John Elder Robison Disappoints in Interview

John Elder Robison may be the second-most-famous autistic person alive now --- Temple Grandin, of course, being the most famous --- and, as such, is treated as something of an authority on autism. He sits on a 30-person scientific review board at Autism Speaks, which makes recommendations about which research to fund, and he is also a bestselling author (Look Me in the Eye, and now Be Different) and speaker.

(In this interview with NeuroTribes blogger Steve Silberman, Robison says that part of the reason he wrote his second book was because people kept asking him how he was able to be successful, and whether he had any advice or wisdom to impart that would help other autistic people achieve similar success).

So I was quite disappointed when I came to this part of the interview:

Silberman: Are there any ways that society could be reformed to make it a more comfortable and supportive place for autistic adults?

Robison: I don't think that's a realistic question, Steve. We represent one percent of the population. Asking what 99 percent of the world should do to make it a better place for that one-percent member --- that's verging on science fiction and fantasy. People who get into that way of thinking become militant about demanding their rights and thinking about what the world owes them. Frankly, I don't think the world perceives that they owe us one single thing.

If you're a guy with severe autistic disability and you can't talk, you cry out for compassion by your very existence. It's obvious when people look at you and listen to you. If you're a person in a wheelchair, nobody can reasonably argue that you should just get your ass across the street. But when you're a person like me and your disability is principally with social functioning, and at the same time you have good language skills, people are going to dismiss you as a jerk if you don't learn to fit in. That's the hard truth. To suggest that someone like me should ask for accommodations is, in my opinion, setting that person up for failure. Because when your language skills are good, there's no external sign of disability, and you act weird --- and then you make demands on people for how they ought to change to accept you? That's a non-starter.

It looks like Steve Silberman was also taken aback by this answer, because he actually starts arguing with Robison about it for a while:

Silberman: But other minority groups have demanded reasonable accommodation from society, such as laws against discrimination in the workplace. Black folks did it by launching the civil rights movement, many other disabled groups have done so, and gay people --- like your brother Augusten [Burroughs] --- have done it, too.

Robison: The race thing is completely different. You can look at someone and right away know if they're black or white. There's been a huge gay rights movement, but look at what there is already for gay accommodation. I don't think there was ever an issue of people refusing to hire gay people in most workplaces.

Silberman: Well, that isn't true. I'm not trying to argue with you ---

Robison: In the autism world, people look at your behavior and say, "He's acting like a jerk, I'm gonna treat him like a jerk." If you're a gay guy and you're acting like a jerk, people think you're a jerk; but if you're a gay guy and you're nice, people think, "He's a nice guy."

Silberman: Not always, but I hear what you're saying. [changes subject]

I think Robison misses the point about a lot of things in this exchange. When he's trying to explain how the neurodiversity movement is fundamentally different from, and less reasonable than, past liberation/civil-rights movements, he greatly overstates mainstream society's willingness to do what those past movements asked of it.

He also overstates the degree to which racism and homophobia aren't still entrenched in mainstream (white, straight) society today. Obviously things are better than they were, but Robison is flatly wrong when he says that today, a gay man can be confident that he'll always be judged according to his personal merits, and not by the fact that he's gay (or a black man by the color of his skin). He's also flatly wrong when he says that gay people were never barred from any form of employment because of their sexuality. (What does he think "Don't Ask, Don't Tell" refers to, one wonders?)

I also have serious problems with this:

If you're a guy with severe autistic disability ... you cry out for compassion by your very existence.

The poetry of this image aside, I find its implications --- that autistic people (or other people with severe disabilities, however we're defining "severity" today) don't need any more rights, legal protections, etc., because other people will automatically take pity on them and give them whatever they need --- disturbing.

They disturb me because I know differently. And it makes me angry, given the extent to which abuse and neglect by caregivers is A HUGE PROBLEM for people with disabilities, to hear that we cannot possibly be abused, neglected, impoverished, or anything else bad because our mere existence appeals so urgently to the better angels of human nature.

