Keep Your Eyes On The UK

There’s probably going to be some kind of engineered showdown over funding Social Security Disability here in the United States. Disability activists are going to be pulled in a few different directions. Should we join the effort to “reform” the program and risk validating benefit cuts and narrowing eligibility? Or, should we line up to defend the program as it is, and miss the opportunity to reduce work disincentives and make other improvements we’d actually like to see?

Before we get too far down the road, we should pay careful attention to what’s been happening with “welfare” cuts in the UK, including cuts specifically affecting disabled people:

"One thing the welfare bill accomplishes is to put people who have failed a fitness to work test on to the same payment as people who have passed it, like some tent-revivalist preacher tipping sinners out of wheelchairs and screaming “Walk!” Who would have thought that electing people who hate the welfare state to run our welfare state could go so badly? In practical terms this change means people with things such as MS and Parkinson’s will lose £30 a week. That extra £30 a week was there because, sometimes, chronically ill people’s bodies don’t work so well and they might have to get a bus or a cab or pay the babysitter to stay for an extra hour so they can get to and from the latest humiliation from the Department for Work and Pensions."

This is from an angry article in The Guardian about the Labour Party, the UK’s main left-of-center party that historically has fought for the welfare state and defended the UK’s poor and working class. It’s roughly … and I mean very roughly … equivalent to the US’s Democratic Party. Yet, apparently they are pretty much going along with the Conservative Government’s austerity policies, which include a two-faced stance on disability policy.

Publicly, they use the language of empowerment and confidence in disabled peoples’ ability to work and be self-sufficient, while policy-wise they cut benefits and make everyone who gets benefits prove to poorly-trained bureaucrats that they really do need their government support. Meanwhile, they nudge and wink and tisk-tisk about “welfare scroungers."

It sounds familiar. The same kind of thing could easily happen here, if we aren’t very careful.

By the way, £30 a week, £120 per month, is equivalent to almost almost $47 per week, $187 per month. That's more than the cost of a few lattes.

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I Was So Young ...

This morning, a disability activist here in Plattsburgh emailed a bunch of people this Op Ed piece I wrote for the Plattsburgh Press-Republican newspaper about the Americans with Disabilities Act, just before it was signed into law on July 26, 1990.

When I saw what it was, I had a moment of dread. I couldn’t remember writing it, and I wondered if it would be embarrassing. In fact, it’s not bad.

On thing I noticed is that there are actually very few people making the libertarian argument against the ADA anymore. Apart from a few think-tank theorists, hardly anyone uses the ADA as an example of government overreach anymore. That’s a good thing, but also a bad thing. It’s good that we mostly don’t have to deal with ideological opposition anymore. But it’s also disturbing because it is further evidence that most people don’t see the government as an active participant … a cheerleader maybe, but nothing anyone feels afraid of anymore.

Any residual venom seems to be reserved for a few lawyers, and for disability activists.

Anyway, enjoy this pre-ADA, pre-Web, pre-Blog, pre-Disability Thinking snapshot from the archives.

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It's Refreshing

Why disability rights is everyone's business

Jeffrey Pfeffer, Fortune - July 14, 2015

Here we have a rare and refreshing thing. A business expert writes an article advocating stronger enforcement of disability rights laws, and it is published on a business magazine’s website.

What’s more, the writer, a non-disabled person who gained his initial insight through a temporary impairment, makes a stronger, simpler, more insistent case for disability rights laws than a lot of disability journalists, bloggers, and activists. Well, better than me anyway. I tend to hedge my advocacy posts with all sorts of caveats and acknowledgements of opposing views, something I think a lot of us are conditioned to do.

We have to keep reassuring the “average reader” that we are rational and realistic. We know our issues rarely make it to the front burner. We know “most people” don’t really understand, so they can’t be blamed. We have learned to live with unnecessary injustice. We’re not happy about it, but we’re not surprised.

Maybe that’s why laypeople and newcomers to disability issues can sometimes speak with a clearer, louder voice. What they lack in authority they make up for in fervor and sheer astonishment. They see, more clearly and emotionally that than some veterans of the struggle, that disability discrimination and inaccessibility at this point isn't just wrong, it is surprising, and it's bizarre.

