Possible Disability Tension
Recently, on a neighborhood listserv, I found out that I have a disabled neighbor. I have never met her or even seen her around. And, for a while now, I have been tempted to run out my door and belt around the complex looking for her ramp. I've seen a van parked outside sometimes, but didn't know that the driver lived here. I've thought about emailing her. A neighbor? A potential crippled friend?
My excitement has been diminished by a number of things, though.
On the listserv, she is the person who can't come to any meetings, "because she is a quad, ...." She can't help with any neighborhood projects, "because she is a quad." I'm not sure what's up here. Many others are not participating -- it's a no questions asked, opt-in only system. We don't need to know, and no one else has volunteered any excuses. The vast majority of the meetings have been held in a spacious, visitor friendly (as long as you don't need to pee) house, so I wondered at first whether accessibility was her issue and she was too scared to speak up -- I've certainly been there. Or whether she just needed someone to volunteer the information that their home was accessible and explicitly extend an invitation -- I've been there, too. Perhaps, she just thinks it's polite to explain why she is not helping her community out.
About two months ago, I realized that she was the woman I have been seeing in a number of local paper articles. The articles are the usual -- "inspiring group of "x" help disabled woman to ..." All the pictures show her being glad to have been helped. She's become quite the local human interest celebrity. Because the local reporting around here is so crappy, I can't tell whether or not she is happy to have been featured in this way. The articles are part of the usual collection of stereotypes and cliches, so it's hard to know whether this was coverage she desired or whether this was editing to fit a preconceived image.
Does she keep mentioning her disability because she hopes to elicit a certain kind of overly sympathetic, faux-caring response? Or does she mention it because she is simply frustrated? Is there some other option that I'm not thinking of? Could she be mentioning it because she has seen me and wants to make contact, but doesn't know who I am? But if this is the case, why is it only in the negative?
I don't know what to think. I am uncomfortable with the way she and her disability enter into public consciousness; I am scared that her self-presentation will make it more difficult for me to be comfortable with the other neighbors -- I don't want them to think I do my disability stuff in the same way. On the other hand, I don't know her or her circumstances, and it might be that she is equally as unhappy with stuff but cannot find another way to get some basic access needs met; she might be shy and uncertain about how to enter this particular TAB community -- she might find an explicit invitation welcoming, indicative of a certain openness. Not everyone has to have the same understanding of disability to be accepted into community.
To get any answers to these questions, I would have to ask her. Make contact with her. But I don't want to do that. I'm kind of annoyed by her "I'm so disabled that I can't" email persona. But, at the same time, I don't want to be rejected by her (for whatever reason). Nor do I want to find that our takes on disability and disabled experience are irreconcilable. I don't want to befriend a victim; I want a friend who will laugh with me as we walk together down the street to terrorize the very very nice people in a local coffee shop.
Could some of you interwebnet people just move a little closer?
13 comments:
Wish I could move closer--I used to do ballet and would love some classes I can do.
I have found myself mentioning disability to people I don't know because I feel guilty that I can't do certain things and because it's also created problems when I haven't. For example, one elem school teacher last year tagged me early in the school year as uncaring parents when I needed communication by phone or email rather than in person, and would not communicate with us about the academic problems our son was having--not even notifying us he was failing during a teacher conference!). And even people who do know often don't realize the extent of the limitations, why I can't help out as much or in certain ways.
Basic care from getting dressed to therapies and breathing treatments to managing basic daily tasks and staying on the phone/corresponding with insurance, Medicaid, and drs offices takes up almost all of the day for one of my friends who's on a ventilator. As much time as my own disability consumes (ten hours of PT/drs. appts/procedures a week, lost work time to insurance/transportation/logistical issues, lost time for anything due to pain), my friend's consumes far more time. The computer is a blessing for her in order to keep in touch with others. It may be the same way for some quads.
I can see the annoyance if she is constantly mentioning disability, but you may be right that she wants an additional friend or community.
It is difficult, isn't it, to feel we represent the disabled community in general? And that people may judge/develop prejudices based on really small sample sizes. Wise people won't, though, and that's who you want to give your energies to anyway.
Possibly she's new to the wheelchair lifestyle? That sounds a bit like how I was acting my first three or four years in a chair.
If she's depressed, the chair might be all that she can see?
And there are some people who self-victimize--I should have said that earlier. It is possible that she does.
