Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Sunday, February 20, 2011

The 7 people who ask you why you're in a wheelchair


I know this is true for pretty much any disability that’s visible in some way.  I’ve seen it happen to people with hearing aids, crutches, and the like, to people who have a noticeable limp or speech problem or anything like that.  I’m using a wheelchair in most of my examples because it’s one of the most obvious and universal signs of disability, most consistent with my own personal experience, and I just spent the weekend in Chicago using a wheelchair to get around.  I’ll use gender-neutral terms where appropriate.  I need to rant a bit and I hope at least someone finds this amusing.

1.       Curious Child (and hir mother)

Honestly, you probably saw this one coming.  When you wheeled into the room, Curious Child (usually between the ages of four and ten) looked up at you with wide eyes and an open mouth, and you could see the wheels in hir head turning.  You knew the question was coming eventually.
And Curious Child hirself not really the problem here.  Kids are naturally curious about the world, and it’s hard to be angry at people who genuinely don’t know better for asking questions.  The problem is the Curious Child’s mother, who is, of course, horrified that her child has asked you why you’re in a wheelchair.  You begin to politely explain to the child why people in general use wheelchairs, but the mother is panicking, afraid you’ll think she’s a bad mother who encourages that sort of thing, calling Curious Child rude and apologizing profusely to you while dragging her poor confused child away. 
I’m all for teaching kids that questions like that aren’t polite.  But at that age it’s an honest mistake.  My problem is that this method doesn’t really teach Curious Child how to interact with disabled people.  If the mother wanted to do that, a gentle explanation would be best.  I can remember my mother explaining to me, either in front of the person I’d inadvertently offended or in private afterwards, that that’s not a polite question, but I can never remember being immediately removed from the disabled person’s presence.  I learned how to behave appropriately around disabled people, in wheelchairs are otherwise, and not comment on their appearance.  And most importantly I had a healthy respect for the fact that they were just normal people.
But when Curious Child is strongly chastised for hir behavior, ze has only learned from hir mother that disabled people are taboo and you shouldn’t talk to them.  This is probably what the mother was taught as a child, which would explain a lot about her reactions to you.  Because this is the same sort of mother who will abruptly yank her child away from you if ze is anywhere near you, even if neither of you are about to run into the other.  The first few times this happens you’ll think it’s for your benefit, but it’s really not.  Watch a few times and you’ll see that the many mothers think you have the plague, and any contact with you will cause Curious Child to catch it too.

2.      Sympathy Addict

This person is nearly always female (at least 90% of the time), and usually over the age of 35.  She’s addicted to giving sympathy, and sometimes to receiving it back.  Sympathy Addict may follow you around, shaking her head sadly at the sight of you bravely wheeling your chair through the building (because that’s brave, clearly).  This may happen for a while before she strikes up a conversation with you.  I’m clueless enough that I won’t always see this one coming until it does, so it’s kind of a surprise when she asks why I’m in a wheelchair.
Sympathy Addict is interested in everything about me.  I am simply the most fascinating thing in the world.  My medical history is no longer a private matter but is knowledge that should rightfully belong to everyone around me, and any obvious casts or braces will be pointed out as if I didn’t know they were there (“Hey, you have a cast.”  “No shit.”).  I shift uncomfortably and explain why I’m in a wheelchair, answering questions about what caused it and what I’ve tried and so on, often while listening to Sympathy Addict making strange (comforting?) noises and saying things like “You poor thing!”  Sometimes she will try to describe her own medical problems in a desire to connect with you on an emotional level.  You broke your foot?  She once stubbed her toe on a dresser.  The two of you are practically related.
This isn’t so bad the first time you run into it, but after you meet several of these people a week, you will start to get tired of stopping whatever you’re doing and revealing your complete medical history to a stranger.  (Really.  I’ve thought about just handing out business cards.)  You’re a Bad Cripple ™ if you don’t indulge in at least some of these questions, and if you’re rude to Sypmathy Addict you’re probably not a Real Disabled Person ™.  The best method I’ve found of dealing with this person is to be conveniently in a hurry.  Just hope she doesn’t follow you around all day offering to open doors. 
More annoyingly, this person wants to be your own personal cheerleader, because you need more than anything to be told by a non-disabled person that You Can Do It.  Try to avoid their pep talks.  The more irritated and bored you are, the more elaborate they get.  Your family or significant other will get it, too.  They’re brave for wanting to be seen in public with you, or for ever associating with you, or for not immediately locking you into an institution at birth.  Hopefully your family or significant other doesn’t get off on this sort of thing, because some families of disabled people enjoy having Sympathy Addict around to justify their choices and praise them for knowing a disabled person.  Family members who enjoy Sympathy Addicts, or who are Sympathy Addicts, are extremely annoying.