It doesn't happen that often, but when a non-disabled journalist does a disability story and instead of crying tears of pity, instead asks, basically, "Why the hell are things still so shitty for these people?"... well, it's refreshing.

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Dueling Accessibility Stories

In Marshall, Minn., Main Street is rising up against flurry of disability suits

Matt McKinney, Minneapolis Star Tribune - May 18, 2015

Access for the disabled: Demanded by law, often ignored in practice

Kate Ross, Minneapolis Star Tribune - May 19, 2015

I applaud the Minneapolis Star Tribune for giving space to “both” sides of an accessibility debate.

It does seem like objectively, what’s going on with this “non-profit” is pretty shady … suing businesses for ADA violations as their main source of funding. I can imagine an organization doing something similar in a more productive way. If they chose their targets with more care, restricted them to larger, better resourced businesses, or offered settlements involving ADA compliance rather than just cash payments. Apart from the possibility of being a straight-up ripoff, it seems like the people running this organization have the kind of tunnel vision you sometimes see in disability activists, where they literally don’t perceive how the general public views the issue. It’s one thing to decide you don’t care, and pursue what’s right no matter the consequences. It’s another thing entirely to assume everyone will understand, because how could they not?

On the other hand, it’s worth wondering whether the business owners profiled in the first article are truly innocent victims, whether they are woefully ignorant of the ADA, or maybe just don’t give a damn about accessibility. Is this guy closing his bowling alley because he can’t afford to run it anymore due to the lawsuit, or is it out of spite? Maybe he was going to close it anyway, and he’s using the occasion to give a public “f-you” to people he sees as whiny busybodies.

The second article, published the next day, reminds readers that accessibility is a real issue, and that continued failure to make a business accessible 25 years after the law passed is a violation of the law. We may question the motives of the plaintiffs, but that has nothing to do with the guilt or innocence of the defendants.

I also found it interesting that the second article is by a young woman who had a short-term disability. In fact, her arguments are the usual, standard, pro-accessibilty material. They read like she has just done some research on a new subject for her … which seems to be the case exactly. Her editorial also brought up those old frustrations a lot of disabled people feel when a “newbie” describes their shock to discover that accessibility is still a problem today. Sometimes it seems like we disabled can repeat our complaints forever, but it doesn’t sink in until a non-disabled, temporarily disabled, or newly disabled person “discovers” the issue. In this case, that’s okay, because this article coming a day after the first serves a valuable purpose, in just the right way.

As far as I’m concerned, this is the issue. The Americans with Disabilities Act has been federal law for almost 25 years. I can’t imagine a single business, program, facility, or government entity that can legitimately excuse lack of accessibility by claiming ignorance. All of the facts and information you need to comply are freely available on the Internet. If you care enough to spend an hour browsing, you can at least figure out what you need to do. It takes a little more thought and consultation to decide how to proceed, but that’s pretty easy, too.

Suing businesses for personal gain or punitive fines isn’t the best way to do advocacy, in my opinion. On the other hand, I don’t feel sorry for any of the businesses that find themselves targeted, if they are, in fact, not accessible. There’s been plenty of time and opportunity do fix this. Just get on with it.

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Mainstream Article on Disability Etiquette

A powerful reddit thread reveals what it’s like to be disabled

Ana Swanson, Washington Post Wonkblog - April 24, 2015

You can’t swing a deceased feline in the Disability Blogosphere without hitting lists of advice from disabled people, offered to non-disabled people, on how we prefer to be treated. I think it’s a great exercise for ourselves, and I’ve seen some nice feedback from non-disabled readers, so I know some of them are reading and getting something out of it, too.

This Wonkblog compilation of a Reddit thread is unusually good reading of this kind, and best of all, it’s in a mainstream publication … two of them actually if you count the complete and original back and forth on Reddit. I am especially pleased because I agree with everything on the list. Most of the commenters are saying what disability activists and bloggers say all the time, but I love the irreverence and novelty of how some of these folks explain things. For one thing, they are almost completely free of disability jargon.

