Apologies for the ungrammaticality of the title, but the correct version, "I am you," lacked the rhetorical force I wanted. This is a rant. An angry little rant, inspired by those who sit in wheelchairs and avert their eyes with a noticeable recoil of their bodies when they see me coming. Are you one of "those" people? Listen up.
You are me. No, really. I want you to remember that every time you avert your eyes from me. Seriously? Do you think I don't see that little shudder of yours? Do you need to hold yourself so separate from me? It's not as if we aren't both sitting in wheelchairs. So, why do you think you are so different? Are you so afraid to see yourself in me? And in what I represent to you? You may think that yours is a temporary situation and that you aren't really disabled -- you aren't one of them, really -- because, well, it will get better, you can get up, it's just temporary, you know, because you can't walk long distances. It's just your leg, your back, your illness...
I have some news for you. Stop trying to judge disability by level of function. Just stop. And take a really good look at yourself and your fears. Temporary, your physical impairment might be. But for the meanwhile, my life is better than yours. I am less "disabled" than you because I can live my life in my wheelchair. I know some of the history of disabled people; I participate in our culture and society. I have a place in our world -- as you do, too -- but I accept and live out to the very fullest my life in this place. I know how my chair works, and I am comfortable in it.
And what about you? When we pass, I sometimes see what might be described as fear, embarrassment and/or shame in your eyes. And I know those things. But I have also learned that you cannot live in that space forever.
If you can accept how much of yourself you see in me, your life will be changed forever.
You are me. I think sometimes people who are temporarily disabled or newly disabled feel afraid of being called out on it, or like a faker--maybe, I don't know. I felt that way as a kid--like other people had "real" disabilities, while mine didn't qualify for either category. But it does aggravate me, the lack of eye contact--not sure if it says they don't want to be like me or if it's awkwardness from a liminal status.
ReplyDeleteWord verification: crieda; like Frieda with a creed.
I've seen people do this who were long-time paraplegics too, I don't think it's limited to the kinds of people you mention. It's basically anyone who's afraid to identify themselves as handicapped.
ReplyDeleteFor what it's worth, it's JUST as annoying to be approached by someone who thinks you have to be best friends just because you're both in wheelchairs. Or worse, someone who wants to play 'whose is worse' with diagnoses. Ugh!
Thanks for writing this, though, I started to blog about this a while back but never finished the post.
A quick introduction; I'm speaking as a fellow wheelchair user with a permanent disability. I've got a rare form of Muscular Dystrophy, but also a very mild case of it. As such, I've been a part of both cultures at some point. I use a manual chair and I've just finished my junior year of college.
ReplyDeleteOnce I was old enough to accept and embrace my disability, the very topic you've just written about was one of the first things I noticed. Even though I see your point, I also can't help but wonder if that awkwardness exists because people barely know how to react to a wheelchair without actually being in one. Being in a wheelchair just throws another variable into the equation...it's like the recently-injured have barely come to grips seeing themselves in a wheelchair, nevermind what social rules apply when they encounter someone else in a wheelchair.
As irritating as it is when someone does what you wrote about, I've found the best reaction is to smile, or if appropriate, make a nice comment about something they're wearing or whatever. It certainly helps the other person feel more relaxed, perhaps more accepting of the situation they're in.
This is another excellent post on something I face as well, though I have had my chair for only one year, this was one of the first things I noted from people in public: Fear of looking at me as though I carry some contagion they risk acquiring.
ReplyDeleteI recently shared this and other examples of ignorance with two sets of med students who came to my home. They were astounded, and I would venture to guess,had really never thought about the level of ignorance those of us who live with disabilities face. Like you, I stress disability as a form of variation and encourage them to look beyond levels of function or impairment and see disability as adaptation.
Congratulations on your citizenship...
Like gimpafire said, I run into even other apparently long-term paraplegics who give that "not like you" vibe. But I think in past years I've done it myself. It meant, "You and I may both be pwds etc, but you don't look like you're one of my sort, my club." Sometimes it was the mensch club, sometimes it was the cool/hip club, sometimes it was the knowing club vs. clueless club. Sometimes it was the radical or activists club. And I would know this about them by their threads, their pomades and do's, their posture, well, their looks, their faces. Anybody home, y'know? But you? You look pretty obviously present. So if such a somebody's that way with you, yeah they're uptight somewhere.——OldTimer
ReplyDeleteI had an interesting experience on a forum I used frequent which was for disabled people but it quickly because obvious exactly what type of disabled person was welcome there. The type I like to call 'Super Crip' - you know, the over-achiever on wheels who revels in their 'can do, more sporty that I ever was on two legs' new life and makes the regular person who's just glad to survive a shopping trip without kissing the pavement feel utterly inadequate (haha). This group were also 99% formerly able-bodied with a nice line in total denial.
