something else, it hardly matters now anyways because she's already done the deed. What worries
me is as a sufferer who hasn't done anything permanent is that I will never receive the help that everyone keeps
telling me to get until it's too late. It's so frustrating because I really do try to play the game the right way and I
can't help but feel that I'm continually cornered by it.
In my opinion I think it's wrong to classify BIID as a mental disorder though. Perhaps it's just me nitpicking (because
honestly, it's not like the stigma could be any worse) but most mental disorders are things that are caused by
chemical imbalances in the brain or trauma which affects brain functioning, and can be fixed with therapy,
medication or other practices. Neurological conditions however are either congenital differences or caused by brain
damage. Considering that BIID can mimic another syndrome called Alien Limb Syndrome (which is caused by strokes
or other forms of brain damage) it's better to classify BIID as a neurological condition. I mean, while believe what
you want about Jewel, but I've been maintaining a fairly sane and straightforward path of thinking in these
discussions, so the condition I wouldn't say makes someone "mentally unstable". Perhaps that mistake though is due
to a common misconception of what the difference between a mental and a neurological condition is.
I hopefully will be attending a convention in Georgia in the end of March regarding BIID and maybe I can learn a bit
more of what the professionals have to say. Unfortunately I haven't been contacted in a while by the researchers in
Germany so it seems like their study may be taking quite a while to construct. I just wish something could be done
about it, really.
I hope you can get rid of the guilt. Guilt is only useful if you've actually harmed someone. You can't telepathically harm someone with your thoughts, no matter what religions and new SJW ideologies tell you. Actions are either good or bad. Thoughts are just thoughts. You're not wrong for dealing with this issue, or for wishing you were blind on account of some brain condition you've got. Some of us just want to keep it real re: what it's actually like to be blind.
Of for sure, for sure. I hope nobody thinks I'm talking on the behalf of blind people. I
want to understand the experience as a blind person because I want to be blind, not
because I already know. The problem is that my life is too busy and going around and
blinding yourself isn't really the best solution, lol. The times that I did take out of my
life to be blind were interesting, fun and enjoyable. It wasn't the full package though
which both disappoints me but also worries me as well. It's complicated but I think that
makes sense.
JUst curious about one thing -- you say you don't think BIID is a menal disorder; It's not right so what is it?
I don't like saying this.
You are a really young woman. Your life is busy only because you want it to be.
At your age, why can't you go back to your family for support for a time and that way you're life won't be so busy.
Next, research, or go to a clinic and start talking to professionals about your feelings.
You say you won't get the help until it is to late, but in the next breath, you have this normal busy life, so don't have time to deal with it.
You are putting road blocks in front of you when you need to slow down a bit and take care of you.
You've got time to possible find a solution to go blind, so it will be too late, but you don't have time to try to help you?
See where I'm going?
I don't care if you call your condition a mental disorder, or a faze, or whatever fancy name you want to label it, it is a problem like being sick that needs to be cared for.
I don't mean sick in a bad way, but like having a cold you need to stop and rest to get over. You don't have time to help people, you don't have time to do this or that, but you'll find the time to go blind, because you didn't have the time to seek help?
No. Doesn't wash.
You can't even take the time to benefit yourself to train to be blind, so when you go, you'll be totally lost.
Can you not see that?
It is almost as if you have a death wish, to use a term. You want to suffer at the end of the road, because that is what you'll do.
Think of yourself first, and get help, find help, create a training schedule, and help yourself recover or avoid the pain and loss.
Just watched the interview, and this is sad. However, my stance still remains. Whether those of you support her or not. Then, she's a major liar.
And, to say you're supportive of this, you're supporting the psycho who heard voices, and it told him to shoot up a school or something.
RDFreak - I said it would probably be a neurological condition, which means that it is
either a congenital malformation or physical damage to the brain or nervous system,
as opposed to some sort of imbalance of chemicals or a misfiring of neurons. What
the current theory is, is that it is partially caused by a neurological problem that
causes the individual to not properly identify part of their body, usually a limb, but in
my case it targets my vision. I feel specifically like my retinas shouldn't work.
