Category: Let's talk
In my senior year of high school, in 2002, I spoke in front of a class of fourth graders. One asked me a question that I will never forget. "What is it like to be blind?" The question was innocent, asked with a mixture of sincerity and curiosity. I responded, "what is it like to be sighted", and then tried to explain. My answer was not sarcastic, angry, or hurt. In fact, my entire purpose for being there on that day was to answer questions like that and to talk about my blindness.
It was about nine years later that I met a man, named Lee, who asked a similar question. He had diabetes, and was just informed by his doctor that he might develop diabetic retinopathy one day. I have been blind since I was two-months-old, due to retinopathy of prematurity, so couldn't imagine what he was experiencing. But I did my best to help him by offering a list of links relating to blindness, independence, coping, technology, etc. As we talked, our friendship grew stronger, until we eventually started to think of each other as brother and sister. In fact, Bro and Sis is what we call each other on a daily basis. This special bond enabled us to transcend time and space, as I live in New Jersey and he lives in Louisiana, and to embark upon one of the most extraordinary journeys of our lives. After attending a weekend course on blind independence, he decided to learn everything he could about blindness. But rather than simply read books or interview people, he chose to experience it firsthand. He began with a regular blindfold and then graduated to patches, which blocked all light from his view. We call these blind experiments. He has done all the basic things, like learning how to use a cane indoors (as well as taking a few short outdoor trips with a blind mobility instructor), pouring cold and hot liquids, making coffee and sandwiches, showering, shaving, dressing, and using a computer. I am constantly surprised at the things that I learn as I help guide him through his journey. I never realised how much I take for granted. Even something as simple as picking up a cup and knowing what it is, purely by touch, amazed him when he did it for the first time. For his part, Lee has learned to appreciate things more, from the simple taste of food, to adapting when doing daily tasks. He even likes to sleep with his patches on, because he says it's easier, knowing that no light will wake him.
Even though he still has his sight, he takes all of this seriously, and we have decided to write a book on the subject. I will share my perspective, as someone who has been blind all of her life, and he will share his experiences, as someone who can transition between the worlds. We are always looking for feedback and for more ideas for him to try. Can anyone offer any suggestions? Thanks.
I forgot to mention. He also bought a Perkins and a slate and stylus, and is now learning braille.
This isn't an experiment. He isn't experimenting with being blind. He's playing
with preventing himself from seeing for a moment in time. That isn't being
blind. He can still take the patches off. If he's walking on a sidewalk and a semi
truck passes him, he can panic and take the patches off to see again. He always
has that fallback. So he will never understand what it actually means to be blind
until he is blind. Until he has no choice but to do the things he does by touch.
Until he has no choice left. Until his only recourse is to use his other senses.
Until he can't reverse it, its just play acting. Nothing more than that.
what about traveling long distance? perhaps experiencing a guide dog?since he has sight. perhaps he can go to the lighthouse and volunteer. he can make observations. keep a journal docuementing his observations, challenges he identifies in being blind?
That's a great idea! He loves dogs as well, so that helps. I have to ask him how far the lighthouse is from him.
As for traveling, he goes to various motels when on the road for work, and each time, he always enters the room for the first time with patches. Most times, he'll spend a good part, or even all of the night, patchd. We call these blind dates. He'll make a tour of the place, explaining everything to me. Then, in the morning, when he unpatches, he checks his previous observations against his visual ones. It really is interesting, and he's gained an appreciation for accessible and inaccessible rooms.
I'd say he was wise.
Sure, he can simply take the patches off, but he is learning to deal, and will be better able if he should become totally blind.
He has a few reasons for doing this. He wants to understand my world better, and his girlfriend, whom he met during that weekend program, is also totally blind, though she lost her sight later in life. I have never met anyone who did anything like this, so it's new to both of us.
Well, whatever his reasons, he'll never know as posted what it is exactly like, because the mental click won't kick in until he's blind.
But, it will give him a good idea of what it feels like.
Both of us realise that he will never fully know unless he does become blind, which we hope won't happen. But I still think it's great that he's going this far to learn about it.
I think that's pretty cool. Most people don't take the time to learn what it's like to be blind. So, good for him!
I'm going to be one of those skeptics on here.
Last year I had my hand all tied up because of a staff infection. I was not allowed to use it. But I don't know what it's like for someone with a missing hand. Because, much to the chagrin of the medical types and my wife, I could, and I did, cheat. Also, I knew this was short lived. It turned out to be a bit longer lived than I had originally thought, but it was certainly short lived.
Also, there is no unilateral experience for being an amputee anyway: an amputee in the U.S. could use a keyboard and / or dictation on their computer. An amputee in Afghanistan? How bout that.