I do wonder … Reddit being Reddit … if Ana Swanson intentionally left out angry ableist responses. It's understandable if she did, since she set out to compile good advice, not online hate. However, if there were any ugly comments in the thread, it would be educational to see a sample of them. There is a reference to the common phenomenon of the hyper vigilant, self-appointed guardian of “handicapped parking,” but that is presented mostly as a misunderstanding. The kind of thing I see a lot is people drawing distinctions between “good” disabilities and “bad” ones, a widespread skepticism and intolerance for any kind of “emotional disabilities,” insistence that disabled people who speak out in any way are “just craving attention,” and of course the fiscal conservatives and Libertarians who resent any penny spent on assisting us that comes out of their paychecks.

People who have positive feelings about disabled people and disability issues sometimes can’t imagine that aggressively hateful ableism really exists. It’s so foreign to their thinking that there is a tendency outside the disability community to discount our tales of horrifying ableism as overreaction or misunderstanding. While one must occasionally correct for hyperbole language, the incidents disabled people describe when they let their hair down and really share are quite real. And there are some true haters out there who have special, very intense little resentments directly aimed at disabled people.

I would love to see a compilation like this that not only catalogs online ableism, but categorizes it as well into its most popular themes.

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Two Ways To Improve Disability Journalism

It would be so nice if journalists would stop using weird synonyms for “disabled” … like handicapped, mentally challenged, and wheelchair-bound. We say it all the time, but they keep appearing in news stories. Just say “disabled” and leave it at that.

Now that we have that out of the way, there are two other ways journalists can improve coverage of disabled people and disability issues. These are, I think, a bit more important:

1. Always look into the potential systemic, structural aspects of seemingly individual stories.

Personal stories of adversity, struggle, and triumph are appealing, but a lot of the problems disabled people face have their roots in laws, policies, and practices that affect other disabled people, too. Yet, many stories about disabled people fail to even address ways that individual disability problems might be solved in more permanent, systematic ways. This reinforces the rather lonely and discouraging idea that dealing with a disability is a solo endeavor. It also gives cover to people and institutions that perhaps should be doing more to make life better for all disabled people.

Example: The story of an Austin, TX high school student with Cerebral Palsy who raised over $80,000 to install push-button automatic doors at his high school. It’s a legitimately uplifting human interest story, but a reporter might have asked why the school wasn’t paying for the modifications, since accessibility is part of schools’ responsibility under the Americans with Disabilities Act.

2. Never print or air a story about disabled people without talking to and quoting disabled people.

The principle here is “Nothing about us without us.” It is a phrase with a long lineage in the disability rights community, but it is just as applicable in journalism. Normally, reporters will at least try to get a direct quote from every individual named in a story, to get their perspective on the issue and not just another person’s impression of their perspective. When it comes to disability stories, however, the standard seems to slip. It’s quite common in stories about disabled people to never hear directly from disabled people. Instead it seems to be considered acceptable to have parents speak for disabled children or youth, and agency staff to speak for “their clients.” It is true that a few disabled people can’t speak for themselves, but that is a very small number if you allow for “speaking” through non-verbal or adaptive means. Most people with intellectual disabilities, too, have meaningful things to say about their lives and experiences. In fact, a reporter at times may be in a unique position to give a public voice to people who are, intentionally or not, often left out of discussions that have a direct impact on their lives.

Example: TV coverage of the Bilodeau brothers, the Canadian Olympic Freestyle skier and his brother, who has an intellectual disability. Frederick, we are told, is a huge fan of his Olympian brother Alex. On camera he seems like he could have meaningful, specific things to say, but he is never interviewed, and none of the reporters even mention any attempt to speak to him directly. This happened the same way over multiple interviews with the athlete and the rest of the family, over two successive Winter Olympics. There is every indication that Frederick absolutely does idolize his brother and loves watching him win. The point is that he has never voiced those feelings to the world, in his own words, and we don’t know why.

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Advocacy Or Fundraising ... Demanding Or Asking?

White House Student Film Festival honors Austin's Wheelchair Challenge story

Austin High School, Austin TX
(Via the Disability Visibility Project Facebook Page)

I thought about this story a lot yesterday ... not about the honored student-produced video, but rather what the video was about.

Why didn’t Archer Hadley, his parents, and his classmates petition the School Board to install automatic doors as a basic accessibility feature, to comply with the Americans with Disabilities Act?

Maybe they did. Maybe the fundraiser was a fall-back strategy after advocacy failed. Personally, I doubt advocacy was ever really considered. It seems like everyone involved ether consciously or unconsciously kept this whole matter squarely in the realm of a personal quest … inspiring, maybe educational, certainly not confrontational. It happens a lot.

