Wednesday, April 30, 2014

Photo Of The Day

Young white woman with pink highlighted hair sitting in a manual wheelchair, looking up at an African-American woman standing behind the chair, holding the push handles
From the Wheelie Wifee Tumblr blog, via The Lame Dame.

Follow the link to a few more photos, and an explanation. You might call it Peer PT.

Book Preveiw

Book cover: title "Criptiques", edited by Caitlin Wood, aqua blue cover
I just received my copy of Criptiques, the "crip culture" anthology edited by Caitlin Wood. I haven't gotten very far in the book, but based on Wood's introduction, I am 99% sure I am going to love it:
"Crip is my favorite four-letter word. Succinct and blunt. profane to some, crip packs a punch. Crip is unapologetic. Audacious. Noncompliant. Crip takes pleasure in its boldness and utter disinterest in appearing "respectable" to the status quo. It's a powerful self-descriptor, a cultural signifier, and a challenge to anyone attempting to conceal disability off in the shadows. Crip is anti-assimilationist and proud of it. Crip is outspoken with no patience for nonsense. Crip is my culture and where I want to be."
For months, I have been trying to figure out how to describe the fundamental differences between disabled people who are part of "crip culture", and those who even when they are generally positive and hopeful, still seem to view their disability as an unwelcome, barely tolerated guest. Caitlin Wood does such a great job of explaining the "crip culture" perspective that it took my breath away.

I can't wait to read the essays, and I expect I'll have more to say as I go.

Tuesday, April 29, 2014

Photo Of The Day

1920s black and white photo of a man driving a car with prosthetic arms.
From the Cripple Club Tumblr blog.

Prom Thoughts And Regrets

Huffpost Good News - April 29, 2014

Here we go with another disability-related prom story, with some similarities and key differences from the story I commented on yesterday. I guess prom and disability is a potentially rich vein for melodrama, uplift, and regret.

I never attended the prom. I slightly regret it now, mostly because I know part of the reason I didn’t was that I just assumed the whole scene wasn’t “for me”, because of my disabilities. However, thinking back to the way I looked at things then, I can’t imagine actually putting myself through the traditional Prom routine. I can definitely picture going if attending solo to hang out with friends had been a socially recognized option, but as far as I knew at the time, it wasn’t. I certainly can’t picture going the tux, limo, corsage route, unless maybe me and a girl had decided to do it as a semi-goof. The whole traditional “formal” dating scene was something that I was excluded / excluded myself from, partly because of my disability and piss-poor body image, but absolutely partly because I didn’t buy into that scene anyway. If I’m honest with myself, it’s hard to pinpoint where one part of my attitude ended and the other began.

This is a good example of why it's ridiculous to talk about our disabilities and our “true” selves being separate, or whether we would jump at a cure if one was available. I can’t really separate my viewpoint on high school social life from my identity as a disabled person. My disabilities didn't fully determine my outlook, but they heavily influenced it.

Would I have gladly become a high school jock or Prom King candidate if I hadn’t had disabilities? Did I turn out nerdy, intellectual, and bookish because those are all mental pursuits, where physical strength and stamina don’t matter? I have no idea. I might as well wonder what I'd be like if I had grown up in Soviet Russia, or had been born in 15th Century Venice. In that sense, my disabilities and I are inseparable.

I do know that there are quite a few things I might have enjoyed that I avoided trying because they seemed like too much hassle, as I saw because of my disabilities. I'm not sure if the prom is one of them, but there are definitely things I regret not trying because of my disabilities. Maybe some other time I will make a list.

Someone could write an interesting Disability Studies thesis on students with disabilities and the traditional American high school prom. I wonder if anyone has done a comprehensive study of different high schools’ policies and practices around proms and other dances, and whether any of them consciously try to be more inclusive of students with disabilities. I would also love to see a survey of “human interest” news stories about disabled kids attending the prom.

If you have any disability-related Prom experiences or thoughts, please share them!

Monday, April 28, 2014

Photo Of The Day

Young woman in an electric wheelchair, viewed head-on, wearing sparkly leggings, tall boots, and a plaid shirt.
From the wheelingalong24 Tumbr blog, via Independent and Visible.

Questions Not Asked

I am feeling a little better now, so let’s give this a shot ...