Or what if I wasn't a software developer and so couldn't write a few quick macros in my code editor to do a few of the more repetitive two-handed tasks? Or what if I had lived by myself and had a few more limitations? The experience is just not that unilateral, and I can't with any intellectual honesty claim to know what it's like for a long-term hand-injury, or someone missing a hand.
I could claim so, if I wanted to feel enlightened or tell my friends what a deep conscious person I was. Course, knowing my friends, they'd probably just laugh and trow beer bottles, and I might just laugh and throw back.
leo and Cody are right. considering this guy has his sight to fall back on, all he's doing is playing around. and, I'd venture to guess that if he were to actually go blind, someday, he wouldn't be able to find his way out of a paper bag, so to speak.
Thanks to those who have been respectful and understanding, and especially to those who have offered suggetions. The rest of you obviously don't get it. No one saying that the experience of a blind person (or of anyone else for that matter) is universal, and yes, there are advantages to havinv sight. But he has tried to minimise these by wearing patches, which let in no light, and which are more difficult to remove than a simple blindfold. He has also been in various situations where he could very easily have given up and cheated, but chose to keep them on and continue doing the task using an adaptive method. He has been doing this for almost two years now. So it's not as if he spent one day blindfolded and claimed that he gained skills in independent living.
it doesn't matter how much time he spends blindfolded, or in patches that make him look like a dumbass. he still has no idea what it's like to live, day in and day out, in unexpected situations that life throws at us, much less when life is generally going well.
The benefits in doing this are obvious.
It is how cadets in police academy train, how recruits at bootcamp take up their time. They go through a variety of endurance, psychological, and physical exams in order to gain and develop indispensable life-saving strategies and skills, all to prepare for their duties. In like manner, many mobility instructors undergo a period of simulating blindness in order to glean from that experience a level of understanding so as to better help their clients. It puts them at an advantage. People who have been trained in their field know the value of having experience gained through training to fall back on when out in the real world.
Moreover the empathy and wisdom one gains from such training or “experimentation,” as defined in the first post, are neither pointless nor worthless. As mentioned above, it puts one at an advantage in several ways, not only in combating blindness. The sooner one can begin to embrace a crippling disability such as blindness can be to someone unacquainted with it, the easier it will be to accept and adapt to the condition, as well as to confront the various viewpoints held by the public at large.
For many folks vision loss transpires without warning. Ask any of them and without exception they would never pass up the chance to prepare for life in complete darkness. I found myself at a disadvantage when I came face to face with blindness, but, as I had no foreknowledge of what would come, I had no other choice but to rely on my wits.
The willingness to undergo preparation such as the kind illustrated in the first post is commendable. No such undertaking is free of stress, particularly when considering that the same condition simulated by the individual might very well be permanent to him or her someday.
Humans can be taught quickly to appreciate the smallest things. Take away the physical capacity to go out and get the mail every morning, forbid a pleasurable activity, no matter how habitual or simple, and the distress they experience will be hellish.
My only suggestion: Blindfold him and have him manipulate objects of different shapes and sizes, large enough for him to handle with his hands, and have him organize them neatly in some designated corner. Such tests are administered by governmental agencies to assess the severity of a client’s disability, in this case vision loss, or to determine whether employment is still feasible. Maybe assembling a model plane would also work.
The patience one can develop from performing such painstaking tasks will prove essential when dealing with blindness. Not only will muscle memory improve, but the demands of the occipital lobe will also not seem so merciless. We take for granted so many things, until by some chance we no longer have all of our faculties at our disposal.
When all's said and done, he will be grateful for the time he took to inform himself and prepare.
I strongly agree. And again feel he is being wise.
Even if he doesn't go blind, he at least will understand to a point what it is like.
Raskolnikov:
I really appreciate your post. What you've done is demonstrated, from a rationalist and humanitarian perspective, how this could in fact be beneficial and useful.
I'll admit I am skeptical, not because of any emotional reaction or blindnesss orthodoxy (even the idea of such seems ridiculous to me).
But you've laid out a clear and rational argument for how this could be done, by a rational thinking individual wishing to prepare oneself.
Tiffanitsa, skepticism on its face is not disrespect. Part of the problem with the echo chamber of some places on the Internet is, it's an awful lot like a small town or church where everyone agrees with everybody, can formulate apologetic arguments and sound really smart, without ever really taking the situation apart and doing that. Us skeptics / rationalists tend to forever take things apart and look at them objectively, as much as we can. Naturally we all have emotions and want to think we're being rational when if we're not careful, we're giving way to confirmation bias to what we already think.
But skepticism is not disrespectful.
Again, Raskolnikov's post is the most well thought out I have ever read on this subject.
Again, thanks Rask for your observations.
I look at this sort of thing as a sighted person under blindfold as having only a small taste of what our world is like.
if you travel to another country, for example, that doesn't mean you have a full understanding of how the people who actually live there go about their lives. you may certainly have a better idea than before you had visited, but that's the extent of it.