Because of the development with this disorder it has clear psychological effects as
well.
Foreel, I'm sorry, but I can't just do that. First off, I have some issues within my
family which makes moving back in not really an ideal situation. My parents are on
the verge of divorce, and my father is particularly unpleasant to be around. My
mother cannot support me on my own and I don't think that it's her responsibility to
do so as an independent young adult.
I have already spent a year bouncing between professionals. This has cost me a lot
of time and money that I simply don't have at this point just to listen to them say "I
don't know". They know that I'm not crazy, they know that I don't suffer from
severe psychological disturbance, but they don't know how to help me. And quite
frankly, I'm exhausted from having to go from doctor to doctor to have them tell me
the same thing. I may as well be lighting my paycheck on fire.
Going back to my family again, my parents have no interest in paying my bills, and
again, as an independent adult, they shouldn't have the responsibility to do so. They
won't be around forever anyways so I can't rely on them.
I already spend a lot of my time researching BIID and all research has concluded is
that there is no treatment at this time. Despite this, I still have tried for a year to
receive treatment to no avail. I have found that my own treatments, involving
walking around the office with my eyes closed, have done far more to help me
manage the condition than asking doctors who don't know anything.
What you need to understand is that my condition has only progressed to a state
where I am aware of it - not to the point where I am going to blind myself. I know
that from you reading this that it's difficult for you to determine yourself but I have
the issue under enough control where at this point, continued management while
people who are actually specifically studying the condition can actually help me.
Currently I am focusing on resolving another problem that can be solved, that I can
go to professionals for and know that I can get help, so that my stress can be further
relieved and help reduce the symptoms of my BIID further. However, your
suggestions are fruitless and ignore the obstacles in the full situation. It seems
almost as if you aren't listening to me and are insisting that I'm just trying to take
the easy way out, but please explain to me this - why should I continue to burn my
money (or anyone else's for that matter) just to be told that they don't know? Why
should I be expected to dig myself further into the ground with medication that
doesn't work (and that forms addictions, such as antidepressants), therapy that
wastes my time and medical bills that keep piling up? I'm already having trouble
paying down what I already have and thanks to this excursion I have an addition to
antidepressants and I'm terrified for the day that I may not be insured and be unable
to pay for them.
BIID isn't something like depression or anxiety where you can just go to a doctor,
get diagnosed and get medication for. There IS no known treatment. And everything
I have tried does not work. I am not going to sacrifice my career, my lifestyle nor
my future for going to the hospital or getting medicated for something that I am able
to manage on my own. I tried to get treatment out of obligation and it only made the
situation worse. Your ignorance to the failures of the mental health industry do not
change any of that.
Regarding your cold analogy, you keep telling me to get treatment, but you're telling
me to get treatment that doesn't work. This would be more analogous to giving
antibiotics to a person with a cold. It has no effect and it actually makes the
situation worse in the future. That is all that has happened to me. I've lost all faith in
the current medical system to actually treat my condition and I am not currently in
the financial state to further engage in this fruitless endeavour.
I have tried therapy, I have tried sensory integration therapies, I have tried getting
myself on medication, I'm even trying to resolve my other identity issues as an
attempt to resolve this problem, but it will not resolve. This is something I have to
live the rest of my life with.
And finally, I have a question to ask you - put yourself in my shoes for a minute.
What would you do if you had a problem that everyone told you to get help for, but
that said help was completely useless? Because this is what everyone is doing. There
is no solution. You need to understand that.
@Agate - I can't speak for Jewel but I am mentally sound. In fact most people who
have evaluated me seemed confused to why I was seeking their help in the first
place until I was comfortable enough to tell them that information.
I’m not suggesting you waste money. I’m suggesting you get some canceling free.
Yes, waste somebody’s money. I do understand how it is to go from doctor to doctor and be told they don’t know, but you’ve got other options.
I am hearing you, but every suggestion that has been made, and not only by me, you reject completely, but have never tried any of it.
I’m not talking about the therapy, but the living as a blind person.
You said you had a stable childhood and family, so I assumed they’d help. Now you say, oh, no, they are not stable, and give me every reason they shouldn’t and can’t help you.
