As many readers may know from my other blog— and others will quickly learn— I’m 24 years old, yet do not drive a car.
Simply put, I don’t trust my perception of what’s going on around me, even after years of practicing.
And despite the fact that most people seem to think I’m exaggerating, there’s good reason for this distrust of my perceptions.
[This is my admittedly belated post for Blogging Against Disablism Day 2012. Be sure to check out the other posts linked in the master post as well—there’s some great stuff there!]
I’ve noticed quite often lately that when people think about accessibility, it’s often in one particular form: making things usable for people who use wheelchairs and other mobility devices. Now, of course, that’s not a bad thing; any effort toward making things accessible to anyone with disabilities, assuming it’s actually done well, is a much needed improvement.
But as important as this is, it’s not the be-all and end-all of accessibility. And yet, so often, I see people acting as if just making things wheelchair-accessible is enough to be considered accessible. I’ve even seen a number of disability-specific businesses and event planners who, although they took wheelchair access into account, still failed to offer basic accommodations that would’ve benefited actual people with disabilities.
Remember my BADD post from last year, about the disability advocacy conference runners who failed to actually make the planning process accessible to real people with disabilities? The sorts of things I described there are not rare. They’re…all too common, actually.
It’s when this isn’t the case—when people really do consider more than just a single facet of accessibility—that I’m truly surprised. And I can think of a couple of recent experiences that have demonstrated this to me.
This year, I was too busy and stressed to post anything on Autistics Speaking Day, despite desperately wanting to.
But there’s a reason I was too busy: I had just begun my first week of work at a full-time job since leaving graduate school. Yes, even in spite of all the employment challenges I’ve mentioned in the past, I still managed to find work in this economy.
And it’s not just any job; it’s a chance to work on something I’m quite interested in. Though my life-long dream of being a contestant on Jeopardy! still remains unfulfilled, I’ve managed to do something that you could say is functionally equivalent.
I feel safe disclosing it at this point, now that I’ve been on the job for a week, so I’ll go ahead and state it: I’m now a research engineer at Nuance Communications, working on the DeepQA project—the software powering the Watson supercomputer that defeated the two reigning Jeopardy! champs—as part of a joint research agreement between Nuance and IBM. (As an aside, to cover all the legal bases: everything I discuss below is my own personal opinion, and I’m not speaking as a representative of either Nuance or IBM.)
And this opportunity wouldn’t have been available without plenty of reasonable accommodation—which is exactly what I wanted to write about for Autistics Speaking Day.
A confession to make: I still have trouble with a lot of basic daily living activities.
No, it’s not that I can’t do them. I’ve proven without a doubt that I can, having lived in my own apartment for several years. It’s just that they’re significantly more stressful and overwhelming than they are for your average neurotypical person.
Take getting groceries, for instance. For most people, the steps are basically: Drive to the grocery store. Take as long as you need to get groceries. Get them. Cart them back out to the car. Drive home, and get them back out.
For me, it’s more like: Take sufficient downtime to make sure that I can process things when I actually get to the grocery store. Wait for bus. Keep waiting, because it’s invariably running late. Catch bus when it arrives. Hurry to get groceries before the next bus arrives, as there’s only one per hour, and the routes in either direction are staggered. Also hurry because the fluorescent lights and noises are overloading. Buy the groceries, making sure not to buy more than you can carry in one trip. Keep waiting at the bus stop, because it’s invariably running late in that direction as well. Ride the bus back, then cross the street back to the apartment with a bunch of heavy bags in tow.
Is it any surprise I need even more downtime after all that?
Similar issues hold for things like cleaning sinks, between the smell of the cleaning solution and tactile issues (I’ve found that I can’t clean at all without wearing gloves, and even then, stuff often ends up getting under the gloves). Or cooking—I need so much downtime to prepare, and need such a clear head to actually do the cooking, that after a busy day, I’d rather just microwave, eat something raw, or go out to eat. And let’s not even get started on laundry—washing and drying isn’t much of an issue, but I usually just leave my clothes wrinkly because ironing is so stressful, especially with my coordination problems.
In short: because it takes me so long to handle these daily living activities, and because they’re so stressful as to require more downtime, I end up getting less actual work done as a result. And my life would be greatly eased by services or accommodations to make these activities less stressful.
But that’s exactly the problem: that I can do these things. Assuming I even could get services to help out with such issues (which is already in question, since I’m over 21, “high-functioning”, and have an above-average IQ—but that’s something for another blog post entirely), the request might still be denied, since I’m obviously able to do the things I’m asking for help for. Completely ignoring, of course, how much more difficult they are for me than for an average non-autistic person—clearly I can do them, so I don’t need even the slightest bit of help, right?
(Oh, yeah, and in further irony, accessing a lot of these support services in the first place requires making a phone call. Yeah, immediate barrier right there for some people with disabilities, myself included!)
This is closely related to what several bloggers observed on Blogging Against Disablism Day, including Jennifer Fitz and Anne at The Trick Is To Keep Reading. The whole support system is designed with the assumption that because you can do something, you’re consistently able to do it, and it’s no harder for you than for anyone else who can do it. And if you reveal that you need support for something, but it’s later discovered that you can do it—no matter what difficulty is involved!—you’ll end up being called a faker.
(I actually have a bit of personal experience with this phenomenon myself. I can’t hear on the phone very well, but can communicate face-to-face without much issue because the sound is clearer and because I can fall back on reading lips. Suffice it to say: people get very confused when someone who called them via TTY relay can carry on a face-to-face conversation perfectly fine.)