3.      Amateur Doctor

A specific type of the Sympathy Addict, it isn’t enough for this person to just listen and make strange cooing noises as you explain your disability.  Amatuer Doctor doesn’t have to be involved in the medical profession at all.  Ze doesn’t need to know anything about your disability, or even about the human body in general.  But as soon as your problem is described, have no fear, Amateur Doctor is here!
Amateur Doctor has the answer to all your needs, real or presumed.  Ze knows the right question to ask (Just like a real doctor)!  And once Amateur Doctor understands your diagnosis or has rediagnosed you, ze can roll out so many suggestions for treatment that you’ll think you’re watching TV on a weeknight at four AM.  Amateur Doctors often approached my younger brother when he was in a wheelchair, and when they found out he had brittle bones, they usually glared at my parents and reproachfully asked why they didn’t feed their kid milk.  It really pissed my mom off, because these people seriously thought that we and all of my brother’s doctors were so stupid that they hadn’t thought of that first.  It doesn’t even matter if they’ve heard of your disability before.  They still have an answer for it, because Amateur Doctor has a solution to every problem.
Oh, you’re so brilliant, Amateur Doctor.  I could never have thought of that on my own. Yes, I will certainly ask my doctors for some x-rays on my back, and I’ll add them to the pile of x-rays I have sitting around at home.  Yes, I’ll try some Aspirin, because I need some more drugs and am too stupid to know how to deal with pain.  Yes, I’m sure that homeopathic remedy you took for your cold would do wonders for my broken leg.  Oh, Amateur Doctor, no amount of medical training could compare to your years of experience in telling disabled people what to do.  (And after all, you did once take a biology class in high school.  Never mind whether you passed it.)

4.      Busybody

Busybody uses similar methods to Sympathy Addict and Amateur Doctor, but is a little different.  There is nothing polite about the way Busybody openly gawks at you, like ze has never seen a disabled person before, and ze loudly and obnoxiously ask questions about your medical history.  Extremely personal questions are not off-limits.  (One seriously asked me how I had sex.)
To Busybody, disabled people are not people.  It may be that they don’t think of most people as real, or they just don’t think or care about how their actions affect other people.  But to Busybody, you are not a living, breathing person.  You are an object there for their entertainment.
Again, failure to respond properly to this person makes you a Bad Cripple ™.  Luckily as soon as Busybody’s questions are answered his or her attention span will wane and you’ll notice them staring off into the background and not even listening to you anymore.  You’ve served your purpose already.  They seriously won’t notice now if you slip away. 