Nineveh Dinha, Fox 13 Salt Lake City - April 25, 2014

First of all, credit where it’s due … Fox 13 included an actual quote from Kaidn Shield. We heard a little bit of what the disabled guy in the story is actually thinking. Granted, it wasn’t so much an evaluation or personal opinion on the subject … it was more of a factual report on what he expects to happen at the Prom. That’s still a lot better than the heartwarming disability stories where the disabled person is a voiceless object.

Unfortunately, I’m not sure there’s any way to cover a story like this without it coming off as condescending. I think what’s really missing here is some acknowledgement that there are bigger issues involved.

- Why, exactly, is Kaidn often “left out” of school activities? His mother says that his disabilities prevent him from participating, but he doesn’t appear to have any significant physical impairments, so is it social stigma that’s really at issue? Taylor Roberts is planning on studying Special Education and disability work … what is her theory? What would she do to improve disabled kids' overall inclusion in schools?

- Have Taylor and Kaidn known each other for a long time? What do Taylor’s friends think of what she’s doing? Has anyone made any snotty remarks or questioning of her motives, and if so, how would she reply?

- Does the school create any barriers, even inadvertently? For instance, do students have to have a date to come to Prom, or can they come solo and just have fun with their friends? That might take some of the social pressure off for all sorts of kids who for various reasons aren’t ready to “couple up”.

I suppose the reporter might have asked these or other substantive question, but there wasn’t time to fit them into the segment. It would be nice maybe to get a followup story that focused on the social forces that affect kids like this everywhere.


Light blogging … or maybe no blogging today due to feeling yucky.

Saturday, April 26, 2014

A Piece Of Our History

Ollibean - January 24, 2013

I ran across this at earlier this week. I worked at a Center for Independent Living for over 20 years, so of course I knew who Ed Roberts was, but I can’t believe I had never read this speech.

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

Man with shaved head sitting in a customized "steampunk" wheelchair
From The Perks Of Being Disabled Tumblr blog, via Just Rollin OnThe 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

News topic icon
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

Photo Of The Day

Woman with short black hair, wearing dark patterned clothes and tall boots with red laces, sitting in a a wheelchair, with hand up holding iPhone
From the Tea Time For The Disenchanted Tumblr blog.

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)
Ideas topic icon
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


No blogging today … I’m feeling crappy. I’ll give it another shot tomorrow.

Tuesday, April 22, 2014

Disabled People Need Three Things - 2. Money

Ideas topic icon
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

Shared Abilities logo
My most recent blog post at Shared Abilities is up and ready to read. Who was the Most Powerful Person with Disabilities in History?

Monday, April 21, 2014

Photo Of The Day

From the Fashion Bomb Daily Tumblr blog.

Disabled People Need Three Things - 1. Accessibility

Ideas topic icon
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.

Saturday, April 19, 2014

What Was Pope Francis Doing?

Delia Gallagher, CNN - April 17, 2014
"Those chosen for the special honor included a 16-year-old boy from Cape Verde who was paralyzed in a diving accident last year, a 19-year-old man and a 39-year-old woman diagnosed with cerebral palsy, and two 86-year-olds with mobility problems.”
I know that the sensible, non-obsessive thing to do in situations like this is to compartmentalize and appreciate. Compartmentalize that it’s nice for the Pope to make such a gesture to a group of lowly and disadvantaged people, and set aside the question of why people with these disabilities are housed in a “home for the elderly and disabled”, and not living at home, with their families, or on their own if they choose? And then just appreciate the act of compassion … or is it respect?

Then there is the theological meaning, which is probably more important, but which I am not qualified to say much about. From what I have read, this Pope has often used the foot-washing ritual to buck high-church tradition and show love and respect for socially stigmatized people … like pregnant women in maternity homes, youth in drug rehabilitation, and AIDS patients. In which case choosing to focus on disabled people is significant, possibly a unique way of highlighting and de-stigmatizing them.

This would be a significant if subtle break from another Church tradition of a compassion towards disabled people that tended to further stigmatize and condescend. Think Mother Teresa, whose order wouldn’t install elevators required by local codes in their orphanages because they considered them, a luxury. They would carry disabled patients up and down flights of stairs. For them, the symbolic sacrifice of the giver was the whole point, and the recipients of their acts were little more than bit players in their interpretation of compassion. It’s the classic misunderstanding of compassion as something primarily for the giver, in which the receiver is nothing but an inert vessel.