If you were older, I’d believe you’d been to all this therapy and such, but you’re not but 20?
According to you, you’ve not had time to do this or that, so where have you had all this time to really get therapy, and see a bunch of doctors?
I am hearing you perfectly, but I’m hearing no matter what is suggested, it can and will not work, because your condition is not treatable, and you’re waiting on this study to help you, but that study is probably stalled.
If you can’t get help, and you’ve got it under control, why not do yourself a favor and learn to deal with it so you understand what it will be like?
What I think, and I could be flat wrong, is you need a push from someone close, or a good friend.
I can see 50 ways a person like you can live and not have to work so hard to do it, but I’ll bet you 100$ you’d not do any of it, or find some way to tell me you can’t.
I don’t care why, what the condition is called, how it got started, and all that. What I think is you probably haven’t been successful at any therapy, because, you reject suggestions.
If you’ve been on lots of drugs, that makes me really sad. The people you’ve seen have really done you a disservice from the limited amount of facts I have anyway.
I know I sound as if I’ve got the solution. I don’t.
What I wonder is why any and all suggestions are met with flat refusal, or reasons they can’t work?
People reading this probably think me crazy for not understanding, and think I know it all, but I’m fighting for you.
No, I don’t know you, but it be a tragic think to end up like Jewel.
The blind isn’t tragic, the situation is.
I will have to accept you are going to be as you are, even if I took you by the hand. Smile.
So, saying that, I’ll have to bid you to be well.
Also, I'll say this. I'e taken your post at face value, meaning, I have believed all you've written.
But, I'm confused. That isn't a topic for this board.
I'll just say, if you are a young person and all as you claim, that is the person I'm trying to sway, not someone creating a life.
Okay, first time I'm posting here. I hate Dr. Phill and Daigonite? agree. But, in
the other hand, I understand Jewel a little. but why blind yourself? I don't
understand. And the doctors and psycologists were okay with this shit?
wow... That's all I'm saying. I admire how you wanted to help the society
jewel, but blinding yourself is the worstest choice you ever made. But in the
other hand, you will learn how we are in the blind world. So... good luck with
your life.
re the previous post, it's pretty obvious to me that the psychologist who complied with Jewel's wishes was not a true doctor. His licenses had been revoked, years before this incident, so he wasn't qualified to treat patients. She probably went to a number of doctors, and kept digging until she found this shady character who would go along with what she wanted him to do. any sensible, intelligent person would realize the psychologist was a fraud, and I'm sure she was aware, but Jewel had her own agenda. That's why she apparently did no checking into his status, or obtained references for this so-called doctor.
This story was a novelty that's growing tiresome.
And I thought the Dr Phil show could have been so much better, with input from a variety of doctors, and other blind people with differing opinions.
I honestly still find it surprising that she even consulted a psychologist for that
purpose.
I agree, that guy is completely unprofessional and deserves to have his license
revoked. That is not the kind of person that should be kept around - he only
observed her for 2 weeks before making that kind of life altering decision.
I think more attention should be turned towards trying to help people such as myself
over the controversy with Jewel though if only because her damage is already done
and is irreversible. Regardless of whether or not she's happy with her decision this is
indisputable. Sadly I don't think this sort of attention has done other blind biiders
any real good. I'm honestly pretty disappointed in Dr. First's evaluation of her
because while it's entirely possible her problem is something else, he may
discourage research in blind BIID and thus cause issues for people such as myself
and some others I know who, as stated previously, can't possibly be diagnosed with
something like PTSD or some mood disorder to explain these symptoms. It's very
frustrating but I do know a pilot study is in the process of being conducted by a
German scientist that I'm participating in so not all hope is lost in that respect.
true, that phsychologist needs his lisence revoked. And, yeah, they need to
understand the people who have that disorder.
It just goes back to bad decisions made under duress. We've probably all made at least a few. Jewel's had big consequences. But now that it's done, I think the emphasis should be on doing what we can to ensure that others don't find themselves feeling similarlyy, not on reviling Jewel for supposedly giving us a bad name or having some sort of "agenda", as if that's an awful thing to have.