ReplyDeleteWe had a newly disabled person join and he was naturally experiencing fatigue because he'd never pushed a wheelchair before, or had to think about how he moved and balanced his body and wanted to know if he'd get better at it. I explained the 'Spoon Theory' to him and for a while it may be a good idea to live by that until he learned how his body worked and what it could take in this new circumstance....
Oh boy, was I savaged!!
'You might think it's ok to give in to your disability, but we don't!'. Was one reply to my comments to him. They were basically letting me know that accepting your limitations so you don't completely wipe yourself out is a sign of weakness as far as they were concerned.
I stopped posting there after a while as there was only one other person there who had Spina Bifida like me who could actually relate to things I was describing, but what shocked me was that all of these people were still essentially in the mindset of an able-bodied person and had the complete lack of comprehension and compassion for those who weren't able to 'Live the Dream on Wheels'!
I must admit that I have been one of those people who at various points did not want to relate to other disabled people because I had been brought up as a 'normal' child, and so never felt part of that 'disability culture' I read about. Being disabled is still a source of self-loathing and embarrassment to me in my darker moments, I'll freely admit that. But I'm working on it :).
I do see where you're coming from here because things won't change for disabled people unless we stick together, regardless of our individual disabilities or how we got them, but at the same time I can totally understand it because I had a true identity crisis, not belonging to one group or the other for so long that I try to have a little compassion for people who feel awkward around anyone who reminds them of something about themselves that they haven't come to terms with yet.
You make a great point but I can't help but think that this is the fault of the disabled community in general. I hear two opposing views: 1) focus on the person, not the disability, and 2) people disabilities should embrace their diversity. I find them conflicting, but both are widely advocated.
ReplyDeleteThe reason I bring up these two opposing views is because it may be the reason for the awkward encounters with other people in wheelchairs. Should I say hello and acknowledge a fellow wheelchair user? Or should I pretend my fellow wheelchair user blends into the crowd, just like any able bodied person?
Interesting observation nonetheless.
It's so very true. There tend to be some awkward social dynamics when two people in wheelchairs meet. Sometimes it's like you described, when one person avoids even looking at the other. And other times it's like you're *supposed* to be best friends, because you both have disabilities. Either way, awkward.
ReplyDeleteI think I used to tend a little bit towards the camp of those who avoided eye contact. Only because I was so bothered by the assumption that I was supposed to have this great connection with anybody else in a wheelchair.
But mostly now, I figure that it's much like when I meet somebody else who comes from the same state as me, who went to the same college, who's a member of the same religion, or has the same career. It's one major thing that we have in common, and deserves some acknowledgment of shared experience, because it's nice to connect with people. But it doesn't mean that we have anything else in common, and doesn't mean that we should necessarily have any major bond.
In college, I remember there being this guy in a wheelchair who'd been paralyzed in some sort of an accident, not that long before. I saw him all over the place, and he always looked angry at the world. He made a point of avoiding eye contact with me. We ended up living in the same apartment building (not that coincidental, there were very few accessible housing options), and he'd still avoid me. On the one hand, it made me angry, but I also just felt really bad for him. It was obvious, to me, that he wasn't comfortable in his skin or in the disability community yet.
One day, in the middle of the semester, he up and moved out of state. I never really did know the story. But probably two years went by, and then one day he showed up back at school and back in my building again. The first time I saw him on campus, he came right up to me and started a conversation. I could tell right away that whatever he'd been doing the last couple of years, it had been good for him. His entire demeanor was so much more open, friendly, and peaceful. He didn't seem angry anymore. We never did become friends really, but it made me so happy to see his transformation!
I try to remember that guy, and not get offended when other people with disabilities don't want to acknowledge what we have in common. Disability is a journey, whether it's new, or something you've dealt with your whole life. I shouldn't judge anyone for where they are on that journey.
But it's really unfortunate for all of us that there's so much division within the community. It's hard to unite for a common cause and for social change, when we can't even accept each other and accept our own role in the community.
I don't meet the eyes of other wheelchair users; I'm autistic.
ReplyDeleteThere are more reasons why someone would do that than just shame or bad feelings, some might indeed be of that type, other may have things like autism, or be worried about seemingly rude especially if the other person thinks they're staring.
I'm not saying you're wrong to feel this way, just that you might want to consider that not everyone who looks away is necessarily doing it for the wrong reasons. Some of us just aren't comfortable with eye contact.