Anyway, apart from that, it also bothers me that his argument is essentially, "But it's too hard to change society! We can't ask *THAT* of them!!" and then, when faced with examples of other minority groups who've done just that, and achieved some success, he seems to think ... I don't know what. That society has already adopted those reforms, and since it hasn't adopted the reforms neurodiversity/disability activists are pushing for, that those reforms must be less reasonable than the reforms already (grudgingly, laboriously, slowly, incompletely) adopted?

There's also the fact that his whole "the 99 percent cannot be expected to change the way they do things for the benefit of the 1 percent" essentially amounts to, The Devil take the hindmost! Which is pretty much the way we do things here in Capitalismland, but which I think is a really horrible way to run a society. Horrible for everyone, not just autistic people.

Which brings to mind the last big, philosophical thing that bothered me about his answer. He assumes that the reforms neurodiversity activists want would only be beneficial to autistic people, and would either do nothing for, or actively inconvenience, everyone else. I don't think that would necessarily be the case; I think lots of people would benefit from a more flexible, accommodating workplace or an improved system of caregiving or more walkable communities or whatever else. People who aren't disabled might be able to stay afloat in the current social/economic arrangement; that by no means implies that they're thriving under it, or that their lives couldn't also be improved by tweaking said arrangement. After all, "society" isn't this immutable thing like the laws of gravity or thermodynamics; it's something people make, and can remake as needed.

Qualified Candidate Barred From Job; U.S. Government Sues Employment Agency

My heart really goes out to Jason O'Dell; he and I seem to be in similar circumstances.

He recently applied for work as a lab technician in Frederick, Maryland, using an employment agency called Randstad US. Everything had been going pretty well --- Randstad had decided that he was exceptionally well-qualified for this particular job, so they "fast-tracked" his application; the company he had applied to had also expressed interest in hiring him --- until O'Dell let it slip that he had Asperger's.

When that happened, the position he had seemed about to get seemed to evaporate. His contacts at Randstad were telling him it had "been put on hold," but really they were continuing to recruit other candidates, and eventually filled the position with someone who was not Jason O'Dell.

In response to this, the U.S. Equal Employment Opportunity Commission is suing Randstad for discrimination --- in pulling O'Dell out of consideration for employment right after he told them about his disability, they violated the Americans with Disabilities Act's prohibition against employers (or employment agencies!) discriminating against qualified people with disabilities in job application procedures, hiring, promotion, pay, training, firing or any other aspect of employment. They're asking for back pay, compensatory and punitive damages for O'Dell, and revisions to Randstad's employment policies to make the kind of discrimination O'Dell experienced Officially Against The Rules.

Here is the relevant part of the ADA:

Sec. 12112. Discrimination

(a) General rule

No covered entity ["covered entity" meaning an employer, employment agency, labor organization or joint labor-management committee] shall discriminate against a qualified individual [someone who can perform the essential functions of the job with reasonable accommodations] on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.

(b) Construction

As used in subsection (a) of this section, the term "discriminate against a qualified individual on the basis of disability" includes

(1) limiting, segregating, or classifying a job applicant or employee in a way that adversely affects the opportunities or status of such applicant or employee

... and here's a handy little page about employment law; it tells you what your rights are under the ADA, and what you can do if you think they've been violated.

The EEOC also mentions in its press release that fiscal year 2010 has been especially bad for discrimination in employment: they had 99,922 claims, of which 25,165 were disability-related. That constitutes an increase of 17.3% over the number of disability claims filed in fiscal 2009.

I hope they win their suit, and that O'Dell gets those damages ... although even more I hope he manages to get a lab job somewhere!

Stop, Look and Listen --- It's Autistics Speaking Day

First, a little background information:

Today, there's something going on called Communication Shutdown, in which people are encouraged to abstain from Facebook and Twitter all day to 1) raise awareness of autism --- while users are offline today, their pages will display an icon that explains why they're offline; 2) simulate what it's like being autistic, i.e. being cut off from the wide world of social communication; and 3) raise money for various autism charities around the globe via participant donations.