And so, despite the fact that such services would make my life significantly easier and less stressful? I’m left to basically handle these things on my own. Yes, I can get help from friends and family—but that hardly solves the issue when they may not always be around to help. This, too, is an issue I’ve encountered many times; on several occasions, I’ve made plans with a friend to run errands together, which ended up not coming to fruition due to illness or schedule conflicts. (And of course, by the time I’ve found this out, there are often no more buses I can catch to run those errands.)
(This is my post for Disability Blog Carnival #63: Relationships. See also the companion post from my girlfriend.)
Greetings. I’m Cody, I’m autistic, I have a girlfriend, and I love her.
Yeah. I hear you saying it right now. There are autistics who actually want friendships? Autistics can actually feel love for others? Autistics can be in romantic relationships?
And to answer those questions: Yes, yes, and oh so definitely yes.
On one hand, it amazes me that these tropes continue to persist in the face of all manner of evidence to the contrary. And yet, on the other hand, it really shouldn’t amaze me.
(This is my post for Disability Blog Carnival 59: Disability and Work.)
I’ve never applied for a job in the traditional manner.
Sure, I’ve done some work for my father’s office, and I’ve done some freelance work for organizations owned by his friends and associates. But this has all been through connections, through friends, family, and friends of family; I’ve never actively sought out a job on my own in the traditional way.
But it’s not that I don’t want to— in fact, I would absolutely love to find a job that suits me well. It’s just that the process is… a difficult one for people with the issues I have, to say the least.
So it’s Blogging Against Disablism Day once again. I’d been thinking for the past couple days about what precisely I want to blog about today… and then it hit me yesterday.
Assumptions.
People tend to make assumptions of a person’s abilities and general nature based on that person’s appearance. But sometimes these assumptions turn out to be incorrect. Some people adjust their personal stereotypes to adjust for their errors; others cling to their assumptions and classify these cases as exceptions to the rule.
You’re all probably familiar with this sort of dynamic as it applies to such matters as race and gender… but yes, it applies to disability as well. And in fact, I’ve seen it happen in two different directions in just my own experience.
Well, it’s going to be yet another boring weekend. At least I’ve got a good bit of entertainment available to me here in the apartment— which is a good thing, since I won’t be venturing all that far from it.
You see, I don’t have a car. I tried learning to drive… for about eight years, and never made much progress. It’s as if my brain just isn’t wired for spatial perception or visual discrimination rapid enough to be of use in driving— and my somewhat spacey, easily distracted nature doesn’t help matters any.
So I have to make do with alternatives. (more…)
I’ve been thinking about the Tropic Thunder controversy that’s been brewing in the disability blogosphere. (Go follow that link if you haven’t already heard about this; I don’t see a need to reiterate the background story when it’s already been covered on plenty of other blogs.)
And as I thought about it, I noticed something odd. It wasn’t the oft-quoted dialogue about mental retardation that bothered me; sure, it’s offensive, but part of the whole point of the movie is that the characters are painfully insensitive. (I mean, come on, Downey’s character performs in blackface. You can’t say the characters are pinnacles of understanding.) The portrayal of “Simple Jack” in the film-within-a-film is a bit more unsettling, yet even that wouldn’t offend me if it were framed in a suitably satirical context pointing out just how chock full of stereotypes it was.
No, what’s nagging at me goes further than mere dialogue and character portrayals; it’s a matter of unfortunate implications. Now, to be fair, it could very well be that this is dealt with in a more balanced manner in the movie as a whole, so I’m withholding any final judgment for the time being; even still, the choices of what scenes were chosen for the trailers alone demonstrate a… rather unsettling bias.
So tomorrow’s the big Walk for Autism in Atlanta.
And this Georgian isn’t going.
I’ve already written in the past about Autism Speaks, the organization sponsoring this walk, in a good bit of depth, but I’ll just reiterate things in a shorter fashion to drive the point home:
I refuse to support an organization whose idea of treatment isn’t to try to find a way for autistics to function in a hostile world, but rather to “ultimately eradicate autism for the sake of future generations”, in the words of its founder.
I refuse to support an organization which talks all the time about the peril of autistic children, while seeming to forget about us autistic adults, or at most, giving us only a passing mention.
I refuse to support an organization which falsely appears to speak for autistics, when not a single person on the autistic spectrum can be found amongst its board of directors or anywhere else in its leadership.
I refuse to support an organization with a vice president who openly admits to having wanted to drive off a bridge with her autistic daughter in frustration, in front of that very daughter, while cameras are running to record the moment for posterity in a fund-raising documentary.
And in this repudiation, I’m not claiming autistics don’t need support, services, or any other help. Even though I’m on the higher-functioning end of the autism spectrum, I’ve had many moments where I could easily have used a helping hand…or several. I, too, go into meltdowns when I’m feeling stressed or overloaded; I, too, would very much benefit from accommodations that allowed me to actually meet halfway, rather than exerting even more effort than most people dream of just to maintain an appearance of normality.
But this help should be provided with respect. Respect for who we are, for the fact that autism is a pervasive developmental disorder and not just something that can be taken out of us like a tumor. Respect for the fact that our brains work differently, and that methods of teaching which may work perfectly well for a typical child (or adult!) may not work at all for us. Respect for the fact that we may still be aware of what’s going on around us, what’s being said about us, even when it doesn’t look like we understand a word.
Strangely enough, organizations for other neurological disorders—disorders with even more of a popular stigma than autism—get it. See, for instance, Joel Smith’s comparison of Autism Speaks’ rhetoric with that of the National Down Syndrome Society for just one example.
But unfortunately, even with plenty of protest by autistics all around the country, the world, and the Internet, Autism Speaks just doesn’t seem to grasp this idea.
And that is why I cannot honestly support them.
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