Monday, April 21, 2014
Tuesday, April 22, 2014
Wednesday, April 23, 2014
Thursday, April 24, 2014
Friday, April 25, 2014
Saturday, April 26, 2014
Sunday, April 27, 2014
Saturday, April 26, 2014
A Piece Of Our History
Ollibean - January 24, 2013
For those might not be aware, Ed Roberts was as close to a “Father” as the Independent Living Movement has. He had pollo as a child, and for the rest of his life he used a wheelchair and needed equipment like an iron lung or respirator to breathe. He and some of his fellow disabled students started an activist-oriented, DIY disabled students organization at UC Berkely in the late ‘60s. That organization formed the basis and model for the hundreds of Centers for Independent Living all over the United States, serving people with disabilities of all ages and all degrees and kinds of disabilities.
The “504 Rallies” were a nation-wide wave of protests to put regulatory teeth into the first comprehensive disability rights law in the United States -- Section 504 of the Rehabilitation Act. The rallies are widely recognized as the true beginning of the Disability Rights Movement … mass protests and sit-ins at Federal offices organized and carried out by disabled people themselves, not their families or professional allies.
Ed Roberts gave the speech almost exactly 37 years ago, April 30, 1977, after sit-ins lasting 3 weeks resulted in full implementation of Section 504. Do read the whole thing at the link above. Here are a few of the parts that mean the most to me:
"We have to begin to think very clearly, that what we need to do is help raise the consciousness of our fellow Americans with disabilities, to help them come out from behind, from the back wards, from the institutions, from the places, the garbage heaps, of our society. We have to stop the warehousing, the segregation, of our brothers and sisters.”
"We have begun to ensure a future for ourselves, and a future for the millions of young people with disabilities, who I think will find a new world as they begin to grow up. Who may not have to suffer the kinds of discrimination that we have suffered in our own lives. But that if they do suffer it, they’ll be strong and they’ll fight back.”
“ … we, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us."
"We are no longer asking for charity. We are demanding our rights!”
"And we will march ahead together. And nothing will stop our achieving equal opportunity, and the right to move about freely in this society.”
"We will storm the schools and open them up. We will be sure that each person with a disability who has special needs has the money and the power to gain what they need to move them back into the mainstream of society. And we will assure a future for the millions of people who are not now disabled. You know, you come to think of it, that we are assuring a future for a lot of people we don’t know at all, and who don’t know that their future may be, very similar to ours.”I don’t know whether to feel great or terrible that these words from 37 years ago are still bracing, even radical. They crackle with energy and purpose and specificity, in a way that vague feel-good generalities about “awareness” just don’t. Sadly, though we have made progress, a lot of the goals Ed talks about remain unfulfilled.
Sorry everyone. I’m just feeling old and nostalgic today!
Photo Of The Day
From The Perks Of Being Disabled Tumblr blog, via Just Rollin On. The Perks Of Being Disabled is on a roll, so to speak, posting lots of photos like this of customized wheelchairs.
"Criptiques" Podcast
I finally listened to the first Criptiques Podcast, featuring an interview with one of my favorite disability bloggers, Emily Ladau. Emily and her podcast interviewer, Catlin Wood, say during their discussion that they are making each other nod their heads a lot, especially describing being visibly disabled in college and only gradually coming to feel connected with a disability community or "crip culture". I nodded so much I worried my head would fall off.
We need more disability-related podcasts like this.
The podcast accompanies the recent publication of Criptiques, by Caitlin Wood, an anthology of essays on disability by people with disabilities. I look forward to the next episodes. And I ordered the book, too.
Friday, April 25, 2014
Deaf And The Police
I’m a not legal expert, but this all seems like good advice for Deaf people dealing with the police. Quite a lot of it could be helpful for people with other disabilities as well … including mobility impaired, cognitively impaired, and mentally ill people. I found it interesting that on the YouTube page for this video, a sizable minority of the commenters were down on this video. Most of them I believe are Deaf themselves, based on the context and tone of their remarks. Basically, they seem to be saying that Matlin’s advice won’t work because the police are either actively hostile or completely irrational. That’s an understandable view if you have had your rights violated by police, but I don’t think it necessarily negates the advice. She’s not saying to Deaf people, “Behave yourself and everything will be fine.” She’s saying be cautious, understand a bit of where the police are coming from, and use good sense and proper timing in fighting for your rights.