Where do you all get that Dr. Phil hindered progress regarding BIID? He had on a prominent psychiatrist who is head of (or something close to that( the panel that creates the DSM, the diagnostic and Statistical manual for psychology and the gentleman said nothing that contradicted the fact that BIID exists, just that it is rare and that Jewel only fits a few of the main indicators. For those who don't know, to get a diagnosis via the DSM (and probably other medical issues) you typically have to have a certain number of the indicators for the disorder. He is researching BIID and with his prominence, that lends it credibility for the moment, whatever the outcome of the research is.
I was disappointed Dr. Phil didn't focus more on BIID, but the show was about Jewel, not BIID and I believe his main purpose was in discouraging others from making the same choices she did without the proper investment of time and research and by all means, appropriate help. No offense to Jewel as I don't know her but there are certainly differing accounts of the truth coming from her and this lack of reliability hurts BIID not Dr. Phil.
That doctor had had his license revoked 11 years before she even went to see him. In the interview, all she said when questioned why this was done, is, "I trusted him." There had to be something else going on there ...
Definitely, I would like to see there be some type of treatment for the condition, and I'm glad they're finally trying to work on something for it.
I'm glad to see that a few others feel as I do regarding this "disorder." Jewel did make her bed, she does have to lye in it, and it isn't harsh to say so.
I am glad Dr. Phil told her as much; she and anyone else who claims to have this problem would hugely benefit from hearing such a statement. Because, the reality is that when you agree to be on a show like Dr. Phil, you agree to hear whatever he says. You don't have to like it, you don't have to agree with it, but you agree to hear it because it's his show and he has every right to give whatever advice or words of wisdom he wants.
I still remain baffled at how many people are so willingly accepting of this.
Lastly, Daigonite, I really do hope you get the help you need, and that you learn the importance of opening yourself up to receiving some kind of therapy. There is help out there for you, and many suggestions have been presented to you within this very topic besides therapy. I know you're young, which probably has a lot to do with why we're seeing you make all these excuses, but I hope you find help someday. I truly do.
I can identify with Jewel, and Dagonite. I don't have BIID, but have a condition that took twenty-two years to even diagnose. The medical profession, is "NOT," perfect. Just trying to find the right doctor isn't the answer. Look what happened, when Jewel tried?
Nobody knows what to do about the condition. No treatment, and that means definitely. This sounds just like so many problems in this life. So many illnesses can't even be treated, but everyone says: "Go to a doctor!"
Dagonite is right to say that wasting money when there's no treatment, is wrong. The best she can do, she is.
My prayers are with you, while you participate in this study. As much as I hate being a science experiment, I know that it's important to keep trying to make things better, for those with my condition. Especially, as what I have is even more rare than what Dagonite has, since I'm the only female alive, that I know of, that has it.
Taking a pill just to look like you're doing something to make yourself better, is wrong. Now, if you can actually treat something, like Epilepsy, or depression, then I'm all for it. Too many doctors want to just throw pills around, saying that old line that sends the patients away, thinking things will be perfectly all right:
"Take 2 of these, and call me in the morning."
Blessings,
Dr. Phil is not hindering the research on BIID. Quite frankly I don't care what he
thinks because he's the psychology equivalent of Jerry Springer. What I'm concerned
about is Dr. First not taking blind BIID seriously, because he's a major researcher in
the subject in the United States. What I'm saying is that factors that he determined
would rule out a BIID diagnosis doesn't exist for other blind BIIDers such as myself
and some of my other blind BIID friends. Most of us have had pretty average
childhoods with mild deviations at worst. However since Jewel had a lot more issues
and she's the first person to come out about blind BIID she may have inadvertently
caused damage to that potential research.
Chelsea, aren't you not much older than me?
And I don't want to be rude but therapy won't do anything. I've spent a year going
back and forth burning my money. The stress of going to the therapist was not worth
it and it actually made my situation worse. I actually improved when I decided to
hold back and focus on issues I could do something about.
