Legal Disability: The Real Issue
In the United States, we tend to understand disability to mean "inability" -- and to understand that inability as innate. Therefore, many of us say "person with a disability" to try to convey that a person is unable to do something, but that this inability doesn't define the entire person.
But we ignore a whole history of the word. Moreover, we ignore the way that this other understanding has been used by disabled people in the United States and elsewhere, and I think we do so to our detriment.
Disability can also mean an inability caused by outside forces -- and this is how I will use it in this essay. The social model of disability is founded on a distinction between individual impairment and social disability. Using this vocabulary, deafness is impairment; the collection of ways that deaf people are disadvantaged by a society that takes for granted that all its members can hear a given range of sounds is disability. The social model is built on a denial that impairment causes, or justifies, disability.
There was a time, for example, when women were disabled as citizens -- made unable to function as full citizens -- by laws regulating such things as who could vote or own property. Some feminists assert that women are still disabled in the workplace by expectations, for example, that childcare responsibilities will never conflict with what employers want from their workers.
This is not the way disability is used in the Americans with Disabilities Act, of course; but I think it is a valuable tradition. At a minimum we need a vocabulary to make the distinction that those people working in the social model tradition draw between individual human differences and the patterns of advantage and disadvantage that are blamed on those differences. (The social model originated in the United Kingdom. Struggling for a vocabulary that works in the United States drives home the point, attributed to various writers including Wilde and Shaw, that America and Britain are two nations divided by a common language.)
The ADA identifies someone as a person with a disability if they are limited in one or more major life functions by an impairment -- but this raises the question of why we seek social solutions, such as access, to the individual problem of impairment.
Using this social model interpretation of disability, we can say that many people are "disabled" by judges ruling in commitment and guardianship hearings, and by physical and social environments that are made for some, but not all, people.
Much of the disability rights movement is about challenging practices that disable people with impairments. Nora Groce's Everyone Here Spoke Sign Language, for example, is often cited as evidence that deaf people need not be disabled: a society in which hearing isn't necessary can exist.
What prosecutor Kevin Bramble is trying to do in Grand Rapids is to get a judge of the Family Division of the 17th Circuit Court to disable a woman as a parent of children. He is trying to remove from her the abilities that our society grants parents of children as a matter of course: the ability to make decisions about how her kids will be raised. There are some decisions no parent is allowed to make; but the decision to refuse an elective surgical procedure that carries with it risk is not one of them.
Judge Kathleen Feeney seems willing to consider going along with Mr. Bramble.
Okay, but aren't there some people...?
I've just read People First of Oregon's People First Chapter Handbook 2002. It's not long.
"Power is the ability to get things done," write the authors, and the People First Chapter Handbook is about developing power.
The last how-to book I read on organizing was bigger and more detailed, and it spent a greater portion of its pages on developing the organization's power within the larger community. It's a book to keep going back to as I come up with specific questions regarding details.
This one is more oriented to developing the organization's power by developing its members' power. The writers seem to trust that as the members become experienced in identifying problems and working toward solutions, power within the larger community will come naturally. It uses broader strokes, and the outline is much more clear. The details the writers do give, though, are well chosen.
Developing group members' power is a slow process -- but then the self-advocacy movement represents many people who have been denied the most basic control over their lives. It represents people who are often dismissed as too hard to teach.
And people who have been disabled in so many ways as have the constituents of the self-advocacy movement are rarely prepared for sudden enablement.
Nondisabled children spend 18 years preparing to handle the full range of abilities our legal system gives them (21 for those abilities involving alcohol). We tend to assume a similar period of preparation for those abilities that are handed over in a less precise fashion.
The preparation is so "natural" as to be all but invisible to most of us. Nonetheless, it's hardly surprising that people who've been largely excluded from two decades of training that most Americans take for granted cannot reverse the consequences of that exclusion in a week or two.
The possibility that nondisabled professionals, parents, and chapter support people -- or more articulate and experienced disabled people -- will end up controlling a self-advocacy group rather than supporting the membership in controlling it is one that's taken very seriously here. Ignorance is respected. Everyone has things they don't know, the writers note. Everyone deserves a chance to learn.
So there are clear instructions for making a flyer to announce your meetings, and there are also instructions for holding an election in which people who do not read or write can cast secret ballots. There is advice about how to do things, but there is also an acknowledgment that different groups will do things differently -- and many of the choices chapters need to make are laid out.
