Normal Is Overrated

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.)