That’s what I worried was going on with Pope Francis’ foot-washing. It still looks a little bit like that to me, though ultimately I don’t sense that Pope Francis thinks this way. I appreciate the idea of the highest Catholic Priest serving rather than being served.

Wouldn’t it be interesting, though, if one of those disabled people had reciprocated, and washed the Pope’s feet? Or, washed one another’s feet? Not to reinforce the perception that disabled people are humble or subservient, but to underscore that we can be givers as well as receivers.

Scheduling Note

I am going to wait until Monday to post the first of my three-part series of blog posts, Disabled People Need Three Things. Im thinking of writing something today about Pope Francis washing disabled peoples feet. Maybe today, or maybe tomorrow. Anyway, I have been reading the headline about that for a couple of days and Im really curious what that was about.

Friday, April 18, 2014

Disabled People Need Three Things

Ideas topic iconI had fun a couple weeks ago writing a three-part series of blog posts on different forms of "Ableism”. So, I have decided to do another series, this time fleshing out another “grand unified theory” of disability. I will argue that disabled people of all kinds only really need three things:

1. Accessibility

2. Money

3. Agency

Over the next three days, I will explain what I mean by each of these. For now I just want to clarify that when I talk about things disabled people need, I don’t count things everyone needs … like food, clothes, and shelter. I’m not talking about curing any diseases or lessening our disabilities through therapies. To me, those are separate concerns. What I am looking it is what people with disabilities uniquely need to live well with their disabilities.

Why am I doing this?

I'm doing it because I think we sometimes get so caught up in specific goals that we lose sight of what we really after. There are thousands of disability-related policies to advocate, hard-won victories to defend, and small, incremental improvements to shoot for. But really, they all relate in some way to these three things ... Accessibility, Money, and Agency. Or, they should relate, and if we are working our asses off for something that doesn't relate, then maybe that's a sign we should reassess what we are doing.

Stay tuned!

Photo Of The Day

Photo of a blonde teenager with glasses, standing with he help of a blue wheeled walker, with country road and trees in background
From the Fight Tumblr blog.

Best Article On Assistive Devices

That Crazy Crippled Chick - March 30, 2014

One of the interesting things about “disability pride” is that for people who don’t actually have it, it probably seems like kind of a feeble, made-up attempt to turn lemons into lemonade. I used to think that, myself. I never really felt bad about my disability, but the idea of showing it, embracing it, or celebrating it seemed almost nonsensical to me.

One of the first ways I began to understand a different view was through observing how a lot of disabled people come to see their wheelchairs, crutches, and other assistive devices as more than just tools. I experienced it myself when I used a scooter throughout college and graduate school, and in the same period started using a ventilator at night to help me breathe. I never felt stigmatized by them, and soon I started to feel grateful for them almost like one is grateful to a person. Seeing my scooter or my ventilator after being away from them for a bit made me feel comfort, like I was coming home in a sense.

As I met other disabled people, and got to know some of them online, one thing thing that the happiest, most independent of them had in common was an intimacy and sense of fun about their devices. I don’t know which comes first though. Do you come to embrace and love your wheelchair because you embrace and take pride in your disability identity? Or, does incorporating a wheelchair into your look and personality help you accept and embrace your disability?

This isn’t quite the same discussion “That Crazy Cripple Chick” is having, but what she’s writing about here is closely related, and it is a great starting point for someone who, for whatever reason, can’t seem to view assistive devices with anything but sadness, disappointment, or fear.

Thursday, April 17, 2014

Photo Of The Day

person in a wheelchair having just jumped out of an airborne airplane
From the Disable Seeker Tumblr blog, via Ramp Your Voice!

My Cup Runneth Over

This morning I watched a few episodes of the British TV show QI, a a sort of comedy quiz show hosted by Stephen Fry. One of the questions was about how many steps a person can take before definitely spilling a cup of coffee. The answer is between 7 and 10 steps. It is predictable like that because of the physics of liquid oscillation. The liquid in your cup starts moving, and as you take each step, the ripples in the cup build on themselves so that no matter how smoothly and carefully you walk, eventually you are going to spill some.

I was thinking that this would be a good way for disabled people to measure just how off-kilter our walking is ... if weird walking is part of our thing ... or how skilled our handling of a wheelchair is I suppose. Judging from the blotches of tea on the tile floor of my kitchen, I can go at most 3 steps before I start slopping.

