June 2017


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Oct. 8th, 2016

I’ve been lately whomped by the disability binary and thinking about how much in disability comes down to narrow tolerances. I’m not even sure that’s the right term, but I can’t think of a better one.

The disability binary is the idea that people are either 100% disabled or 100% non-disabled, when in fact, most disabilities lie somewhere in between. There are people with no vision at all, and they deserve recognition and accessibility, of course. But many blind people have some usable vision and should be permitted to acknowledge and use that vision while also having access needs met. Many people who use wheelchairs can walk, sometimes, under certain circumstances. Autistic people do not magically become non-autistic when they talk, write, work or participate in a social activity.

“Can’t” is such a loaded term. First of all, the story sold to children that “there is no such word as can’t” is deeply harmful. Children, particularly children with disabilities, need to learn to recognize their limits, describe them accurately and advocate for their needs. Denial doesn’t magically create abilities.

But “can’t” as it relates to most disabilities is very hard. And this doesn’t seem understood by many people who should probably know better. I recently spent 90 minutes in training with a smartphone (a saga in itself) with a representative from our IT department and a rehabilitation engineer, someone whose job description boils down to creating technical access solutions for people. And she kept asking me, “can you do this?”

And in some cases I couldn’t and in some cases I could. Sort of. Being able to move my finger in a certain way on the screen, slowly and in ideal experimental conditions, doesn’t mean that that same finger movement is going to be a reliable way for me to interface with a device in the wild, particularly at speed. And being able to answer the phone while it is still ringing seems to fall into the minimal requirements of something to be useful as a phone. So yes, I can do that, in that my finger can make the movement. No, I can’t do it quickly enough, reliably enough for it to be a meaningful ability. Which answer is the lie?

I can write, also. Comes in handy for signing my name and scrawling Post-Its for co-workers. Doesn’t mean I can write an essay.

I’m reminded a bit of the question asked by the youngest person present at a Seder, “Why is it that other nights we eat leavened OR unleavened bread, but tonight only unleavened bread?”

There are so many situations where it isn’t that I “can’t” do something at all, but I am reduced to one option, or markedly fewer options. I can sit well in only a subset of chairs. I can write reasonably with only a certain kind of pen. I can tap on the phone only if it is in a certain position and my hand is positioned in a certain way. My tolerances for success are narrower.

And so it was that I went to a professional conference in an unfamiliar city. I did not request any specific accommodations because there wasn’t anything in particular I could anticipate needing. Looking back in retrospect, I still can’t figure out if there was anything I could have requested that would have helped in any way.

The conference hotel was in a beautiful location in an historic, picturesque setting. It was so historic and so picturesque that the nearest streets were cobblestoned. People without mobility impairments could manage the cobblestones without a thought. Some people with more significant impairment than I have would not have been able to navigate at all. I was hampered and grumpy but not immobilized.

The first crosswalk had a lovely traffic light. When you pressed the button for the crosswalk, it not only spoke when it was safe to cross but even read the second countdown alive. I always appreciate this verbal confirmation of the visual signal, even though I am able to see the visual signal, due to my slower visual processing. The second crosswalk had no light at all. I stood for 5 minutes trying to analyze the traffic pattern as cars came around a circle, before I was able to cross. The next street was the same, and the next.

I made it to CVS to buy milk and shoelaces and I made it to Subway to buy dinner and then beat a shaken retreat back to the hotel. At least I was able to turn off the air conditioning in my room, I had internet access and the refrigerator I requested for my insulin was actually in the room.

The first two days of the conference, I participated in several workshops. Some sessions were on the first floor and some on the second floor. The hotel had three elevators, but only one was working. There were also up and down escalators between the first and second floors but one was not working. There were also stairs between the first and second floors. One elevator was not enough to service the needs of the entire hotel including getting people between the first and second floors efficiently. So I started spending lunch on the second floor, plugging my computer into a nearby outlet, rather than going back up to my hotel room or networking on the first floor where there were people but not outlets.

And it was just one thing like that after another. Little things. Things that worked, but weren’t great, that took an emotional toll, which used rather than saved spoons. The reception which offered cheeses, vegetables and two pasta dishes, one with pork and one with lobster, which wasn’t a disability thing for me but the lack of a vegetarian dish with actual substance didn’t exactly scream “inclusion” either. The new “ap” that I couldn’t use, so I had to go back and forth to the reception desk to find out where events would be held.

The whole time I had the sense of opulence and prosperity and exclusion. I couldn’t help thinking about two other conferences I have attended, both cobbled together on barebones budgets, one so barebones that lunch was take-out. One offered multiple seating options, a clear schedule and a firm statement that participants were not to touch one another without permission. The other discussed accessible sidewalks and transportation as part of the planning process. Of course, people with disabilities were central (in one case, solely involved) in the organizing process.

This larger, glitzy, better funded conference understands the idea of specific accommodation for specific stated needs. There’s a law for that. They give you a chance, on your application, to request these accommodations. They don’t understand that people with disabilities may need something other than specific individual accommodation to be truly included. We often need a wider range of options, from transportation to seating to dining. That’s from lived experience. “No cobblestones” isn’t a matter of accommodation. “I need the schedule in hardprint rather than on an ap” can’t be requested if they don’t tell you in advance about the ap.

Did I mention that all the professionals at this conference work to provide care for children with disabilities?

I have attended this conference four times, and have been knocked over twice by other disability professionals, one of whom tapped me on the shoulder and another of whom grabbed my arm.

Star Ford has a wonderful piece on “Deep Accommodation, or the idea that we can change society so that more people are included, without requiring specific accommodations.

Universal design is another, related concept. If you have both a (working) elevator and stairs readily available, then almost everyone can get to the second floor without additional consideration. If you offer schedules in multiple formats, an array of seating options,

A huge part of this is getting away from the binary. We need to shift the question from “can you do this?” to “how can we ensure the most people can participate optimally?”

A huge part of this is offering more options, not as special accommodations but as a matter of course.

A huge part of this is ensuring people with disabilities are involved in the planning from the onset. It’s not a matter of them remembering to accommodate us. It’s a matter of us being part of them.
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