I mean at the end of the day, accept it or not, it's still a disorder. The reason why I
would like it classified as a disorder is not so I can get free handouts or sympathy
but rather because I can get help specifically catered to my problem. It's why we all
seek a diagnosis for something, really. Going to a therapist that has no idea how to
help you is completely useless and it just frustrates the patient further.
I agree, Hot Wheels, I find that people who don't have to suffer from rare conditions
do not realize how difficult it is to get diagnosed. BIID is not officially in the DSM-V
which makes things much more difficult, and people are not sure about the full
classification of the disorder yet. We really cannot get help with these sorts of issues
unless we get some help that is designed around our general problem. So I stick
with researchers because they're the closest thing to possibly getting a bit of help for
this condition.
I agree. However, researchers are annoying. I'm so sick of the nay-sayers who think I'm full of horse turds, because I'm "Female. And Girls, don't get what you have..."
Have you ever considered BIID, might have a genetic relation? Just curious.
Dagonite, don't worry about the folks that don't believe you or Jewel. I can understand, because, I have several issues, that clash worse than oil and water. Actually, my friend saw the thing on Doctor Pill. Yes, I did say that on purpose. I think he's a jerk, and makes Jerry Springer look tame. All those shows are about drama, and I am sick of seeing them. But, they must get paid big bucks, to keep spewing their bs. He does remind me of the folks that said that rape victims asked for it. Frankly, that hits too close to home, but have you noticed how few rights victims have these days? Not that I want the lacey hankies, and how sorry someone feels for me. Save that for those who don't want recovery. Like you and others, I want to see treatments.
The doctors that "Practice," medicine need to find a way to identify the condition you and Jewel have. Once I was confirmed, they stopped accusing me of being full of hot air, and started trying to make things better for me. It's the difference between the sugar pills, and the real cure.
I feel pity for those following Doctor Pill's crap. And, might I point out, I understand why Jewel went to the person she did. A lot of well-respected doctors and counselors get their license pulled, for simply talking about Jesus, or whatever and whoever they believe in. Those same people are now finding out that faith is a major part of counseling. For all she knew, the guy was pulled off the licensed group, for preaching to a client. Just a random thought. I've talked to, and received some good counseling, that Uncle Sam would not approve of. Too bad. That counseling taught the difference between forgiving and forgetting. And, they didn't have to pay for it. "Going through the government approved program," doesn't solve all problems. So, I understand how someone could trust someone like that awful dirtbag. It's the same things that probably made Doctor Phil seem like a good idea.
Blessings!
They think there are three genes possibly linked to motor BIID but blind BIID is so
rare they don't know if its the same thing. I do plan on participating in that genetics
study but I have been putting it to the side for now because communication with the
research is a bit difficult and he hasn't really explained to me what I need to do fully
yet. Says I need a blood draw and I need my physician's permission but I don't
know what protocols to send that information to him. I have other issues right now
that are taking precedence since I currently have my BIID under control so I'm
focusing my finances and efforts in that direction currently.
I went to the ER out of desperation and claimed I was going to kill myself in an
attempt to get something done because the therapy wasn't doing anything and my
condition was getting much worse. In the process the psychologist tried to diagnose
me with all sorts of bullshit (she said I was extremely delusional and bipolar after I
made a joke about "you could even understand the code I'm working on at work"
and me saying I knew more about the blind than most people, which is pretty
ridiculous). But after getting off the phone with a psychiatrist, she said I could
possibly have BIID and I was also diagnosed with major depression. I'm currently on
medication for the latter.
I personally don't agree with what the psychologist did, but mainly because 2 weeks
is not enough time to be able to make that decision. I do believe that, in extreme
cases, people with BIID should have the right to safely undergo surgery for their
desired body, but this is mainly because BIID can get so bad that people lay
themselves in front of train tracks to relieve themselves of the offending limb.
However that decision simply cannot be made after 2 weeks. Hell I don't even think
that decision can be made after 2 years. It's just not professional in the slightest.
My biggest gripe with research is that it's very very slow. I signed up for a research
study that basically started in August and I haven't heard much since. He is a
professor at a university after all. Currently they are working on designing the study,
which is mainly a questionnaire. No news on when I'll actually be able to fill out
those questions, lol. There aren't more than a few dozen researchers studying BIID
so it's pretty frustrating indeed.