Why do non-trivial numbers of smart, energetic disabled people like Archer choose to address systemic barriers with fundraising and “awareness” campaigns instead of advocacy? Sometimes they are deliberately diverted this way by people in power who would find an advocacy campaign embarrassing, awkward, and of course expensive. What interest me more are the cultural and emotional reasons. I can’t read Arthur’s mind, but I have some thoughts of my own about why things go this way so often:

- To some people, advocacy is energizing, but for others, it seems rude, ridiculous, or scary. For some people, fundraising and game-ish “events” for a cause are fun, familiar, and sociable, while serving a useful purpose. For others, these activities feel either like begging, or, conversely, like an excuse for well-off people to have a party. In other words, advocacy and fundraising come with cultural associations, and appeal in different ways to people with different personality types. I get the feeling that Archer comes from a culture that disapproves of public advocacy, while praising fundraising and awareness events.

- A lot of people can’t imagine solving a problem through legal or political avenues. Not just because they are intimidated, but also because changing “the system” seems impossible, and the efforts to do so feel futile. Getting your family, friends, and neighbors mobilized to raise a specific amount of money, on the other hand, is at least a lot simpler, and the results are more likely to be exactly what you wanted them to be, since you call the shots and there’s no need for negotiations or compromise. It’s why Bill Gates funds a charity to solve the worlds problems, instead of running for office. On a much smaller scale it may be why Archer saw a problem affecting himself personally, and chose a more “accessible”, person-to-person approach instead of trying to navigate a maze of bureaucracy, mostly likely having to settle for one only automatic door, or maybe reduced opening force on all the doors ... better maybe, but not best.

- I think a lot of teenagers with disabilities as significant as Archer's have a genuinely hard time fully believing deep inside that they have the “right” to full access and equal opportunity. I’m not suggesting their self-esteem is in the dumps … though for some it may be. I’m saying that a teen with so many very obvious physical impairments may well feel that being in everyone else’s debt and relying on kindness and generosity is just part of the deal. I felt that way when I was Archer's age. At the time I would have said it was just common sense, that someone “like me” couldn’t realistically expect everything to be open to me. Which is not to say that I didn’t want things to be better. Just that I couldn’t conceive of presenting the really big improvements as anything but humble requests.

How we choose to deal with the problems and barriers of disability says a lot about our culture, our personalities, and where we are in our journey with disability.

(Note: I originally have the young man's name as Arthur, which was a misread on my part.)

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Is Cross-Examination The Answer?

Local Disabled Handlers Concerned About Fake Service Dogs

Tulsa’s Channel 8, ABC - February 27, 2015

I’m ambivalent about this kind of news story. It is true that people who knowingly pass off “pets” as “service animals” make things worse for disabled people who rely on service animals. People are already primed to suspect anyone who isn’t obviously blind who has a service animal of trying to put one over on them. People who might think its harmless to fudge the issue should be reminded of the harm they do.

On the other hand, how common is this really? Since we’re not cross-examining everyone who claims their pet is a service animal, and many legitimate disabilities are invisible, how do we actually know there’s widespread cheating?

Plus, if we require tighter regulation and credentials for service animals, and empower basically everyone to demand at will to see a dog’s certificate or whatever, will that make things better for disabled people or harder?

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Throwback Thursday

A year ago in Disability thinking … Thank You Gail Collins.

The New York Times Columnist pushed for ratification of the UN Convention on the Rights of Persons with Disabilities.

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A Non-Soppy Disability Love Story

Walk down the aisle another amazing step on AuSable Forks woman's journey

Ben Rowe, Press-Republican - February 14, 2015

Here’s a rare sentimental disability story that I actually enjoyed reading.

I’ve written before about the mixed messages sent by stories of paralyzed people going to great lengths to “walk” down the aisle at their weddings. What bothers me most about them isn’t that some people want to do it. The real problem is that disabled people who choose instead to wheel down the aisle ... like they wheel everywhere else in their lives ... don’t get heartwarming newspaper stories written about them. Meanwhile, the people who do go to Herculean efforts to walk a few steps are portrayed as heroes, while their voices, and the stories of their everyday lives tend to get short shrift.