On "QI", after Fry explained how oscillation works, he talked about how it might be possible to invent a cup that counteracts oscillation so it would be spill-resistant. I literally did not understand the explanation, but I would buy the hell out that cup.

Wednesday, April 16, 2014

The Mayor Of Swindon

News topic icon
Frances Ryan, The Guardian - April 15, 2014

"Are we still letting mongols have sex with each other?"

Apparently, Nick Martin, the now ex-Mayor of Swindon in the United Kingdom, said this during a council discussion of the "challenges of disabled adults in modern society". He was officially required to apologize for the words he used, tried several times to do so but with obvious insincerity, and has now resigned.

I have no problem with certain kinds of statements by officials being deemed off-limits and requiring apologies. But the words themselves might be only part of the story. I would very much like to know more about that discussion. Was the Mayor's offensive statement accompanied by regressive policy ideas? What did the other people in the discussion think? Were they all appalled, or did some of them chuckle or nod? Was it a casual chat, or were actual policies being debated that could affect real people? What policies were being discussed that could produce this specific statement about disabled people, sexuality, and fertility? That would seem to be important, but so far I haven't seen anyone mention the context.

Absent any other information, I am glad the man resigned. In all likelihood, this wasn't an isolated incident. Martin probably has regressive views on all sorts of people and ideas he disapproves of. However, it does seem like focusing on the words themselves rather than the meaning behind them serves both sides in a rather unfortunate way. The higher officials get to feel good that they have punished the Mayor for a tasteless, embarrassing indiscretion, without reference or apparent impact on any substantive policy issues. Meanwhile, as this Guardian column points out, the ex-Mayor gets to feel like a martyr to "political correctness" and a defender of free speech and old-fashioned plan-spokenness. And he still hasn't been asked to explain why he apparently thinks "mongols" shouldn't have sex. What is he suggesting? Does he think that government entities that were under his Mayoral control should have the legal power to regulate disabled peoples' most intimate choices?

I suspect that there are many more government officials who feel the same way about the rights of intellectually disabled people, who would never expose their beliefs with such offensive words. That is not a comfort.

Would Martin still be Mayor of Swindon if he had used more polite words to advocate state control of an entire population's fertility and sex lives? Words can be hurtful in and of themselves, but they also reflect ideas, and ideas can be translated into action. It's the actions I worry about more.

Tuesday, April 15, 2014

One Year Later

In honor of the Boston Bombing survivors, one year later, I am re-posting this great video by AmputeeOT:

Most of what she says applies equally well to anyone experiencing a new disability.

Survey Results

A big thank-you to the 29 people who have completed my survey on what they’d like to see in a disability-themed website. Here are some of the results so far. I have organized the top rated choices in each section … with ties grouped together. I will be using these results to help shape a more extensive Disability Thinking website. In the meantime, the survey is still open, so if you haven’t done it yet, feel free.

Website Features

First Place
  • Disability News - Links & Analysis
  • Articles by Invited Writers
Second Place
  • Resources - Links by Topic
Third Place
  • Blogs by Selected Bloggers
Fourth Place
  • Personal Stories by Invited Writers
  • Advocacy - Features & Campaigns

First Place
  • Accessibility
Second Place
  • Assistive Tech & Mobility Aids
Third Place
  • Disability Rights Laws
  • Disability In Popular Culture & Media
  • Identifying & Combating Ableism
  • Disability Policy & Politics
Fourth Place
  • Medical Care
Who Did The Survey?
  • 72% Disabled
  • 12% Disability Services Providers
  • 8% Family Member of Disabled Person
  • 8% Other
Of The Disabled People ...
  • 85% Physical / Mobility Impairment
  • 30% Mental Illness
  • 30% Chronic Illness
  • 15% Sensory Impairment

Photo Of The Day

Photo of a woman wearing sunglasses, in an electric wheelchair, taking a selfie, reflected on the dirty, scuffed side of a parked car
From the Disability Fashion Project Tumblr blog.

Tax Day!

Matthew Yglesias, - April 14, 2014

Chart reading: Most of budget goes toward defense, social security, and major health programs
"As the saying goes, the government is an insurance company with an army — it takes care of the elderly and the sick, and it projects force abroad.”

Since today is tax day, I agree with that it is a good time to look at the broad outlines of what the Federal Government spends money on. I am also including the chart they use, from the Center on Budget and Policy Priorities.