Shrinks gotta shrink.
And medical people aren't like the rest of us engineers. As a software engineer,
if we don't know what the answer is, we state that we don't know yet. That's
the intellectually honest response, the response in keeping with sound
character.
Medical people, when they don't know what the answer is, claim it's all in the
sufferer's head. That is in keeping with a lack of scientific discipline and shoddy
character.
Any of us old enough to have known agent orange sufferers know that was a
real thing. I knew some guys from Nam who had that, and I was a kid then. A
fucking kid! and I could see that shit was real. But the medical people at that
time lacked the intellectual honesty and moral fortitude to simply say they didn't
know. Instead, they resorted to the childish and faith-based notion that it must
be in the sufferer's head.
The same thing is now true of chronic pain sufferers. Only now they're starting
to find out that there's some neurological component to that whole mess.
There's something about some of s where anesthetics and shit don't work on us
properly, so that we feel shit when they're doing stuff.
These are not scientists, in my opinion. You think that some group of people
who claim "It's all in their head" could ever have made you an iPhone? Could
ever have put Buzz Aldridge and Neal Armstrong on the moon? You think
anyone so incredibly defective in character could describe to you how a boot
loader worked, if such a person even made it as an engineer?
It's not science, people. Because science admits when it doesn't know. It
doesn't blame the subject or object, that's patently ridiculous.
When you people report a bug in some software, the very worst response you
will get is that the engineers cannot reproduce the issue, or don't have a
solution yet. And we know that's very frustrating. We get that. But you will
never ever hear an engineer claim it's all in your head, not unless that engineer
is out of his / her fucking mind and really wants to be unemployed.
I'm neither an Agent Orange sufferer, nor am I a chronic pain sufferer. In fact,
in both of those two cases, I've experienced the stark reality of being able to
breathe good air and carry a full pack / go as far and as often as I want to,
while the aforementioned sufferers obviously could not. and in both cases, I
have seen them in action, when they didn't know anyone was around. Neither
situation is an attention getting scheme, else they would have been walking /
functioning normally when they thought nobody was there, but this damn blind
bat happened to be around the corner within earshot but out of view.
Again, no self-respecting engineer who wants to stay employed would ever
claim a bug was all in your head. Nobody at Houston during the space program
ever told the folks in space their problem was all in their mind. Know why? Real
scientific people don't do that, fakers do. Nobody likes a faker.
As this pertain to BIID, I don't understand it, never took a shrink course, my
daughter's social justice / psychology homework she's got is miles beyond me
lol I tell her come to me with anything science related I can help wth that. But,
the intellectually honest answer is we don't know yet. Real scientists, real
engineers, will figure out what the fucking bug is. Sorry, I'm just a bit sauced
right now been hanging with my friends at the bar for the past few hours, so
guess the proverbial filter is somewhat misplaced at the moment. Agree or
disagree with what I'm saying, just ask yourself: Would you have an iPhone if
Apple treated engineering difficulties with this faker nonsense about things
being all in someone's head? Would we have been the first nation to land on the
moon with such an insipidly nonscientific faker mentality?
I'm glad of one thing and one thing only: These people aren't in my industry,
they also don't build your roads, your power plants, your bridges, or any other
infrastructure that you use else none of it would actually work. Not with that
kind of an attitude. I'd send a intern out the damn door if they had such an
attitude towards a customer's issue. Again, we all understand not knowing. Shit,
that's a huge part of any scientific endeavor. Not knowing, and having the
character of a six-year-old to admit that you don't know, and the fortitude of a
teenager who lost its phone, to go try and figure out what the answer is. That's
real applied sciences; and the rest is, to quote a zoner on here from a year ago,
"fake as fuck".
Honestly, any medical person who says something's all in a sufferer's head is making a mistake. Thankfully, more and more these days don't do that like they used to.
Of course, the issue is made a little more complicated by stuff like Munchausen syndrome and hypochondria, where symptoms essentially -are in a person's head. But saying so, in those terms, isn't helpful. The trick there is to tell a person very clearly that no, they may not have the physical symptoms they think they do, but they do have a mental issue that needs addressing.
