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

Now Katy doesn't want to live in Smithton anymore.
Showing posts with label accessibility. Show all posts
Showing posts with label accessibility. Show all posts

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.

Wednesday, October 20, 2010

On getting my ass moving...

I keep not posting and I really don't know why, although now that I think about it I guess I'm afraid no one's listening.  I have a lot of connections with other autistic bloggers and so on but I haven't exactly gone out and invited everyone to start reading the blog.  I'm kind of terrified of the idea that I could post something about people from my personal life and forget that it may offend them.  Because this is the first time I've had an idea of myself putting things out in public instead of keeping them in private conversations.  Oh, well, I'll cross that bridge when I come to it.

So a sorority at my school was raising money for Autism Speaks.  I was going to lunch with a friend from class and I turned and saw one of the girls waving a sign with the little puzzle pieces on them.  I was so angry.  I was just shaking with anger and I could barely think straight.  I went up to the table and asked them if they supported eugenics and told them they might consider finding a new organization.  Actually that makes me sound too well-organized.  I was kind of in mid-meltdown (and meltdowns don't leave me with much room for effective communication), so I wound up stuttering out something that made me sound a little insane and then running up the escalator.  I couldn't concentrate in class; I was shaking still an hour later.  So I stopped trying to take notes on my computer (which I sometimes use instead of notebooks for the sake of organizatino) and instead typed an e-mail to someone in my school about it, hoping it would get someone responding to me. 

I was very surprised when I got a meeting out of it with the advisor for Greek Life and someone at the Student Life center.  I organized a bunch of  data on why Autism Speaks is bad (if you don't know about this I think www.notautismspeaks.tk sums it up pretty well and a Google search can get you the info as well.)  So I managed to convince the boyfriend to take off work to come with me because I was terrified and I am not good at that sort of thing, and he works for the government so he is used to the kind of bullshit I expected to encounter.

They were surprisingly polite and seemed pretty sympathetic to me.  I was surprisingly conversational, although I'm sure they weren't used to someone being that eloquent while staring firmly at the table for an hour.  I tried very hard to fake eye contact and I just couldn't.  It always sounds like it will be easier when I'm thinking about it than it is when I try to do it.  They told me they would talk to the sorority but they couldn't really do anything about what student organizations raised money for.  Basically, they could raise money for the KKK and the school can't do anything about it.  The important thing is that they actually listened to me for an hour and took the information I gave them, along with a list of other organizations that would be more suitable to raise money for if the sorority is really interested in promoting supportive services for autistic people.

I also got information on how to form a student group for disability rights.  It's entirely probable that next time the sorority or anyone else tries to raise money for Autism Speaks, I may have a few people willing to picket them with me. 

I recently got an e-mail from Disability Access Services from my school.  For a little background, I went to DAS as a freshman asking for them to help with things related to my hearing loss and my autism.  They were kind of the opposite of help and we couldn't figure out a way to make them do what they were supposed to.  Although they did tell me I was to meet with one of them once a month for reasons I can't exactly figure out.  Went to two meetings, but the second one (with the coordinator of that office) happened while I was sick with a mild flu.  I asked her awkwardly at the end of the meeting if she knew how I could see the campus clinic next door.  She seemed alarmed and took me there herself, and told the girl at the front desk I needed a psychiatrist and it was an emergency.  I had to explain in front of everyone that I was not in fact suicidal and just needed someone to check up on my respiratory illness.  I left without seeing a doctor, feeling both embarrassed and weirded out.

Then I broke my foot badly.  I had an avulsion fracture of the 5th metatarsal that required two surgeries to fix.  I am too uncoordinated to use crutches so I was in a wheelchair for two months.  I wasn't too upset because my brother had brittle bones when we were growing up and I'd used his wheelchair before; they don't actually suck as much as my friends seem to think they do.  But my school has a lot of hills so my father had to take me to school every day.  One building I had three classes in was an older building that only had one door that was accessible for a wheelchair user.  When I tried to get into it for the first time, I found that it was locked.  There was a card slot next to it, so I tried using my student ID but it wouldn't work.  My father had to go around into the building and open the door for me from the other side.  I contacted DAS to figure out how I would get in the building.  They said they had to put something on my student ID card to make it work in the door.  I asked if they would do that for me, and they said no.

DAS has never done anything to help me, even though I have only asked them for the simplest, least time-consuming things possible.  So I'm not a big fan of them.  And today they sent me an e-mail letting me know about their exciting news.  Seems they have a new office space (yay for them) and the old coordinator who gave me so much trouble has retired and a new coordinator started in her place.  I wrote him an e-mail detailing my experience with DAS.  I then asked him if I could continue to expect the same level of services s before or if they would actually start helping the university's disabled students, which is what they are paid to do.  Haven't gotten a response yet, but I felt awesome after sending  the e-mail.  I just sent it today, so I figure I'll wait a week for a response and then decide what to do.

In other news, October 1st was my one-year anniversary with Sean, and he proposed to me.  He took me out to eat and when we were standing outside the restaurant looking at the sunset, he pointed to a nearly jewelry store and told me I had to go with him there because he didn't know my ring size.  I couldn't talk for a minute and just made excited squeaking sounds while I hugged him, and then I said yes, even though he hadn't asked the specific question. 

So we went inside and explained to the people we were looking for an engagement ring but I don't like diamonds (not just personal preference; the idea of blood diamonds makes me queasy).  So we wound up doing a custom sapphire ring with a light blue stone.  It was awesome.  Now I'm doing wedding planning.  So between this, school, and everything else, I have suddenly become a very busy person.  But I like constantly having projects so I suppose that's all good.