Tuesday, November 1, 2011

Pails to the Radio

This is a prose piece by Kate Gladstone for ASDay.

Pails to the Radio

I forget the man's name (if I ever learned it). He said he was a disability self-advocate with an autism spectrum condition. When he learned that I, too, am on the spectrum, he told me how he was repeatedly refused the legally guaranteed accommodations for his multiple disabilities, which range — he informed me — from autism to a visual disability requiring that everything he is given to read must be provided in large type.

Smiling like an Olympic medalist, he pulled from the pocket of his jeans some documentation he had prepared. He explained that he shows this paperwork to every government agency, organization, and business he deals with, either when he arrives or once they make life harder for him by not (for instance) providing him with large-print copies of forms and brochures.

The documentation — at least eight pages of closely spaced small type, detailing his disabilities and the accommodations he should receive for each — was faded, worn, grubby, and fragmenting at the edges. Several words and phrases were grimed beyond reading. Others had disappeared into holes worn by pants-pocket transport. (He said that he has been carrying his papers around for years, replacing them whenever they finally fall apart or when there is a change in the rules or in his requirements.)

The man with the eight grimy pages complained of irresponsible office staff who ignored his needs. After all, he had bothered to list his requirements, list the applicable laws, then print out new copies whenever the laws changed or his documents fell apart completely.

"Those bureaucrats are breaking the ADA law," he explained — "Most of them won't even pick this up and look at it when I tell them to. The rest take one look and either won't bother to unfold it, or claim they can't read it and say it's my job to put it into a usable format if I want action. Even the ones who do bother taking a look — well, sooner or later they say it would be prohibitively expensive in time and effort for them to meet some need I have. They talk about how the law lets them off the hook if the expense would be damaging."

"About them not looking at your documentation — why not carry it in something other than your pocket, so it can stay safe? Maybe get the next copy laminated? A laminated copy would not need to be replaced so frequently — and office staff would have less excuse to ignore it, because it would be legible."

"No, laminating would make it harder to carry around. Also, I shouldn't have to spend money on laminating because I'd have to do it again each time there was a change in my needs or a change in the laws."

In other words, he objected that it would be prohibitively expensive in terms of time and effort. That exempted him, he was sure — and he was equally sure that other people, if they could benefit him, should not be exempted.

"If it even was necessary to go to such trouble for me to just get my disability needs met"— the self-advocate continued — "then it would be something that should be done for me as an accommodation anyway. I should not have to be the one to make stuff happen."

"Lamination can be costly," I agreed — "When paperwork can't be laminated, another way to protect it is to put it in a zip-lock freezer-bag. That costs much less than laminating, and is simple to replace when needed."

"But you're still suggesting that I should handle my own needs at my own expense. It isn't my job to put out effort and expense for my needs — that's their job."

He cited his need for large print. "Any office with a copy machine can use the ENLARGE setting. I tell them to just take whatever they need me to read, and photocopy it on ENLARGE, and they complain it's too much time and trouble. Do they think it takes time to push buttons? Do they think it costs money to run a Xerox machine?"

I agreed that photocopying is easy (though not free) and wondered if he'd used alternatives when he couldn't get enlarged copies.

"Do you have a cell-phone?" I asked — "You can enlarge things on a cell-phone camera, too. If they won't give you large type, take a picture of whatever's in regular-sized type, and enlarge it. Lots of people do this when they have trouble reading fine print."

"Sure, I could do that, but why? Are you putting the onus on me to meet my own daily needs?"

"Yes," I told him.

That was the first time I'd heard self-care called an "onus" as though it was wrong and stigmatizing. (In my shock at hearing this implied — by a self-styled self-advocate — I failed to reach a better answer: that self-care and self-advocacy were not a burden created by me. The burden was on him already, whether I said so or not.)

"But that's not fair — " he sputtered — "to talk as if I'm the one who must take action to get my needs met! It's supposed to be the agencies making this happen: that's the law! Thinking I should make the effort is a denial of my civil rights!" He frowned, folded away his grimy self-advocacy aid, and shoved it into his pocket as he turned and left.

I recalled a quote from the biography of Viktor Belenko (ex-USSR fighter pilot): "If you want milk, take your pail to the radio." That saying had been common during the Stalin and Khrushchev years: the citizens' way of summing up the frequently announced new laws, new directives, new goals, new mandates, new ideological criteria that (the announcements claimed) meant fairness and abundance for everyone. While production and delivery systems erred, collapsed, or failed to materialize, radio broadcasts and the newspapers fed the public on announcement after government announcement of unprecedented bumper harvests, of supermarket shelves full to bursting, of clothing shops and hardware stores full of marvelous new items which were now to be had because citizens had a right to them.

On the radio, there was milk; at the store, there wasn't — and on the farm, the cow was gone: it had died, or been killed, in the famine concurrent with the previous wave of announcements. "If you want milk, take your pail to the radio."

That fellow with the eight pages of small type, I judge, has been taking his pail to the radio for some years. He resents the radio for not giving milk — and resents anyone who queries the flaws in his milking procedure.

He is not alone. As a person with disabilities, I notice when others with disabilities have been taught to "take their pails to the radio" and, by implication, to ignore other ways of getting what they need.

Take your pail to the radio and wait, because the radio guarantees you'll have milk. If the radio does not give milk — complete more paperwork and twist the dials harder. If someone suggests looking for a grocery store or a cow (or a neighbor with a full fridge, who might be persuaded to share if you fix the neighbor's computer) — condemn the suggester as an opponent of your civil rights.

We people with disabilities are constantly, officially reminded that we are "people first, and disabled second."

People exchange things they have for things they need or want. Often, it's money — just as often, it is at least minimal effort (if you want an enlarged picture, push the ENLARGE button). Other exchanges are less obvious but are still present. (Children, for instance, receive care because of the intangible but real rewards that they bring to their parents.)

But when it comes to people with disabilities ... too many of us have been taught that it is unnecessary, that it is even an "onus," to wonder what we might need to do, or might offer others, as part of gaining the goods or services that we want, that we need, and that we believe we have a right to. We've been taught to "milk the radio" (or to expect others to do it for us) — and wonder why we're thirsty.

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