All this being said, BIID is a mental issue that needs addressing. Daigonite, I understand what you're saying about the difference between a mental disorder and a neurological disorder; I am only meaning to simplify because externally speaking they look very similar to one another in a case like this.
I think pretty much all of us are in agreement that Jewel's psychologist was not acting wisely, and that Jewel, by trusting him so quickly and with so little to go on, was either very desperate, very shortsighted (pardon the pun) or both. I tend to think both. But that does make me think it must have been very bad for her, and further leads me to wish that there was more known about this condition.
I dunno. I feel like this topic is starting to paddle in circles.
ha topics always go in circles on the zone. Lol :)
Especially when some of us are a little drunk, as I was for my last post.
Yes. Topics go in circles, so we all can get dizzy. LOL
On a serious note, I got the "It's in your head," stuff too. Yeah, it is, all right. Just a different part.
My problem is I have some symptoms of Fibro-Mialgia, but also some of Chronic Fatigue, and they don't know what to call it. I guess, that''s why it's called "Practicing Medicine?" Grin!
I kind of envy those with others of the same gender who they relate to. The last female I heard of, is dead. So, I'm the only girl with my condition. I feel like the "Odd Man out." LOL Pun intended.
Blessings!
Hi MS. Shuping,
First of all, I won't become abusive to you or anything of that sort, because let's face it, that won't accomplish anything. I just want you to understand some things. I am sure the backlash you are getting is hard to deal with, However I want to explain why I think this is happening to you. Keep in mind I am not bashing you in any way, nor am I saying that I understand what you are going through, but here's my take on things. You had site. You could see everything from the sunset to pictures of your loved ones. So you had the site, but then you just tossed it away like it's nothing. Some of us don't get this choice Ma'am, Some of us have days where we wish we could see. At least I do anyway. Now keep in mind, I am not saying this to speak for everyone, I am only stating how I feel about this. I am only trying to explain to you why you could be getting the backlash you are getting. I am also not saying this to make you feel bad about what happened. I am not going to lie to you, when I heard this I was really angry. To be honest with you I still am. However yelling and abusing you will not change anything, now will it? Nope, not at all! So that is my thoughts on this whole thing. I really hope I did not make you feel bad in any way.
All the best,
Cat
this board needs to die. it needs to die now! Cat, it was brave to post what
you said here. I just still feel hatred, anger, and other feelings I didn't know I
was capable to feel. thanks for the brave post. :)
Hi.
What I have to say is mainly to Daigonite and others who have this condition.
I don’t go along with the people either on this site or in real life who say that the woman in question just blinded herself for money from the government. That idea of “minorities just want free hand-outs from the government” is getting so fucking old and so tired that it would need one of those C.D. alarm clocks programmed to play a Death Metal song from the C.D. player on it at full volume for whatever time the alarm is set, that’s how old that idea, or “Meme” if you prefer is getting as to why she did it or why others in minority communities are less fortunate and living isolated lives. Not to mention that that idea is intellectually lazy to the point that it’s really not worth commenting on for the most part.
That being said, what I do think is that I would really hope that you and others who have this disorder stop and seriously consider to a full extent, assuming you haven’t already, the full and serious implications of what you’d be asking for once blind. You’d have to start working with state agencies most of whom are profit-before-people oriented, spend time putting us in phone or computer jobs for offices, such as answering phones for an office or updating records for a boss in an office all day, as well as you’d have to deal with getting less than sustainable payments each month of S.S.I. which barely gets people by, myself especially.
While I’m attempting to be understanding as to what you and fellow sufferers go through, I seriously suggest fighting against it as much as possible, because unlike people who are transgendered, you guys can’t just hide the absents of eyes like they can with the parts they have removed without it having implications most of which are negative for you and fellow sufferers. I do hope that you can find some relief for what this is, and I’m still not clear as to what this condition is actually called, assuming anyone has named it.
James
body integrity identity disorder
reverse the two I's I think, but other than that, I'm pretty damn sure I got it right.