Disability News
It has been awhile since I did a post on random disability-related new stories. Here are three that caught my eye:
Michelle Diament, Disability Scoop - April 22, 2014
It is hard to tell, but it sounds like the couple’s case was dismissed on technical grounds, not on the actual issue. That’s what a dismissal means, I think; the judge doesn’t rule on the question, which means it remains undecided. That is a slightly better situation for the plaintiffs, Forziano and Samuel, than if the case had been fully heard and a decision rendered. On the other hand, it is puzzling why the judge felt their discrimination case was based on their marital status rather than their disabilities. Did their attorney do a poor job, or make the wrong legal arguments? This is an important case with implications for all intellectually disabled people living in group homes. Do these residents have an absolute legal right to marriage and cohabitation, just as they have a right to food, shelter, and disability-related care? I hope it gets fully heard so they can at least know where they stand.
Paul Walsh, Star Tribune - April 24, 2014
As with the similar Starbucks incident a few months ago, I doubt that it’s McDonald’s corporate policy to bar service animals from their restaurants. What these incidents seem on the surface to have in common is on-site, middle management staff who are poorly trained and maybe a little drunk with power. Given how badly these large food service companies treat their workers, I kind of hate to sic Human Resources on them, but it’s probably the true answer to this continuing problem of basic, entry-level disability rights not being respected. It is also worth noting that lawsuits may be the most effective way to get these incidents treated seriously by corporate headquarters.
Michelle Diament, Disability Scoop - April 25, 2014
Yesterday, I followed Ari Ne’man’s Tweets from FDA hearings on this issue. I don’t like it when the disability rights movement portrays opponents as mustache-twirling villains, but the people using this shock devices in "aversive therapy” seem pretty chose to evil. On the one hand, I can accept that that they may in fact be working with extremely difficult people with communication and behavioral problems that are extremely hard to deal with. On the other hand, they seem to rely on the same kind of premise that military and intelligence agencies use to justify torture. They ask us to accept the premise that the only alternative to their rather nasty practices is some kind of unthinkable disaster. For “torture” it’s an act of terrorism. For the Judge Rotenberg Center it’s violence and self-injury. The thing is, in both cases, the premise doesn’t hold up. They have shoddy evidence that what they’re doing is effective, and a different view of what autism is seems to produce better results using gentler methods and probably a bit more acceptance of “abnormality”. Also, I think it is important for people to understand that this is not about “shock therapy” used to treat other mental health conditions like depression. That probably should be banned, too, but it is more clearly a treatment. What the FDA is considering banning is shocks used to change behavior through painful punishment. Basically, it’s like training your cat, except that instead of water from a squirt gun, it’s painful electric shocks, and it’s not a cat, it’s a human being … a human being who’s disability specifically messes with how they process stimuli, and their ability to understand things and communicate. I can’t help thinking that on some level, this practice boils down to angry, frustrated practitioners repeatedly punching a button on a remote, yelling, “Act normal, dammit!” through gritted teeth.
Thursday, April 24, 2014
Disabled People Need Three Things - 3. Agency
"One's agency is one's independent capability or ability to act on one's will.”Wikipedia: Agency (sociology)
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. So far, I have covered Accessibility and Money. Today, I conclude with an examination of Agency.
I’ll be honest, I was looking forward most to writing about Agency, because it means a lot to me. But, it’s been the most difficult part of this series to write, because Agency is also something I have only recently begun to understand. I tried six different times to explain what I mean by Agency, and why it is so central that it qualifies as one of the three most important needs people with disabilities have. In the end, I could only come up with a somewhat random list of statements and observations about disabled people and Agency. Hopefully together they will make my meaning clear.
Here we go ...