5.      Detective

A specific type of Busybody.  Detective is determined, by whatever means necessary, to get to the bottom of why you’re in a wheelchair.  Hir interest wanes less quickly than a normal Busybody’s, and you will soon wish that wasn’t the case.
The problem with Detective is that immediately upon seeing you, ze has an inkling that you don’t really belong in that chair.  Ze will ask you rapid-fire questions that make you feel like you’re in an interrogation room.  Any time you run into Detective afterwards, you’ll see hir staring at you and waiting for you to slip up.  Because Detective doesn’t believe you’re a Real Disabled Person ™.  You’re just faking it for the attention, because clearly you love fighting with the oppressive architecture of every building, and clearly you love answering stupid questions asked by nosy people about your own body. 
The best part is when Detective thinks you’ve finally been caught in a lie.  If you can walk at all, or at least shift from the wheelchair to a chair or bench for more comfort while your group rests or eats or something, you’ll see Detective’s face light up in an Aha! moment.  Ze caught you, buster.  The Disability Police are coming to take you down to the station now, because you’re a liar and a faker.  The fact that you can move at all is proof that you have no disability.  (Detective, by the way, sees the world in black and white, so there’s no escaping this.  You’re either all disabled or not disabled at all.)
If Detective confronts you publicly about it, people who don’t know what conversation you had earlier with the detective may assume that you really are a faker.  I mean, Detective is right, you do have a wheelchair and you really aren’t in it now.  Even if these people don’t care about disability in any way under normal circumstances, suddenly you’re the worst person in the world, stealing priority seating, parking spots, and toilet stalls from Real Disabled People ™--even though they (and Detective, too) would gladly do the same any time it’s convenient. 
There’s really no escaping this one.  Detective wants too badly to prove ze is right about you, because although Detective doesn’t want to admit it, ze doesn’t think Real Disabled People ™ exist.  There are just scroungers like you who pretend to be disabled or exaggerate for their own personal gain (like the priority seating, parking spaces, and toilet stalls you really can’t use anyway because able-bodied people get to them first).  Even if you’re not on government assistance, Detective is convinced that you get special privileges for being disabled and wishes that those privileges were hirs.  We could pause to ponder the psyche of Detective and ask why this person is so suspicious and angry, but it really wouldn’t do any good.

6.      Conspiracy Theorist

Like Detective and Amateur Doctor, this one asks a lot of questions and is suspicious—but not usually of you.  Conspiracy Theorist, in addition to offering what they consider sage advice, will suggest that what you’re doing to treat your disability is bad for you in some way.  Although often well-meaning, this kind of person can become quickly exhausting and hard to converse with. 
Conspiracy Theorist Type A is usually kind. but full of bizarre and just-plan-wrong ideas.  Ze doesn’t realize what ze is doing is exasperating you.  Ze will, upon hearing you have had cortisone injections, advise you that doctors who suggest them are quacks and you should either take this supplement or just wait for the pain to stop, because your body makes your own cortisone.  Ze often thinks, even when presented strong medical evidence otherwise, that your disability has probably worsened because of what your doctors have done wrong.  Pain pills?  What are you thinking?  Those are poison.  What you need is some chamomile extract, or you need no medicine at all because you’re probably really normal anyway.  Unfortunately for you, Conspiracy Theorist A has no idea why this kind of conversation would upset you or how frustrating it is to hear again and again that you don’t need/shouldn’t take your medicine, and because ze hasn’t been purposely rude you are stuck in the (incredibly uncomfortable) conversation until they’re ready to move on.
Conspiracy Theorist Type B is aggressive and considers you to be just as guilty as your doctor.  Why?  Well, it’s just ridiculous that you didn’t get Educated and Enlightened like Conspiracy Theorist B, and frankly you kind of deserve to be in the horrible pain you’re probably in.  Hir message is basically the same as that of Conspiracy Theorist A, but everything is your fault, even if you know otherwise.  Conspiracy Theorist B may be belligerent enough that you don’t mind seeming rude by ending the conversation abruptly.  But since Conspiracy Theorist B is telling you The Truth, they will only get angrier as you ignore or argue with them.  Because now you’re not just an idiot who isn’t Enlightened, but you’re part of the problem and are probably a Big Pharma Shill.  But it’s okay.  You’re probably not really disabled anyway, you’re just faking for attention.  (It’s presumed that Real Disabled People ™ fawn over every word these people say.)
What’s the difference between the two Conspiracy Theorists?  You might be tempted to say there’s a huge difference, but there’s really not.  The two share the same philosophy and both are equally wrong.  Even when Conspiracy Theorist B is over-the-top, you can find Conspiracy Theorist A defending hir.  The only difference between the two is tactics—one is polite and makes you uncomfortable and one is rude and makes you uncomfortable.  In fact, they might be the same person having a good day or a bad day.
  
