Ken posted some observations on the Mariposa Online (MOL) email list. I want to post my thoughts about his discussion here.
People with disabilities (seems to me) meedlessly invest much energy in:
- trying to prove they are not disabled -- not really
- trying to conceal how limited they really are (much could be written on the various strategies you have used for that)
- trying to prove that they don't need any "special considerations" or "special treatment" (e.g. declining the courtesy wheelchair at airports)
- trying to avoid adaptations that although useful in lessening their disability, would, in their assessment, increase the stigma associated with disability (e.g. walking unaided when a cane would greatly help, using a simple cane when forearm crutches would greatly help, using crutches and refusing to use a wheelchair even when it would greatly help, keeping the white cane folded in purse or pocket when it would greatly help, etc.)
- trying to do things exceptionally well, specifically to demonstrate to others that "even though" they are limited, they have compensating virtues
- trying to avoid being helped by anyone (the social value in the U. S. placed on "being independent"; not wanting to be helped for fear of being seen as needing help; etc.)
This list will hit different people in our MOL group in very different ways, and yet I am sure that everyone has personal things to say about one or more items on this list, and if each one would respond, analyze, confess, critique, comment etc. on at least one of these items from your personal perspective, including, where appropriate, where you were once and where you are now, such responses, when edited and compiled, could, when put into the hands of some young person with a disability, change her or his life, just as they read those few pages.
I could write volumes on examples of how I've seen these play out in the lives of people who are blind. I'm having difficulty pinpointing difficulties in my own personal life where I was "too independent" or resistent to needed accommodations out of a desire to not appear disabled. I can think of instances when other people might have interpreted my resistance in this light, but I had other reasons for resistance and I think that it is important not to assume a lack of acceptance but to ask questions and create a climate where the person feels free to express whatever emotion he/she is feeling. There is a difference between resisting an adaptation because it makes me feel stigmatized and resisting it because I don't want to be disabled. At least there is a difference in my mind: I may resist an adaptation that is extremely visible but accept one that is less visible or more "socially acceptable" and accomplishes the same purpose. When dealing with blindness-related needs these choices are sometimes possible but can have negative consequences. For instance, if a person chooses to use sighted guide instead of a cane because she doesn't want to "look blind" (never mind that she will still appear blind by hanging onto someone's arm), she will be limited to when and where the guide is willing to go.
I have difficulty writing about these things because in my life the struggle is not against appearing "normal" but against being myself and having autonomy. I grew up using alternative techniques, and the only one I can recall resisting was the cane. I've written extensively about this in the past and won't rehash it here. I understand that to an outsider it would appear that I simply didn't want to be different or look blind. Perhaps that was part of it--I certainly didn't want to look different. But if someone had had a heart-to-heart conversation with me, I wouldn't have argued that braille made me look different and I didn't mind using braille. Glasses made me look different and I wanted to wear glasses and was very angry that doctors wouldn't give them to me. The difference itself was different. The cane expanded my personal space to an area beyond my own body. It made me vulnerable to other people in a space that I could not control. If someone tripped over it while I was sitting at my desk and got mad, I couldn't tell the person to stay out of my space because my cane would be sticking out alongside other desks. Beyond this, I didn't have an adequate understanding of my need for the cane. I had always gotten along well using my vision and had been protected from bumps and bruises. So why use a cane? I could see perfectly fine--or so I thought. It wasn't a denial of my disability. It was a seven-year-old's lack of understanding. Sometimes that lack can persist for a long time.
Certainly a dog is no less visible than a white cane, and I can't hide a dog away. So why do I prefer a dog. I never prefered a folding cane because I wanted to hide my blindness. I preferred it because it's humiliating to have people tripping over something that draws attention to me when they aren't anywhere near my personal space--and that has happened to me a number of times. I like to get to my seat and then be able to fit into a reasonable amount of personal space, and a folding cane allows me to do that. A dog is a bit more conspicuous; but the added conspicuousness is worth the advantage of being able to walk a bit more freely. Each of my dogs has fit relatively well into a space that I can define as "mine" even if it's a bit larger than I might otherwise like. In most settings the dog goes nicely under my chair, and when she doesn't go there she goes at my feet and at least makes a good conversation starter. (That's one of the things that makes one adaptation more "socially acceptable in spite of its potential added inconveniences.)
I often really do get unnecessary offers of help so appear to refuse help just to prove something. Sometimes I refuse it because I expect to be able to do something (because I've done it a hundred times before with no problem) and then encounter an unexpected problem. Those are the times when I feel most embarrassment and shame. I should be able to do this, but is the person watching me and thinking how stupid and arrogant I am for not accepting the help or for trying to do something I obviously (in their opinion) couldn't do? One example is the situation of getting to and from the job interview last Monday.
I was excited because the location is only three blocks from home, and there are sidewalks all the way. This means I could learn the route ahead of time and walk there without assistance, just as I would do every day if I was hired. This was important to me because one of the common hang-ups employers seem to have is with my ability to do unrelated things like care for myself and get to and from work. These things aren't really job-related, but if the employer can't see how I would do them he/she won't see how I could do the job.
Dad took me out with Meg, and we learned the route with no trouble. The location was the fourth door in a block of offices. It's possible to pattern a dog to stop at a particular door if the person suggests the turn at the approximate time and distance. Meghan learned this particular location with no trouble at all, and the door also had a different face than other doors in the block. I didn't anticipate any problems.
On Monday morning Meg had not relieved herself despite three trips outside and an attempted playtime--she wasn't interested in playing. She tends to not work well when she needs to relieve, but I figured she would just have to work well anyway. Of course, she did not. She stopped to relieve along the way, but apparently she was not finished. She failed to locate the door, and in fact she refused to locate any door even though I made three passes up and down the building. Finally the owner opened the door and called to me. As I went inside, he asked, "How does she know where to go?" There could be no more mortifying question. The answer is, "I have to tell her." As soon as I said it, I could imagine him thinking, "How does a blind person tell a dog which door to go in, and what use is a dog if the blind person is telling the dog where to go?" That translated into, "Blind people can't travel independently," and my dog had just proven that for me. All the other times we had successfully arrived at this or that destination didn't matter--he hadn't seen them. He had seen this one, and this was his first impression of me as not only a person but a potential employee. What a time I would obviously have getting to work! No wonder I'm not high up on his list for consideration!
Going home wasn't much of a consolation prize. It should have been easy! Go to the end of the block, cross the street, turn left, cross that street, turn right, walk two blocks, and give Meg the "go home" command to find our walk.
It didn't work. We went to the end of the block, crossed, turned left, attempted to cross twice but the alignment was wrong so I refused to allow her to cross, finally crossed, turned right, walked two blocks... But something was all wrong. The buildings were too close to the road, and there was construction going on where there shouldn't be. The last street had been too quiet. We weren't on the right street! I attempted to go back, but she crossed diagonally again. I finally called Mom to come and take me home. Some professional I am! I'll have no trouble at all getting to and from this job!
I don't want people commiserating with me and reminding me how horrible it is to be blind. I already feel enough pain. I don't care about being blind. I care about being able to function as a blind person. I've been raised to believe that blind people can live successful lives, and that's what I want to do. If I'm going to talk about wishing I could see, it will be for other reasons (because I want the experience of seeing). I know that there are other answers besides not being blind, and what I want is for those answers to be valid. But often when I talk about these things, what I get is, "Don't you wish you could see?" And then I feel like I'm supposed to feel bad about my blindness, and I can't manufacture that feeling.