- Agency encompasses a bundle of internal personality traits and ways we want to be treated by others, including, but not limited to: freedom, dignity, integrity, honesty, autonomy, initiative, self-awareness, sentience, choice, independence, human rights, and respect. None of these concepts quite cover what we’re talking about. Agency is the best term I have found so far that expresses them all together.
- It is tempting to think that Agency comes with or is equivalent to adulthood. Yet, children clearly can have Agency, even if it is less developed than adult Agency. Babies may be good examples of people who have many great qualities, but may not at that stage have Agency.
- Agency is one of the things people disabled later in life miss the most. When they describe how others now treat them differently, and how they feel they have lost something subtle but somehow critical ... what they've lost is Agency. On the other hand, growing up with disabilities can make it that much harder to develop full Agency in the first place.
- When a disabled person says that they aren’t defined by their disability, what they mean is that despite their disability, they have Agency. This also implies that disability itself can take away Agency if you let it. I don’t agree with that, but I understand how many people might think it.
- When you meet a disabled person and ask them questions about their likes, dislikes, goals, and dreams ... and they answer "I don't know" … that is someone who hasn't developed, or has lost Agency. You can see it, too, in youth with disabilities who always look first at their parents before answering any substantive question.
- Lack of agency is always being the object of a sentence, never the subject. It is having things done to us, and rarely doing things for ourselves or for others.
- Agency is one of the reasons so many of us balk at being called “Inspirational”. Even though it is a compliment, it feels like a role we never accepted, an effect we never initiated. When disabled children are habitually called "angels" and "miracles", they become a little less human and a bit more like symbols of virtue, or catalysts in their parents' spiritual lives.
- Agency is not recognized when we try to understand autistic or intellectually disabled people a dozen different ways, and somehow overlook just asking them.
- Disabled characters in books, movies, and TV can tell us a lot about Agency. On "Breaking Bad", Walter White's son Flynn is a likable character with Cerebral Palsy, and one of the supposed motivations for his father's descent into a life of crime. But for most of the series, Flynn lacked true Agency. He gained it to some extent when he finally turned on his father and defended his mother. It was an amazing scene partly because Flynn for the first time demonstrated Agency.
- Agency means being main characters in our own stories, not just a supporting players in someone else's.
- When people automatically doubt our interpretation of our own experiences, when we are assumed to be incapable of properly understanding our own situations, we are robbed of Agency.
- "Nothing about us without us." is all about Agency. So is "The dignity of risk." Being liked and treated kindly helps, but it doesn't
- Not having Agency is the waitress asking, "What does she want to drink?” It is the doctor asking, “When did he start having pain?”
- Agency is what is missing when reporters write news stories about disability without speaking to or quoting disabled people.
- For Agency to be real, we have to exercise it, and others have to acknowledge it. It is a two-way street.
- Having Agency leads to better treatment by others, and more confidence in ourselves to deal with others. It even makes it easier to cope when things are at their worst.
There is probably a lot more that can be said about Agency, and about the other priorities in this series, Accessibility and Money. Please do leave your thoughts in the comments. Maybe in a day or two I’ll try to wrap this series up and figure out if it means anything.
Wednesday, April 23, 2014
Tuesday, April 22, 2014
Disabled People Need Three Things - 2. Money
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. Yesterday I explored a broad definition of Accessibility, and what it means for disabled people. Today, it’s all about the Money.
Disability Thinking - March 24, 2014
"Money is the ultimate adaptive technology. A wheelchair can only be useful as a wheelchair. You can't obtain food with a hearing aid. A counseling program won't help a quadriplegic get out of bed in the morning. Money, though, in the right quantity, can be translated into just about anything a person with a disability needs to unlock their potential and make their theoretical independence real.”
It turns out I already blogged about this a little over a year ago. I don’t really have much to add.
Except for this. Imagine a world without money. It sounds sort of idyllic, and it would be, if everyone at the same time they gave up money also all decided they would henceforth be happy to do stuff for others, expecting nothing in return … all the time. Otherwise, the disappearance of money would leave disabled people especially helpless, because we would be entirely dependent on charity and kindness for the help we need to do things that our disabilities prevent us from doing.