That’s partly why I liked this story about Michaela, a young woman who lives in my neck of the woods, who I’ve met and know a little bit. It helps that I know her, of course, and I’m pretty sure she doesn’t spend 24-7 pining after a cure. At any rate, she reserves at least some of her time and energy for actual living, working, and of course loving. The story starts with her walk, but quickly becomes about Michaela and Kyle. It doesn't ignore her disability, or minimize it, but puts it into context. The story is really about more than her walk down the aisle. It is about Michaela and Kyle’s relationship, affected and given unique shape by her disability, but in other ways quite typical.

The story is heartwarming without for a moment being maudlin. We hear more from Michaela and Kyle than we do from parents, therapists, or the journalist. These are rare qualities in human interest journalism focused on disabled people. It’s even more admirable from a small-town newspaper, when so-called giants of journalism regularly give us much worse.

Above all, I’m left with an important reminder, that these stories of “recovery” are also part of disability culture, in that they are important to many disabled people. The issue we sometimes have about these stories is how they are reported, and whose voices are and aren’t heard. The stories themselves are fine, and deserve to be told.

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Dog Video Of The Day

Disabled wiener dog gets a 3D-printed wheelchair

Bonnie Burton, C-Net - January 28, 2015

I’m not feeling very chatty today, so I figured I’d share this story and embed one of the videos.

Notice that the reporter doesn’t call the dog “wheelchair bound”, usually a go-to journalistic term for human beings who use wheelchairs.

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For What It’s Worth ...

PolitiFact dismantles Rand Paul’s claims about Disability.

They don’t address the social or political implications of his recent statements. They don’t try to judge either way whether certain kinds of disabilities are truly disabling or not. That’s good though. PolitiFact isn’t any more qualified to assess the experiences of different disabilities than Sen. Paul is. They are fully capable of that on strict statistics alone, Sen. Paul is wrong, and that’s saying plenty.

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Best Article On The ABLE Act

What you should know about the ABLE Act

Justin King, New America Foundation Weekly Wonk / Vox.com - December 19, 2014

Large kudos to Vox.com for posting the best article on the ABLE Act I have ever read. It accurately describes the problem the ABLE Act was designed to address, properly notes that the new law will probably help, but also explains the new law’s shortcomings. It seems like everything else I have read in the last couple of weeks has been either a completely uncritical fluff piece on how awesome it is that Congress passed the ABLE Act, or bitter and somewhat over the top denunciations of the law’s last-minute limitations. This article even describes exactly how the law itself is a better deal for higher income than lower income families and individuals … something a few Tweets and blog posts alluded to in dire tones in the lead-up to passage, but rarely explained.

Beyond this particular issue, I think it’s really important for the disability activist community to encourage high-quality reporting from mainstream news and opinion outlets on disability policy. Most disability stories come off as journalism-lite … lots of sugary flavor and zero calories.

(Hat tip to the Autistic Self-Advocacy Network).

Long Term Care ≠ Nursing Homes

The way America pays for nursing homes is a disaster. So how do other countries do it?

Sarah Kliff, Vox.com - December 14, 2014

Sarah Kliff, who is in my opinion one of the very best journalists on the health care beat, has a very interesting article at Vox.com about how countries pay for “long term care”. Those of us with disabilities and related to disabled people certainly know what a mess it is, but sometimes we don’t know why, and non-disabled people mostly don’t have a clue. Worse, it seems like even the social democracies of the developed world, who usually do human services better, don’t have long term care figured out either.

I hope we get a followup article to this one, because unfortunately, the article equates “long term care” with “nursing homes”. The title says it’s about paying for nursing homes, but the article is about long term care. They aren’t the same thing. Nursing homes is one model of long term care. Others include agency-based and consumer-directed home care, “assisted living”, “retirement communities,” and probably other models, too. It is very dangerous to keep equating the problem of long term care with it’s most outdated, expensive, and, frankly, most hated solution … institutionalization in nursing homes.

In fact, the woman who’s story Kliff cites, a woman with paralysis “from the waist down” is far more likely to need home care than a full-time nursing home. Plenty of people paralyzed “from the neck down” live in their own homes, too, with visiting care and personal assistance. In most cases, this more targeted type of care is at the same time less expensive and less restrictive. The CLASS Act, which Kliff also cites, would have helped with home care as well, and the Community First Choice program is helping in several states as we speak.

