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On MOL, we've been discussing "pretenders," people who use wheelchairs and braces even though they physically don't need them. Ken has posted some comments from people on another forum, and we have been responding.
"Black one" wrote:
What many in the disabled community are not aware of is how disabling mentally and emotionally is the life of a pretender/wannabe. To my knowledge there is no medical or psychiatric/psychological help available to us and if you think the abled-bodied world is hard on the disabled, wait till they get wind of us! Who is going to counsel the broken-up families or sympathize with the ridicule, lost jobs, lost friendships etc. Our lot is made for Jerry springerTV.
All of this pretending stuff is truly bothering me. I don't know if my feelings reflect those of anyone using chairs, braces, etc. I only know how I would feel if I met someone walking around with a white cane or dog guide, pretending to be blind. I would feel a mixture of things. Yes, there is a part of me that feels compassion. If this is a psychological problem, there *should be* help. I also feel anger. It's easy to mimic the physical circumstances of disability. But you absolutely can't simulate the emotional impact. I'm not saying there is no emotional impact, but it's entirely different as "black one" has described here.
Simulation is a common practice in educational environments where people need to understand the practical impact of visual impairment. There are goggles people can wear that restrict visual abilities in various ways, and of course there's the trusty blindfold. It doesn't bother me to think that people might simulate for a little while so that they can understand what blindness does and does not limit. I feel much better knowing that most of these kind of simulations are guided and that the person isn't just plunging in and realizing all the things he/she can't do. It's very important to realize that there are alternative ways of doing things--cooking based on texture and smell instead of color, reading using magnifiders or braille or auditory output, etc. But I don't want someone simulating blindness just so they can supposedly identify with me or share in my struggles. If someone has full use of their eyes, I would so rather have that person take an active role in finding ways to include me in "normal" activities! That's generally the purpose of simulation: spending a limited amount of time gaining understanding of physical abilitied and limitations and then putting that understanding to use in teaching skills or adapting activities or the environment so that the person can participate. I need this far more than I need people to look or act like me or say they understand what I experience. They don't. The physical limitations are just the tip of the iceberg.
There are aspects of disability that will never be understandable, no matter how many braces or blindfolds a person wears. I know that for some people, the physical limitations are the easy part. The hard part is dealing with the intense and chronic physical pain caused by the conditions that cause the physical limitations. Then you have additional disabilities on top. For instance, I have the migraines that cause perceptual problems on top of blindness. No one will ever be able to simulate the feeling that comes when I know that while I'm standing at a street corner I have a totallyinaccurate perception of the way the traffic is moving because my brain is doing back flips and mixing it all up like a cake. Or how about knowing that you just dropped your plate of food for no other reason than that your hand is too weak suddenly to hold it? How about hearing everything through some kind of distortion? Slurred speech? Maybe drugs can induce some of these effects, but there again the emotional impact is completely different. It's completely different when you live with it every day, especially when it's transient.
One of the things that means the most to me is my dad's efforts to explain visual concepts in relation to the experiences he knows I have had. He doesn't try to explain color in terms of texture or heat or smell; but he explains it in terms of lightness or darkness, intensity, etc. Color is visual; I accept this. It bothers me when people try to turn something that is visual into something that isn't--and these attempts usually fall flat. It doesn't bother me to know that my dad can see and I can't. It bothers me when he expects me to just sit by and wait while he does something simply because it would take too much time or effort to incorporate some nonvisual techniques or features so that I can participate. Thankfully, this doesn't happen often and I have a very good overall relationship with my dad.
We talk on MOL about living our disabilities fully, honoring our bodies... I would include in this the fact that nondisabled people need to honor their bodies by living their abilities fully. Don't hold yourself back because you feel "compassion" for me. Do what you're able to do, and learn how to use real compassion and ask me what would make me feel included. Take time out to talk to me and do some things with me that we both can do--me with my alternative techniques and you with your eyes. What a tragedy that black one's family and other adults never helped him (her?) learn how to include that cousin fully while retaining his/her own identity! I tend to believe it would still be possible to learn this, to develop one's own identity. It wouldn't be easy, but it would be possible.
I think the other reason the pretending is offensive to me personally is that living with mild and transient disabilities puts me in a very difficult place. People really do think I'm pretending when I'm not because they see me at my prime one day and confused, weak and even incapacitated the next day or even the next hour. *THAT* really shakes my "identity." I can't identify with people with disabilities because sometimes I am able, and I can't identify with people without disabilities because sometimes I'm not able. In this respect, blindness was always "easy" for me. I was always considered "blind" even when I had some usable vision. Many people live on the border, expected to function normally because they can read newspaperprint but unable to drive or, perhaps, tp see what's happening 20 feet away. They aren't pretending, and we who have more severe disabilities have to learn to appreciate the fact that their limitations are significant to them. We exercise compassion by acknowledging that it's frustrating to be "in the middle" and allowing the person with "partial sight" to be helpful to us where they can and in return being helpful to them in ways that we can. The idea that someone might have normal sight but willingly choose not to use it is very difficult for me to swallow. I should put in a side note here that this is completely different from knowing that someone has a problem with visual perception, in which the brain is unable to make use of visual information. I treat that person as visually impaired.
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