Normal Is Overrated

[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.

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…on Autism Awareness Day, my brain is just too exhausted from a day at work to really post anything substantial about autism here. Go figure.

I’ll try to get something up at some point this week; after all, although Autism Awareness Day is nearly over, there’s a whole 28 days still left in Autism Awareness Month.

Edited to add: If you can handle more snark and irreverence than I usually post here, feel free to check out the ‘autism’ tag on my Tumblr blog, where I’ve been reblogging and commenting on stuff for a good part of the day. Less effort than writing an actual substantial post, after all…

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.

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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 Blogging Against Disablism Day 2011.]

The following list is based entirely on my own experiences with several recent self-advocacy opportunities that opened themselves up to me. Despite the fact that many of these events may sound like something out of an absurdist comedy, all of the below occurrences are things that actually happened to me in trying to participate in one conference or another.

How Not To Invite Self-Advocates To Your Disability Conference

• Require physical attendance at the conference. Do not provide any way for a self-advocate to contribute via the internet, despite the fact that many autistic people find conferences to be sensory overload, and despite the fact that many people with disabilities may not be able to afford or access transportation.

• Mention the date of the conference in only two e-mails— one sent a month before the conference, when attendees still aren’t sure whether they’ll even be attending, and one sent just two days before it. It’s not as if people with neurological disabilities have bad memories.

• When asked about funding for transportation, give a vague non-answer and let that be all for several weeks. When asked for further details, wait a bit longer, then give a still-inconclusive answer which does not clarify whether reimbursement will occur before or after the conference. People with disabilities can all afford a round-trip bus ride across the state and/or an overnight hotel stay, right?

• When a potential attendee asks for directions via bus, suggest using a bus system that does not even cover that suburb.

• Hold all communication with the team via conference telephone calls, with no provision for live captioning and no alternative meetings via text chat. When asked about this, stumble and suggest calling via relay.

  • Continue to suggest that self-advocates contact you via phone for further information even when they have already explained multiple times that they cannot hear well over the phone.

  • When a self-advocate does call in via relay, talk so fast that the relay operators can’t keep up, never identify who’s saying what, and never give the ‘go ahead’ for the relay-using self-advocate to speak his part. Continue talking even when the relay operator says to hold on because another operator has to take his place.

  • Ignore the self-advocate’s other suggestions entirely, such as holding the meeting via Skype (which has better sound quality, avoiding the muffling from regular phone lines) or relaying the important points live via instant messaging.

  • Do all of these things despite the fact that the relay-using caller has explained all of these issues involved with relay via e-mail prior to the call.

  • After the first one goes so badly, and a self-advocate has told you as much, continue to hold meetings via conference call with no alternatives.

• As another alternative, provide a screencasting feature that allows viewers to see the slideshow and its notes. Make sure it only supports Windows, with dodgy support for Linux and none for Mac OS. Don’t actually test it to see whether it even works in Windows as claimed.

• Promise to send summaries/minutes of the conferences within several days of the call, to make up for the failure of accessibility during the call. Never actually send these minutes.

• Assume that all self-advocates who have been recommended by a particular organization are formally affiliated with that organization in a leadership role, and repeatedly ask them unanswerable questions about that role.

  • Assume that every national or international disability organization with members in your state has a branch within your state.

• Assume that a developmentally disabled person has any sort of remotely comprehensive idea about the extent of disability-related organizations in their state as a whole, and especially about organizational resources such as funding and meeting spaces.

  • Assume that a self-advocate who has lived his entire life downstate has any clue about organizations and resources that are nearly all upstate, especially when inter-city transportation is so lacking.

• Ask an autistic person vague questions like “What has worked in your state?” and “What are the challenges in your state?” with no further context whatsoever.

  • When a self-advocate e-mails to ask for clarification of these questions, be equally vague in your reply.

• And, after a self-advocate has gone through this entire rigmarole, proudly state in an e-mail to all attendees that “if allies are to be part of the movement, they need to be held accountable. Information must be accessible.” (Actual quote, folks. I couldn’t make this up if I tried.)

In case you’ve been wondering where I’ve been for the whole of Autism Awareness Month… with working on my dissertation and various other things I’ve been preoccupied with, I haven’t had much time to write substantive blog posts this month. (However, I’m still planning something for tomorrow– the end of Autism Awareness Month, and Blogging Against Disablism Day. A nice coincidence, if there ever was one!)

However, this doesn’t mean I haven’t been writing occasional musings elsewhere. Check out my Twitter feed and my Tumblr posts tagged “autism” for my thoughts that haven’t been substantial enough to expand into full-length blog posts.