Again, this is all stuff that means a whole hell of a lot to people with significant disabilities, and virtually nothing to everyone else … even though it should be common knowledge to everyone. I hope to see more of this kind of work from Vox, and a bit more care in defining the scope of definitions and discussions.

The Best Stella Young Tribute

Dear Stella Young, the world has lost its fizz without you, love Benjamin Law

Benjamin Law, The Age - December 8, 2014

I have been really impressed with how the ABC (Australian Broadcasting Corporation) and other bloggers and news outlets have written about Stella Young after her unexpected death. I have seen barely a whiff of either “inspiration porn” or morbid fascination with the details of her disability. The ABC’s articles were loving and respectful.

Still, Benjamin Law’s article is by far the best tribute I’ve read so far.

Notes On A Vox Article

How Medicaid forces families like mine to stay poor: “You’ll have to get rid of everything.”

Andrea Louise Campbell, Vox - December 9, 2014

It is important to highlight really informative articles on disability that appear in mainstream publications. The general public knows very little about what life with a disability actually entails. Unfortunately, most stories about disability in newspapers, magazines, and news programs focus on individuals and emotion, at the expense of information on broader policy and how it works … and fails … for disabled people across the board.

This Vox.com article is very informative and as far as I can tell, accurate. More importantly, it provides a very good explanation of the income “trap” that so many disabled people find themselves in, because essential supports are part of income-tested programs for the “poor”.

A few thoughts on the article:

- The article is excerpted from the author’s book. It mentions the Affordable Care Act, which suggests that it is fairly recent.

- I was surprised to see no reference to the ABLE Act, a bill very likely to be passed and signed into law in the next few days that would provide at least a partial way around the asset limits described in the article. Unfortunately, recent amendments to the bill might leave the article’s subject, Marcella, out entirely, if she was over 26 years old at the time of her accident. (The article doesn't mention her age, but suggests she was a young adult). If nothing else, the amendment is a good example of how the “social safety net” grew in such a piecemeal way … with lots of arbitrary limits and loopholes added simply to reduce cost.

- Ms. Campbell takes extra care to explain how income and asset “tests” reward low income rather than high. She implies that most sensible laypersons will find this counter-intuitive and strange. It certainly is maddening, but I don’t see why it’s so surprising. Almost all social assistance in the United States is based on economic need, rather than neutral characteristics like disability alone. It’s the way most American voters think they want it … help for people who need help, not for people who don’t. If you make more money, you need less help. That’s the idea anyway.

- Personally, I would prefer a lot less means-testing, even if that meant relatively well-off disabled people getting help, especially for supports almost nobody can afford, like home care and assistive technology. Barring that, though, I think the system could be made fairer and more humane just by revisiting where all the income and asset limits are set, and comparing them to current cost of living in various regions. We don’t necessarily need to overturn the whole system. Making in more economically functional for individuals and families would go a long way.

Losing A Teacher

"Remembering Lucy Gwin”

Steven E. Brown, Disability Visibility Project - November 10, 2014

“Mouth” magazine was one of my first introductions to disability culture and what we might roughly term “radical” disability philosophy, back when I was a new staff member at a Center for Independent Living. Along with the somewhat similar “Disability Rag” / “Ragged Edge", Lucy Gwin’s “Mouth” is where I discovered that disability rights and awareness are about more than a few ramps and superficial acceptance. In the newsprint pages of these two pre-Web journals, I learned:

- Why, exactly, nursing homes and other institutions are terrible, not just distasteful. They not only rob residents of their full humanity, they are an outdated, inadequate, and inefficient way to meet the needs of elderly and disabled people who need some help with everyday tasks. I first read well-researched details about all this in the “Mouth”.

- How the experiences of physically disabled people are similar to those of cognitively or mentally impaired people … surprisingly similar to me, at the time when I read about it.

- The various “Catch-22” traps all sorts of disabled people face daily … For example: Either you’re too disabled to be trusted to run your own life, or you aren’t disabled enough to get services you need to function with the disabilities you do have.

- That truly horrific injustices happen all the time to disabled people, not just small indignities and embarrassments.