Yes Chelsea is definitely right there, i'm sorry.
I still think it is commendable, though.
My hat's off to this guy. He's gaining experiences which may never be necessary, but almost all experiences have some benefits.
He is learning to use his other senses as aids. He is learning that sight is not the do all end all faculty that many think it is. And, I suspect, he is having fun doing it.
For the past few years arthritis has forced me to type one or two fingered, rather than the traditional method. I sure wish I had played around with this method before it was forced on me. One advantage to typing two-fingered is that my board entries are shorter than they would otherwise be. <lol>
One never knows what little surprises life has in store for us.
Bob
Nope. Life is apt to toss you under the bus.
No, we can't prepare, but if we have a head start, it seems a good thing, even if he never goes blind.
He has learned how one small community has to go about life, and just for that reason, I'll agree with other here that say he's doing well.
Thank you, Raskolnikov, for your post. It made me smile, and also gave me several things to ponder. I think Lee is well passed the point of recognising and organising simple objects, but it would be exciting to see if he could build something. He loves models, especially planes, and I'm willing to bet this will be one of the most challenging and enjoyable experiments we've ever done!
LeoGuardian, I wasn't referring to you when I mentioned disrespect. It is perfectly normal to disagree with someone and to state your views. That is the very essense of debate. It's all in how it's said and done. To be fair, no one here has truly been disrespectful and out of line. It's just that some take this as a joke and think that hardly anything can be gained from it, which is not true. Instead of at least appreciating the time and effort that he is putting into this, it seems that some here are putting him down for it, or think that the idea is foolish and stupid. As I said, no one is claiming that this will give him an 100% factual experience as a blind man, just as me not eating certain foods and measuring my blood sugar for a week won't give me full knowledge of what it's like to live with diabetes. But I would get an idea of some of the struggles that he faces, as he is doing here.
I completely agree with post 15 and others who've said it's beneficial. No one
has ever said he'll understand completely what it's like to be blind, but he has
an idea. As has been said, very wise and commendable.
Right. Reread Raskolnikov's post. He makes a rational, if unorthodox, argument.
For those who would aspire to rational objectivism / nontheism of one form or another, the highest achievement for us is to remain rationally ojective where our emotions and tendencies to orthodoxy would otherwise cause us to react differently.
I responded one way, I was demonstrated in some ways to have been wrong by Raskolnikov's post, whether he set out to do so or not.
Go reread his post: take the blindness orthodoxy glasses off for a minute, look at it objectively without your apologetic terminology. He never said someone would fully understand 'what it's like'. That was never the point. For us nontheists / rationalists, we have no excuse for not doing otherwise.
Our world? Seriously? It's their world too. We live in the same world as those with sight.
Blind people spend loads of time moaning that nobody understands us, nobody takes the time to try and see what it's like for us. And then when someone takes a heroic step to not only understand how it is for us, but to address his own pain and fear into the bargain, all we can come up with is that he's playing? My goodness, guys, that's really, really telling.
If we're ever to achieve that seemless integration into society that we all complain about, whine when we don't get, and seek so desperately, we have to drop this "us and them" mentality.
During physio training, I spent a week in a wheelchair to try and get an idea of how it was for my paralysed patients. Did i become a paralysed patient? No. What I became was more aware of the frustrations and difficulties they faced on a daily basis. That put me in a better position to help and empathise.
This guy is not doing this to understand what it's like to be blind. He's doing it to prepare for his own eventual blindness. He's doing it to understand what it will be like for *him* to be blind.
I think he's a very strong guy, as the amount of personal pain this is causing him must be immense.
Tif, have him do fine detail work with his hands as much as possible. Do really fine motor tasks like sticking tiny pegs in tiny holes, arranging objects as someone else said, reaching and moving and carrying things while walking without falling or bumping. Work on echolocation and spatial awareness. Make him estimate how far away something is before he touches it, that sort of thing.
I've done rehab with some folks newly blind, so would be happy to help out and chat through experiences and help coaxx out details if he would find that useful. If so, just let me know.
Well said Funky.
Thank you, funky monkey, for your thoughtful post. But I must clarify something. While Lee may, in fact, go blind someday, it's not an immediate concern. He started out wanting to know for himself, but for now, it's really so that he can understand the daily lives of those who are blind, such as myself and his girlfriend. That said, he has told me that he does feel far more prepared if he ever did go blind, and that he is not afraid of it. So really, I think both goals are being accomplished here.
@Post26:
Here we go, more rationalist enlightenment. See, this is how some of us fools outside that industry actually learn something. So, thank you. I'm married to a educator, so I do get some of it, or rather, I can appreciate what goes into what you all do.
Do excuse me, I must take a tiffashitsa.