Today is the first of April— April Fools’ Day. It’s also the start of Autism Awareness Month. An ironic combination, since I know plenty of autistic people who can’t stand April Fools pranks whatsoever, and since so many on the spectrum have trouble with untruths… but I digress.

Something I’ve noticed, as I keep an eye on Twitter searches and Google Reader, is that what counts for autism awareness is… rather shallow, honestly. One particular ‘awareness’ campaign I’ve seen referenced a lot lately involves putting blue lightbulbs in one’s outside lights, and wearing blue clothing. If I may ask… how does this even indicate that autism exists to someone who doesn’t know about it, much less indicate what autism actually is?

And that’s another thing. Many of these awareness-raising efforts that I’m finding describe more about the campaign itself than about, well, what they’re raising awareness for. At least one site I’ve seen people linking to describes the awareness campaign in great detail on the front page, but hides the actual description of autism several links deep, below the fold.

Surely I can’t be the only one who sees this as a problem?

Honestly, I think we need to move beyond mere awareness. With all the public service announcements and such that I’ve seen, I’d venture to say lots of people are aware that there’s some sort of condition known as autism, that it exists, and that a lot of people have it. But as someone who actually is on the autistic spectrum, I’ve also noticed that this awareness generally doesn’t make people any more clued in about autism.

What we need is understanding of autism—which automatically encompasses awareness as well; if you understand something, after all, you’re surely aware of it.

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So today was the Communication Shutdown for Autism— a fundraiser in which people voluntarily chose to log off of Twitter and Facebook for a day to raise funds for autism charity and promote autism awareness.

The thing is, to me, this seemed rather counterintuitive. The whole thing was supposed to be a simulation of the communication challenges faced by autistics— but they didn’t very well mimic the issues that I had. In fact, textual communication via online social networks is easiest for me— when I first logged onto the internet in 1996 (wow, I feel old), it was so freeing that I could communicate with people halfway around the world without having to deal with any of that pesky deciphering of spoken language! A much better simulation, in my opinion, would’ve been to only socialize online, and not use speech for the entire day instead.

So instead of that event, I decided to join a counter-event proposed by autistic blogger Corina Becker: Autistics Speaking Day, in which autistics and allies were to flood social networks rather than abstaining from them.

Thus, I’ve been tweeting all day on my Twitter feed (which I’ll still continue to post autism-related stuff, incidentally). And I decided I’d post something here as well.

I decided, given that this is all about autism awareness, why not provide some counterexamples to prevalent stereotypes and myths about autism? I already did a bit of this last April on DailyKos, but since then, I’ve thought of five more myths that needed debunking.

So here we go…

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Don’t really have enough thoughts yet to make this into a full-fledged post, but I just had to share the link here. Blogger/author Stephanie Allen Crist (who’s commented here before, in fact!) just posted a wonderful blog post titled Offending Autism Speaks about why she’s boycotting a fiction anthology that’s sponsored by Autism Speaks. Do read it; I think it lays out the issues with that organization even better than I’ve done here.

Today is Blogging Against Disablism Day. And for today, I wanted to write about a sort of ableism (as we call it here in North America) that’s rather subtle and largely unconscious, but no less problematic.

An important concept in social justice circles is the idea of privilege. For those unacquainted with the concept, perhaps the easiest way to describe it is that by being born into a certain group (race, gender, economic class, etc.), you’ve automatically, even unconsciously, been given an advantage in certain matters as a part of that group. This, of course, even applies to disability: if you’re not disabled, you’re automatically granted advantages that many disabled people will have to work for at best, or may never attain at worst.

I’d write about neurotypical privilege here, since that’s the most obvious case that’d be relevant to my own disabilities, but Bev from Square 8 has already created a neurotypical privilege checklist that’s so good, I don’t think I could ever manage to outdo it. (And besides, I contributed a couple items to it myself!)

However, along with Asperger’s syndrome, I also have auditory processing disorder. It affects pretty much every act of spoken communication I participate in, so it’s not something that can be easily ignored. And I’ve noticed that many people don’t even consider how certain activities can be discriminatory to those of us with abnormal hearing or auditory processing.

I wish I could provide an outright hearing privilege checklist, but that’d be problematic given that I have at least some privilege in that respect myself. My hearing itself is OK; I’m overly sensitive to noises, and I have perfect pitch that’s a blessing for solving the Selenitic Age in Myst but a curse when I’m asked to play on a piano that’s horribly out of tune. 😛 At the same time, because of my auditory processing disorder, I do share many of the same difficulties understanding speech that someone who’s deaf or hard of hearing would have. Nonetheless, it’d be best to refer to this as an auditory processing privilege checklist, not a hearing one.

So, without further ado:

The Normal Auditory Processing Privilege Checklist

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