Fewer of us than average have the physical ability to grow or hunt our own food. Nor are many of us capable of building our own dwellings, wheelchair accessible or not. Those are just the basics, but many of us need things like sophisticated wheelchairs, hearing aids, ventilators, and other devices that are very hard to produce as artisanal handicrafts. Not to mention those of us who can’t get out of bed, feed ourselves, or wipe our butts without the help of another human being.
The problem, obviously, is that while money is especially empowering for us as disabled people, it is also harder for us to obtain. It probably shouldn’t be. If economics worked like Monopoloy, for instance, where the game starts with the “banker” doling out a set amount of money to all the players, it might be a bit easier, or feasible for us. SSI and other disability-related benefits are gestures in that general direction, but just barely. More of us could probably earn all that we need than typically do, and there are dozens of possible reasons for this. In any case, this is not the place to suggest how disabled people are supposed to get more money. That is another discussion.
My point here is that I sometimes think we spend too much time trying to think up complicated service systems with hundreds of moving parts and barriers to entry, when really, most of us who have disabilities could improve our own lives considerably if we had more money. It wouldn’t solve all of our problems, but more money sure would make the rest of our problems easier to solve.
Tomorrow, I will finish this series with the most hard to describe, but possibly most important thing disabled people need … Agency.
"Shared Abilities" Blog Post
Monday, April 21, 2014
Disabled People Need Three Things - 1. Accessibility
Last Friday, I proposed that disabled people really only need three things: Accessibility, Money, and Agency. Leaving aside food, clothing, and shelter, which all people need, Accessibility, Money, and Agency encompass all of the “special” needs of disabled people, of all ages and disabilities. This week I’ll try to explain what I mean.
First, Accessibility ...
By “Accessibility”, I mean all of the ways in which disabled people are admitted to physical places and social pursuits that we might otherwise be barred from because of our disabilities. We gain access because of deliberate action to change the physical environment and social structures we live in. For example:
- Making buildings, environments, and services of all kinds physically usable by wheelchair users and people with other impairments. This includes businesses, government offices, recreational areas, houses of worship, streets and sidewalks, transportation services, schools, and homes. It is the gradual and eventually complete transformation of every community’s basic infrastructure so that no unnecessary physical barriers keep us out or restrict our choices. It is the practical ability … not just the theoretical freedom … to go anywhere, when we want, with little or no help from others.
- Changing laws, regulations, policies, and practices that have historically kept disabled people from full participation in all kids of pursuits, including employment, political participation, education, and socialization. It involves knocking down bureaucratic barriers like eligibility rules that screen out disabled people, overly restrictive and unnecessary physical requirements, medicalization of non-medical concerns, overprotective systems that put safety above independence, and other policies that sometimes intentionally, sometimes unintentionally limit disabled peoples’ choices and opportunities.
- Access to assistive technology and individual accommodations, which help individuals adapt beyond basic accessibility. This includes mobility devices like wheelchairs and walkers, simple adapted hand tools and utensils, and computers and Internet services that can be used equally well by people any impairments. It also includes all of these adaptive tools being affordable to all, and designed thoughtfully for the maximum convenience of the user.
- Changing popular misconceptions about disability, which tend to create misunderstanding, fear, resentment, and social separation of disabled people by non-disabled people. In a sense, disabled people are at least partially kept out of full social life by how they are received by others. At the most basic level, what we need is for people to appreciate our specific differences and unique needs, while at the same time regarding us as essentially no different as people from those who are not disabled. It means we should neither be ostracized, nor put on a pedestal.
All of these measures, whether physical or social, involve the central idea of Accessibility … of deliberately creating environments that are as welcoming and functional for disabled people as we know how to make them. They all involve positive actions, sometimes expense, and at the very least individual decision and psychological change. As with other kinds of prejudice, it is not enough just to be nice or refrain from being mean. You have to make a pro-active effort to include disabled people, to meet us at least halfway so that our own individual efforts … hard work, risk-taking, and “putting ourselves out there" … can be effective.
Tomorrow, I’ll take a look at Money … something everyone needs, but which is uniquely empowering for disabled people, when we can get it.
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