People First Chapter Handbook 2002 is, as a result, a very good guide to the process of setting up a self-advocacy group. It is also a good introduction to some of the issues involved in ensuring that people from the developmental disabilities community have a chance for full participation in cross-disability groups.
You can download it in pdf format at http://www.open.org/~people1/articles/pfhandbook.pdf
You can email People First of Oregon at firstname.lastname@example.org and they will email you the file. It is a large file.
You can send $7.00 to People First of Oregon atPeople First of Oregon
PO Box 12642
and they will send you a copy on double-sided, three-hole punched paper, ready to be put into a binder.
Once you get it, you can make copies and share it. People First of Oregon gives permission to freely share the handbook, but they do not give permission for any commercial use. I don't, incidentally, know yet whether there is a screenreader-friendly version of the handbook; if there isn't, I am assuming that People First's copyright permissions would allow us to make one.
Speaking of People First, have you read Mouth's story about People First Tennessee and their suit against the Arlington Developmental Center? Read this story at http://www.mouthmag.com/peoplefirst.htm
Can private organizations disable people?
Sharon Lamp, a transit activist who uses a wheelchair, doesn't like to be tied down when she uses public transportation. For one thing, drivers use methods for tying her down that can damage her wheelchair. For another, she doesn't like being trapped in a situation she can't get out of on her own. She's already been assaulted on a public bus while tied down and unable to defend herself or get away.
But when an elevator in a Chicago Transit Authority train station broke down and CTA officials called a paratransit provider to get her around it, she found herself in a struggle.
Ms. Lamp had been riding on a train that didn't require tie-downs, and she insisted that they couldn't impose greater restrictions on her in their workaround.
Neither the paratransit company nor the CTA agreed with her. They called the police.
The officer who responded didn't see it Ms. Lamp's way either. "If you were riding in my car," she said, "you'd wear a seatbelt."
Of course, says Ms. Lamp. If she transferred to a bench seat, she'd have no problem with a seatbelt, because she would be able to take it off. Moreover, if anyone on the bus got into the police car, they'd be expected to wear a seatbelt. But tie-downs that are required only for some riders and that can be disengaged only by vehicle operators put her at a distinct disadvantage.
While ambulatory people regard the tie-down process as one of securing a piece of equipment, Ms. Lamp and many other wheelchair users regard their chairs as extensions of their bodies. As a result, mandatory inescapable securement seems to some chair users more like shackling than sheltering -- though others prefer to be secured to avoid the sensation of sloshing around in a vehicle with every bump and turn and would oppose a system in which tie-downs were unavailable.
The CTA, the paratransit company, and the Chicago Police Department didn't see how it mattered whether Ms. Lamp could get out of the restraints or whether she had a reasonable fear of assault. It was safer to use the restraints, they figured. What if the bus crashed? And abracadabra! the question of Ms. Lamp's right not to be restrained against her will vanished -- and with it a clear description of what it was she was being required to put up with -- and replaced by the question of whether seatbelts are a good thing.
People who walk onto CTA buses and trains are still allowed to make their own decisions about how to ride. They are allowed to make unwise decisions. Given that very heavy pieces of luggage may travel unrestrained, they are permitted to do things that, if there is a crash, may result in injury to someone else.
Ms. Lamp reports that "they have come up with an ambiguous policy regarding restraint on mainline. Bus and rail operators are now supposed to tell mobility device users to turn off their power or apply their brakes. Also, they are now required to encourage us to use their securement systems and the operators are supposed to get the make and model numbers of our devices if we decline securement."
There are bus drivers, she tells me, who have concluded that this rule means they can force riders to be tied down, and will refuse to drive with unsecured riders, or will call police to deal with them.
"The worst part of this reaction, is the response from other riders," who have reacted to drivers' announcement that everyone's trip will be delayed by the actions of a single wheelchair user -- not that it will be delayed by choices made by bus operators or transit officials -- with anger, threats, and in at least one case physical assault.
In other words, the CTA is insisting on its right to disable wheelchair users as public transit passengers -- it is insisting on its right to prevent some passengers from exercising the choices and freedoms available to everyone else -- and it is counting on irate passengers and the Chicago Police Department to back them up.
Cal Montgomery reads a lot of books, argues with a handful of people, and tries to cause a useful degree of trouble from her home in Chicago.
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