Category: Let's talk
I was reading an article this morning, and it stated, "we think that this story may be a bit far fetched." It then linked to this article.
http://wncn.com/2015/04/17/blind-raleigh-woman-raises-funds-to-help-blind-indonesians/
Enough said.
Don't know, but teaching people to use canes sounds pretty good.
Canes can be sent from US stores free shipping in these cases. I don't know how many people know this.
Trainings another thing however.
People really need to be careful with things like drain cleaners. These products contain lye.
I saw this same link on Snopes the very day I replied to the other board. But the writer of that Snopes article seemed uncertain, or at least the results of her investigation seemed to be inconclusive.
In accordance with my skeptical nature, I guess I still have to be fully convinced either way. Unless I see more evidence.
Yes, it is a good idea to check before donating. The things people will lie and claim they are doing. Smile.
I saw the Snopes article, too. That raised a lot more questions than it answered.
This, coupled with the fact that I know Jewel a bit, also raised a lot of other issues, which I won't get into on a public board.
I don't know her well, mind you. She's someone I spoke to a couple of times. But people in my circle of friends do know her well. And what I've heard doesn't instill a lot of confidence.
Just keep your eyes open, guys. Ha ha, bad pun there.
Hi guys, I know Jewel personally, and here's a few things I can say about her. I also
share her condition. I try to be as transparent with the public as possible, and I will
be contacting snopes now regarding this possible misinformation.
I believe that everything she has told the public and everything that she has
presented to be true. Regarding the Indonesian thing, she did have a link to the
actual funding page but it hasn't raised much money. She is on disability but not for
her blindness but rather unrelated chronic pain conditions.
The article states that she mistakenly poured drain cleaner in her eyes. This is false
and a lie she has told to the public to conceal her condition. Since it took several
hours of digging for me to discover Jewel in the first place I won't be providing the
source, but there is a blog she ran that used to be on the now defunct Transabled.org
where she talks about herself several years post transition where it is made very
clear that she intentionally poured drain cleaner in her eyes.
Because of the extreme stigma related to body integrity identity disorder, most
people are pretty quiet about it. Some only confide to their partners about the
condition and that's it. I will be the first to say I've been more open about it but this
is because I'm more open about things in general and I trust the blind community
after being fairly acquainted with quite a few of you guys, but she didn't really have
that. Most people that I know who have this condition have only told one or two
people, if any at all.
She has participated in multiple research studies regarding BIID as well, further
solidifying her own belief that she does have this condition.
It may be possible that her Indonesian thing is a scam but I honestly don't believe
that is in her character. I do know that the man presented in the video about her
coming out about blinding herself was embezzling money and she has since left him.
If it is - so be it - but her condition is real and she did intentionally blind herself. She
is not suddenly capitalizing off of an accident.
If you don't believe in the existence of her condition, or the fact that she has a
condition, that's fair enough, but I also have her condition and I would at least hope
that my transparency is enough to justify that at least some people have this
problem. If you have any questions about it, feel free to ask.
Upon reading the snopes article, I'm going to address a few points:
- Jewel does sometimes go by Amber, her birthname, but often refuses to use it. She may have used it to try to preserve
some anonymity because of her posts regarding BIID. People with BIID don't want people to know about their desire to be
disabled because of the intense stigma with it, so it makes sense that she may go by a different name.
- Her response in the newspaper to going blind doesn't sound like the response to someone who just became permanently
blind. As a BIID patient myself, something that frequently crosses my mind is "how should I handle being hospitalized for the
accident?". People with BIID don't really know how to react to the idea of becoming disabled in the "desired" way. I honestly
have no idea how I would feel if I actually became blind in an accident, which may be a symptom or cause of the condition.
This results in a person with BIID playing in their head the scenario over and over - not just because of the desire to be blind,
but also trying to figure out what the best response would be to hide the condition. In Jewel's case, her pain was probably far
more noteworthy than her blindness and this may have been enough to ward off potential institutionalization.
- She doesn't open her eyes in the footage but it appears that her eyelids are drooping or otherwise not moving. A healthy
person's eyelids don't appear like that while they're closed, and often make subtle twitches or other movements that hers
don't make. Her eyelids look more paralyzed than just simply shut.
Jewel has told me that Barcroft Media has told her not to contact Snopes. I've spoken personally with Barcroft Media and may
participate in a documentary myself on the same issue, and it does seem up to par with their standards. They're a news
media agency, they want to control what is presented forward for their stories.
I would like people to be public about any possible misconceptions about the disorder or Jewel since I am a close friend of
hers. I mean if someone knows information that I don't I would be appreciative but it sounds like most of this is word of
mouth. Greenturtle, if you don't feel alright with publicly telling me some of this information, feel free to privately message
me, since I'm always on the lookout for knowing more about these things.
I run a blog about the disorder and there is quite a bit of study on the motor (amputation/paralysis) forms of BIID. Blind BIID
seems to be either very rare or people don't come out about it so little study has been done, but some pilot studies are being
initiated on this specific group. I've collected a fair assortment of studies that can be read here:
http://a-totally-blind-biid-blog.tumblr.com/docs
Apologies for three posts, I do want to drill down this issue though. Zonebbs really
needs an edit option.
Anyways, I did notice one discrepancy in the article - Barcroft claims the incident
happened in 2006 while the evidence shows that it happened in 2008. I asked her about
this and it seems like it was genuinely just a mistake, and is being corrected in further
media presented by Barcroft.
Thank you for your posts. I'd honestly never heard of the disorder before so the information you give to us is really helpful.