7.  Asshole

There is really no better term for this person, because Asshole refuses to even talk to you, except maybe in simpering tones and treating you like you're a baby.  Asshole probably assumes you're intellectually disabled (because all disabled people are probably intellectually disabled in Asshole's mind), and Asshole assumes that intellectually disabled people should be spoken to in baby talk.  
That by itself is positively revolting, but Asshole usually doesn't talk to you.  You're too stupid to give hir answers.  Asshole asks whoever is accompanying you, or whoever is standing nearest to you if you're alone, what's wrong with (him/her/it).  Asshole often continues addressing people around you no matter how many times you remind hir that you're there, you understand what ze's saying, and you don't appreciate hir attitude.  
Asshole is often combined with other types of people on this list, but the most distinguishing feature of Asshole is hir complete refusal to accept you as a human.  You will leave a conversation with Asshole feeling thoroughly humiliated and losing faith in humanity.  Good luck because there a surprising amount of Assholes out there. 

That’s it for now.  Let me know if you think of any more and we can do a continued list later.

9 comments:

  1. LOVED this. There is a lot of overlap between the experiences described here and the experiences of visibly transgender people, especially with the Curious Child. The Curious Child is a symptom of the real problem: lack of discourse about disability in our society. Kate Bornstein made a comment regarding gender in hir book "Gender Outlaw" back in the 90's: "When it comes to sex and gender, we're supposed to observe discreetly and draw our own conclusions." The same holds true for disability. And, "in this culture, gender attribution, like gender assignment, is phallocentric. That is, one is perceived as male until proven otherwise. According to a study done by Kessler and McKenna, one could extrapolate that it would take the presences of roughly four female cues to outweigh the presence of a single male cue." Also true with disability: everyone is presumed to be able-bodied and neurotypical until proven otherwise and it certainly takes more than one "disability cue" to convince most people that one is a Real Disabled Person ©.

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  2. @J.M., I'm glad you liked it. You've talked about Kate Bornstein before and I think I'm going to pick up that book. There is a lot of overlap between gender/sexuality issues and disability issues, like I never would have thought before I tried to study it.

    On another note, this post may seem overwhelmingly negative but using a wheelchair lets you see the best of humanity as well as the worst. I had a few pleasant conversations with strangers this weekend who didn't even mention my chair, much less ask why I was in it. There are enough good people out there that I can see there's a possibility of change. But sometimes it's easy to get discouraged with the overwhelming number of negative reactions.

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  3. I HAD to share this one. Absolutely HAD to. Thank you!

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  4. While I can understand how annoying it must be to get sympathy from everybody ALL THE TIME, I feel that you are being a bit abusively hard on good people who are simply exercising a little empathy towards you! No, they haven't been in wheelchairs, or have any disabling condition equal to what you must have gone through. But they may be just trying to "walk a mile in anothers shoes (or wheelchair)"and welcome you as much as they know how as a normal, fully capable person who just had some unfortunate incidences hit them! Maybe they find it difficult to understand how "adjusted" you are to your condition and are not providing the empathy you desire. But at least they're trying! And concerning public medical information, I prefer that people know my entire medical history up front. Then they will understand me better and relate to me likewise. Bu, of course, my disability is not so obvious, so I am always compelled to explain it to them! Or I get lots of unsolicited comments about it that you probably don't. So count your blessings. Because people see your disability, you have the luxury of getting more sympathy, empathy and compassion than you want. BUT I DON'T! So please send ME some of the sympathy that you don't want! I'd at least appreciate it!

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  5. I don't mind being in a wheelchair and the assumption that I want sympathy is a little insulting. I use the wheelchair because when my spine is being particularly cruel to me, it allows me to get out and see the world. Society knows it's rude to comment on other people's bodies. You're not supposed to tell someone they're fat or ugly or ask why they are fat or ugly. But with disability all normal rules of etiquette are abandoned, and disabled people are left with no bodily autonomy, no privacy, and incredibly rude comments from strangers who need to mind their own business. If I turned around and asked one of the people interrogating me, "Well, why do you have such ugly zits? Why do you dress like my grandma?" that would be pretty rude. In addition to making comments on my appearance they are, without even asking my name, wanting to know my medical history.