Part of the problem with this stuff is sometimes we are simply handed an identity when we become disabled - or as we're growing up - and it takes something fairly dynamic before we realise it isn't the only one available to us. During my first years of illness, I felt that I had to explain my entire life in terms of illness - in fact I'm sure I became quite boring about my medical history every time a limitation cropped up.
It is also possible to get hooked on sympathy. Not that sympathy itself is any kind of buzz, it's just that you can get to feeling that if people don't actually feel sorry for you, then they're going to think bad things about you - its sympathy or bust. But as Lady Bracknell has often said, people who feel sorry for you aren't going to treat you like an equal.
But we miss that, because the possibility of being treated like an equal simply didn't occur to us.
So I can have some sympathy with where this lady may be coming from. And I think when you come across someone like this, the only way to tackle it is by example. I would predict that you'll either not get along at all (because she's a quad, and she can't go out to the coffee shop with you because she's a quad). Or knowing you may revolutionise her life. I can't envisage much middle-ground.
Thanks, you all. I'm intrigued by the added perspective; I feel a little less impatient. I do know how basic care can absorb your time .... I do remember how it was when I first started using my chair. I also remember that I was carefully nurtured and looked after by disability+ peeps from the very beginning. My eyes were opened very quickly; not everyone has that good fortune.
I will have to ask her out for coffee... I'm a little scared. I don't want to be turned down. And, well, either we will both see stars or there will be ructions.
:-)
WCD
I understand your nervousness, and agree with Goldfish there may not be much middle-ground.
Like raccoon, I too have difficulty getting comfortable with my disability and knowing when to mention it and when I really don't need to.
I should clarify that I really didn't mean getting used to a chair and a new identity is self-victimizing--what I meant is that some people, with or without a disability, always want attention for their particular ups and downs in life, and for those people it's not a temporary issue. We all know people like that.
I thought of this idea before I read the additional comment from raccoon, but in the context of that comment, what I said sounds mean, and I apologize. I am negotiating the new visible identity myself, so I definitely can't point fingers since I'm bumbling through.
Some folks need a couple-three exposures to learn to trust even thinking about such a new idea as getting out. Some are afraid of trying someting new like that—who's going to handle it if some problem comes up? It's always been a TAB when she's been out anywhere before I'd guess. Your fellow-wheelie status may lead her to conclude you wouldn't be enough help if! And as for your reports of doing such out there by yourself, well, some kind of young daredevil who didn't appreciate the nameles risks of it all, and besides, you know, *you're* not a quad, after all. It's really not the same for *you* at all. And anyway you're young, maybe attractive, and people would of course come help you, but how about somebody like her? Not!
Anything you could gather about her from the media things? Looks, facial expressions, very high quad with sip/puff chair, or somewhat workable hands, age band, background info? Those leetle things can count too.
—smiles, OT
I've been tempted to approach people in my community with similar disabilities to me as I wish to be part of a disabled social network.
I am always concerned that they wouldn't wish to associate with me as it would draw 'added' attention to our disabilities. Or that it would be presumptuous of me to assume we actually had something in common.
People contextualize disability in such different ways. A few disabled people, with whom I have attempted to discuss disability, have been insulted that I would identify them as being disabled. They wished to distance themselves from disability entirely, even from associating with other disabled people.
While I agree that how long ago it happened and how much time she needs to get a routine down and feel safe are important, I too would feel a bit odd with a "I'm a quad so I can't...." as someone's official internet position.
The first few months I realized that I would NOT be able to compete in work, or recreation, or almost any space with my previous able bodied companions and I did feel this pressure that I had to be super-crip, that people were expecting me to be the new Stephen Hawkins and I was tired, and sick and in shock and then I adjusted and I don't really compare myself anymore and like you, I would LIKE to meet some people who are not from AB world, and hang. Too bad she doesn't seem to be in that head space.
Thanks for posting this. I thought about some of the times that I've said "sorry, but no, because it is too difficult w/ my disability" on mailing lists in public. I try not to say I can't... but I do say "I won't" and I let them know why. For me it is kind of hard to say "because I'm disabled" as well as to say "It's difficult" so it's an exercise for me in a good kind of boundary-setting.
p.s. I am like fridawrites specifically thinking of dealing with my son's elementary schools, where expectations for my time and volunteering and etc etc. are pretty darn high, and they seem particularly ignorant about disability.... like if there's a ramp everything is magically okay for me.
Just wondering if you ever met your neighbor and how that went?
I've written her several notes... but haven't decided to send her one.
Ahh.. Idea occurring .... I could post it and let you guys decide on how to meet her.
WCD
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