Hmm I'm looking at your Tumblr now, even though I rarely if ever go on that site. First I saw was triggers like I've heard about, apparently everything on Tumblr has what the kids calls trigger warnings.
That shit's kinda weird, but I do respect your analytical approach on this site. And I do understand not being believed, that is often worse than the pain or whatever you're contending with is.
Oh boy, triggers... 99% of the time on tumblr it just means stupid crap that you get
upset over. I did put it on there to be on the safe side because I am talking about
wishes for self harm and reading the details of stabby mc stabby eye disorder might
make a few otherkin feel a bit uncomfortable.
If you know her personally, why do you say you believe her statements to be true instead of you know it?
Just interested, not asking to argue?
I haven't known her for a long time and I think that you can't just trust someone's
word all the time. The story of meeting her is a bit of a long one, but basically I met
two people who also claimed they had BIID. One of them probably didn't and was
really a huge pain in the ass, but this person somehow managed to get a hold of
Jewel. I'd heard of her through hard-to-find blog posts on wayback time machine or
whatever and considering she was the only blind BIIDer I knew who actually did it I
had to ask her questions about it. Long story short, asshole kid eventually got booted
for being extremely obnoxious and nasty and the three of us have been talking quite
a bit in the last few months.
I do believe her story but if people have evidence to suggest that she's concealed a
part of her character from me I think I should know about it. I mean I kind of feel
shitty for saying this but it would just break me into pieces if it turned out that she
wasn't genuine about everything.
I definitely believe she is blind based on her physical appearance and me just talking
to her every week but I'm more concerned about the Indonesian charity or
whatever. If she has a known reputation in the blind community that is negative I'd
like to know about it.
So you don't know her personally.
You've never met her and spent time with her.
My friend Johnnie's blind. I know this for a fact, because I've spent time with him, and know he's got false eyes.
I can say I know him personally.
I get what you're saying Wayne, but realistically how many of us on here have actually met each other? For all I know you are really sighted. Get what I mean? It is a valid concern on the internet though, but I guess you have to go with your instincts a bit.
True, but I can't vouch for anyone I've never met.
I was interested if it was true that the girl was known personally.
I can say that about 2 or 3 people on this site. I know them personally.
I've touched them, spent time with them.
Otherwise, you are correct, I could be perfectly sighted, you don't know. Smile.
I just wished to know if knowing her personally was true, or a concept.
I don't want to be rude but as a sighted individual you can tell if someone is
physically blind by looking at their eyes. Her eyes are shut but they're shut as if she
can't move them, not as if they're being shut intentionally. They look different and
oftentimes those being shut intentionally twitch slightly. This isn't really comparable
to something like saying you know how someone lives exactly in their everyday life,
and I didn't really claim to act like I knew either.
I mean perhaps this is because you're older (I don't know your age so feel free to
correct me) but I grew up in an era where making friendships over the internet was
a completely normal occurrence and you would often get involved in deep, involved
friendships with these people. While I wouldn't say that online friends are as reliable
as real life friends due to the distances involved, I would say that I am as close to
many of my online friends that I've spoken to for years as my real life friends whom
I've spoken to for the same amount of time. So it might be the result of us being
from different eras.
I apologize if I was confusing you but I do talk to her regularly. Nonetheless I don't
think meeting her in person really changes any of what I said since I know her quite
closely. This isn't to mention that the inquiries I have about her are addressing
people who also don't know her personally, so I think you might be scrutinizing the
situation too much.
I do not mean to go off topic here, but you cannot always tell that a person is blind simply by looking at them. Since my eyes appear normal, and I am still able to make good eye contact with other people, a number of people have a difficult time believing that I am blind. In fact, not too long ago someone on the bus asked me if I really was blind because according to this person I did not look like a blind person. So the assumption that all blind people have weird looking eyes is simply not true.
also, blind people do move their eyes around both open and shut. I haven't read any of the articles on this person, but unless she has had her eyes enucleated-and even then, there are prosthetic eyes that can move-these are no guarantees to the state of someone's vision.
Oops. I didn't intend to imply that. I actually know that
already, first blind guy I knew was like that. I didn't know
that a lot of them have weird looking eyes until later. I
was actually saying the opposite.
What I was saying was that her eyes DO look like they
are blind. Her eyelids almost sag as if they're paralyzed.
Even if her eyes were normal, if she can't open her
eyelids by herself she would still be blind.
I have some online friends I talk to on a regular bases.
I do understand how a person can feel about knowing them.
However, I can't vouch for them and say I know them personally.
I know what I think they are like, and I hope what they say to me to be true, but I've learned, this isn't always the case.
I have talked to someone and they've told me things. I spent some time with them, and learned some of the things they'd told me simply weren't so.
Being a person that once could see, I understand what you mean by visually telling if a person's blind, but I too don't appear to be blind.
If I don't have a cane people are hard pressed to swear I'm blind.
I also make references to colors and such in my conversations.
If a person uses drain cleaner to blind themselves, you'll know they are blind, or parshally blind due to how their eyes look now. The stuff would burn them badly.
How blind a person can get from the use of such a product, I've got no idea.
But, I only wanted to know how personally you knew her, not debate your feelings about her. Smile.
Thanks for that answer.
I know about being accused of faking it. I can't always use a white cane, in my chair, so people think I can see sometimes.. I don't let it get to me. I just say: "I can prove it. Here, can you hold my eyes, please?" Of course, not always that gutsy, but sometimes, it's hilarious to screw with someone who thinks I'm faking it. LOL
Blessings,
Sarah