    Your assumption is also that my disability is clearly visible. It is not. I very rarely use my wheelchair, and when I am walking around people constantly bump into me, push past me, say rude things when I dare to use the disability seating on the Metrolink, and so on. In addition to my scoliosis-related issue that causes me to use a wheelchair, I also have autism (which is invisible, and believe me when I say I get a lot of shit for it) and I have otosclerosis, which causes me to have poor balance and a 20% hearing loss in my right ear. I'm not luckier than you, but I'm also not going to play the "who has a worse disability" contest you're trying to engage me in.

    I feel like your request that I send these rude stranger's sympathy your way is actually an attempt to mock me. Because how precisely would I do that? Would you like me to give them your phone number?

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  6. http://microaggressions.tumblr.com/post/3487515110 This was my post at Microaggressions, by the way. I was at the Field Museum in Chicago last weekend when this happened.

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  7. Wow, I'll take your word for it that I'm thankfully ignorant of some of these types of reactions to diabled individuals, because some of it sounds kinda out there!

    I'd like to gently say without disagreeing with anything really that I think (some) "Assholes" are people who genuinely fear their ignorance is going to cause them to say or do something inappropriate when presented with an unfamiliar situation. Certainly people should be able to treat any fellow human being with common decency and respect, but socially inept or awkward people may make some of these mistakes kinda innocently.

    Not to invalidate your frustration, sorry, I get real hippie-ish about cutting everybody some slack, haha. I honestly feel that some of these people mean no harm and just the fact that obviously being inappropriate can be downright annoying and painful, people avoid the situation.

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  8. I can sort of understand that might be the emotion behind some of the reactions in the last category. It's just that those are the most frustrating people because they seem to view you (or treat you, at least) as a non-person. When I'm around those people I feel like I'm being treated as subhuman or just an object. They will sometimes ignore me even if I try responding to their questions (the questions they usually would ask my parents). There have been cases where people have apologized or have started acting differently.

    I guess it's just frustrating that people's first assumption when they see me in a wheelchair is that I must not be very bright. Of course this indicates a stigma against people who are intellectually disabled too. I don't know whether to be more irritated that they assume I'm intellectually disabled or irritated that they would refuse to speak to intellectually disabled people too.

    I didn't feel like you invalidated my frustration at all. It does add another dimension to the discussion.

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  9. Katy, I have tried 3 times to reply to your reply to my comment about how I found your grouping how others see your disability as completely wrong! I wasn't! What I was trying to say is that, in the spirit if neurodiversity, if you don't want neurotypicals to judge you in pre-ordained (a.k.a. prejudiced) group judgements against autistic/ asperger (as I am asperger), you don't want to do the same group think mistake in return. Far from wanting you to "give them my number" and validate someone's abusive behavior; I just want to keep the "eye for an eye, and tooth for a tooth" on an individual basis. Being Asperger, PTSD, and Bi Polar, I have personally seen how easy it is to either get lumped, or lump, others into groups that we label unfairly. I have seen how easy it is to hear one thing differently than someone else, and end up being both mortally hurt, and having the same type of hurt on my (or some other well meaning person's) conscience! I believe that we need to mirror individual behavior with individual reply! And my mom, and I both, were feisty fighters when hurt! And so I am not at all shy about banding together in solidarity to anyone whose feelings have been hurt by ANYONE! That's what friends and loving, compassionate people do! Just be careful when you use this "nuclear" option, because you can hurt someone you don't intend to! By the way, I would never mock ANYONE who is being teased, bullied or harassed in any way! I would defend you to to death! Just let's keep a clear head about when this is necessary! I like you, and don't want to see you get hurt, or accidentally hurt someone in return to misperceived wrongdoing!

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