- That the sheer absurdity of ableism is it’s key weakness, and laughter is one of our most effective weapons.

The “Mouth” was one of my textbooks, which I guess means that Lucy Gwin was my teacher. I suspect there are hundreds, maybe thousands of other disabled people, and allies, who can say the same. I’m so sad that she’s gone.

Two Views Of Autism

Autism rates aren't actually increasing

Julia Belluz, Vox.com - August 28, 2014

"What's more, autism spectrum disorders — which causes social impairment and stifles people's ability to communicate — still represents significant suffering globally. 'The burden of disease caused by the disorders is not only high in children but continues throughout the lifespan into adulthood,' says Baxter. In 2010, autism spectrum disorders caused 7.7 million person-years of healthy life lost, around the world."

Two of Vox.com's strengths are explaining things, and dampening hysteria with actual information. I am glad to see them take on the supposed explosive growth of autism. I would love even more for Vox.com do a followup addressing the radically different conceptions of autism that most autistic people, and those of us who read and write disability blogs know about, but most people don’t.

“Suffering” and “healthy life lost” provide an unusually clear picture of the divide between two fundamentally different ways of understanding autism.

The traditional, medical view is that autistic people "suffer from” autism. And because autism apparently means autistic people have no personalities or points of view of their own, families suffer even more, from the stress and anguish of having kids with autism. If they really thought about it, most people would probably say that “autistic” and “healthy” are incompatible concepts, and that autism is one of the most dread of diseases, the very opposite of, "I don't care if it's a boy or a girl. I just want it to be healthy!"

The Neurodiversity or Autism Acceptance views of autism do not deny that autism exists or that it is difficult. Nor do they deny that there is suffering. The difference is where the suffering is thought to come from. In this alternative view, autism is not always inherently painful or debilitating. Rather, it is non-autistic people's lack of understanding of autism and, their pathologizing approaches to it, that cause autistic people to suffer most.

I wonder if and when these different paradigms of autism … and of other disabilities, too … will become more widely known. It seems like an important thing to at least be aware of.

When Headlines Get It Wrong

Disability keeps man from riding roller coaster

Susan Hogan, Channel 12 WPRI - August 25, 2014

Let's be clear, shall we? Six Flags and their rules kept the man from riding the roller coaster, not the man's disability. The disability had something to do with it, but it was the company's decision. Whether or not the decision was unjustified is another question. I suspect they are a bit too cautious, particularly when partial leg amputation imposes relatively little in terms of practical impairment. But either way, it was an institutional decision, not a natural consequence of disability. That is a huge conceptual difference that people often get wrong get wrong all the time.

Oscar Pistorius' Disability Defense

Oscar Pistorius Judge Says She Will Render Verdict on Sept. 11

Leizl Thom, ABC News - August 8, 2014

I would be more sympathetic if Oscar Pistorius' defense was that he, Oscar, is easily startled by sudden loud noises, or that he, particularly, feels physically vulnerable because of his double amputations. But that doesn’t seem to be what he and his lawyer are saying. They seem to argue that Pistorius feels extra vulnerable because of his disability ... as any amputee would feel. Instead of saying, “This is how being a double amputee affects me”, he’s saying, “This is how double amputees are”.

Aside from that, the argument may not work either way. The judge may simply not believe that Pistorius’ feelings of higher vulnerability were severe enough to justify him shooting that gun, apparently without first shouting out, “Who’s there?”, or “I’ve got a loaded gun!” And in the South African judicial system, there’s no jury, just the judge. I wonder if judges in this position are allowed to take into account the effects of precedents? Can she, for instance, rule against Pistorius partly because she’s concerned about giving license to kill to everyone in South Africa who has a physical or psychological injury … who isn’t 100% fit?

I don't have much interest either way in whether people "use their disability as an excuse" for bad behavior or failure. Sometimes disability is a factor in these things. Sometimes it isn't. Sometimes disability helps explain behavior, without excusing it. It depends on each person and their individual sum of experiences. What bothers me is when disabled people invoke and use broad stereotypes of disability in order to take the onus off themselves ... to paint themselves as typical rather than unique.

By the way, for what it's worth, I think the article is a fine example of impartial journalism. It states the arguments being made, without drawing broader conclusions or moral distinctions, as I have just done.