The quote above seems to say it all, and I must say, put this way, it doesn’t sound so terrible. The “insurance” part … Social Security, Medicaid, and Medicare I happily support. The military? Well, that’s another matter. Still, until we decide to become an entirely different kind of country, it seems like the United States’ position in the world means that the military will always be a big portion of the Federal Budget, with modest fluctuations as circumstances change.

A few more thoughts:

- It is hard to pick out spending for disabled people, because most of our direct benefits are parts of the Social Security, Medicaid, and Medicare categories, plus portions of the 12% “Safety Net” category for things like Food Stamps and Housing Subsidies. This report doesn’t say how much of Social Security is Disability and SSI, and how much is Retirement, which I might try to find out.

- It has been said before, but bears repeating. Non-miliary foreign aid, shown here as “Non-Military International” is only 1% of the Federal Budget. So the notion that we ought to stop spending money on foreigners and help our people here is really kind of an empty idea. The same goes for things like government worker salaries and pensions, and paying Members of Congress. We might begrudge them their perks and benefits, especially when we disagree with them anyhow, but paying them nothing wouldn’t add much to programs we actually like, or reduce the deficit.

- Why is “Education” so low? Because this is the Federal Budget, and most day-to-day costs for public education are borne by states and localities. Federal money for Education generally goes for grants and extra supports which, again, don’t amount to much in comparison to the rest of the Federal Budget.

- Where is Obamacare? It isn’t here yet, in a chart of the 2013 Federal Budget. Next year it will probably be split between the “Medicaid and Medicare” category, and maybe have a category of it’s own for the subsidies people will be getting to buy private insurance.

Monday, April 14, 2014

Photo Of The Day

Man with full beard and mustache, wearing sunglasses, sitting in an electric wheelchair. Wearing bright red pants and a dark jacket
From the Oldmaninsorrow Tumblr blog, via Wheelchair Problems.

The Guy With The Sign

News topic icon
Adam Ferrise, Northeast Ohio Media Group, Ohio Media Group / Cleveland Plain Dealer - April 14, 2014

I am deeply ambivalent about this. On the one hand, the man’s specific acts of bullying are so bizarre that maybe there just aren’t any really appropriate legal remedies for them. The judge may have felt that none of the normal punishments available to her seemed right. As terrible as the man’s behavior was, it would probably be overkill to put him in jail for months or years, and it’s doubtful he has the money to pay a really big fine. But you can’t just ignore what he did, and public shaming may serve not just to punish Mr. Aviv, but also to raise awareness of bullying and the more vicious forms of ableism.

Also, it is possible that public shaming is just what Mr. Aviv needs. Maybe over 15 years he's convinced himself that he is the reasonable one, and he needs a reality check that most people do not approve of his actions.

Yet, I can’t help thinking that this is a stunt that will generate a lot of notoriety, and instead raising awareness, it will just raise a lot of self-righteousness as people say to themselves, “Look at that horrible schmuck. Thank God I’m not a terrible bully like him!” While most people aren’t bullies, many people do harbor some pretty awful ideas about disabled people. The difference is that they are self-controlled and smart enough to keep their own behavior in check.

Which leads me to another thought. Doesn’t it seem likely that Mr. Aviv is at least a little bit mentally ill? Nothing in the article suggests he or his lawyer brought that up, but I wonder. I keep coming back to the fact that his acts were not just mean, they were bizarre. So were his apparent motivations … like smells from a dryer. Is this a guy who just can’t function in close proximity to other people? Does he imagine a thousand slights and impingements that aren’t really there? I’m glad the judge also sentenced him to anger management classes, though as I say, a psychological evaluation might be a good idea as well.

I don’t know. Maybe the guy is a racist, ableist misanthrope who just couldn’t stand having a large, possibly noisy and active family next door. On the other hand, when I worked at the CIL, I knew people with certain mental health diagnoses who at their core were decent people, but because of sensory issues combined with garbled thinking, had a terrible time living in an apartment where people were constantly coming and going and talking with each other. I’m talking about people who I wished I had the resources to just move them to a nice cabin in the woods, where nobody would bother them. The article says that the family next door didn’t have the money to move away from their abusive neighbor. Maybe he didn’t have the money to move away from them, either.

Finally, I wonder how things will between Mr. Aviv and the Prugh family after his sentence is complete. My wild guess is that there will be Order of Protection sometime in the near future, because I doubt that Aviv is going to learn any meaningful lesson from holding his sign.