(For a brief, but really enlightening, discussion of why autism charities are problematic, see this post on Cripchick's blog).

Lots of autistic bloggers, Facebook and/or Twitter users are annoyed with this autism-awareness campaign, partly because abstaining from social media isn't very enlightening as far as what it's like to be autistic.

Social media and the Internet actually represent ways autistic people connect with others, to a greater extent than we can in our non-digital lives. The Internet has allowed us to meet other autistic people around the world, talk about issues that are important to us, commiserate and empathize with each other over things that non-autistic people --- however kind or well-intentioned --- just don't understand. Social media can enable us to maintain friendships across distances that we might not be able to cross in the physical world, since autistic people are often unable to travel as freely as non-autistic people to whom driving a car, riding a bus cross-country or flying on an airplane and navigating a busy airport do not constitute serious challenges.

So, for some autistic people, a better awareness campaign would be something like Corina Becker's idea: Autistics Speaking Day, in which autistic people take to their blogs, Facebook pages and Twitter accounts to write about what it's like to be autistic.

Let us use this day to flood every social networking site we know with our accounts, our experiences, what it feels like to be Autistic.

Every sensory pain, every communication frustration, every account of being bullied, every wondrous moment, every peaceful calm, every instant of understanding and joy.

Let them hear our voices and take back the Autism community.

Let us speak.

Let us tell you what it's like to be us.

And that, would be true Autism Awareness.

* * *

For Me to Speak, You Have to Listen.

Sometimes, people with disabilities need more space than people without disabilities do. This applies not just to physical spaces --- aisles, car and bus interiors, seating, sidewalks, doorways, hallways, etc. --- that need to be broad enough to accommodate wheelchairs, walkers, scooters, service animals, or other mobility and assistive devices, but also to interpersonal spaces.

A conversation can be accessible or inaccessible, just like a building can be. Just like there are places where only people who can do certain (physical) things --- climb stairs, squeeze through narrow openings, open heavy doors, etc. --- can go, so are there social and political environments where only people who can do certain (verbal, mental, emotional) things can participate.

You have to be able to speak, loudly and rapidly. Most of the time, you'll need to be able to control your need for pauses, for breathing or thinking space, so that you can get a complete thought out in one piece. You have to be able to intellectualize --- not to get so upset that you become incoherent, which can be hard if the issues being discussed have a direct bearing on your life. You also can't be too intellectual, or you'll lose your audience. You can't talk for too long. You can't be too abrupt. You have to be able to see where the conversation is going, as if it were a living thing that could walk, float, flutter, slither or ooze its way around a room, and adapt whatever it is you want to say to fit what your audience expects to hear.

It's the speed of group conversation that's hardest for me to deal with, for a lot of reasons. One reason is that, since I don't hear tones of voice or anything "meta" to the actual words being spoken (I can infer sarcasm from context --- say, if I know the person and they are saying something diametrically opposed to what I know they believe --- but my first instinct is always to take things literally), I cannot tell the difference between a silence that signifies that someone has finished speaking, and a pause in the middle of a block of speech. I distinguish them by waiting to see if the person resumes speaking; if they never do, I decide that the way is clear for me to respond.

Of course, in all the time it takes me to do this, someone else has already perceived the opening and begun to speak.

The other big problem I have with speaking, and responding to other people's speech, is that I don't think in words. It can take me a very long time to convert what's going on in my head --- which is sometimes a single still image, sometimes a slideshow of images, sometimes just a jumble of colors and shapes, moving and changing, and sometimes looks like nothing at all, even to me on the inside --- into coherent, grammatically-correct, meaningful language. It is somewhat easier to effect this transformation in writing, where what I have already written stays there for me to read, to orient myself and build on, while in speech all the progress I've made evaporates into the air, leaving me nothing to work with. Most importantly, though, in writing I have the luxury of waiting as long as it takes for my thoughts to solidify into nameable concepts.

Time is not on my side when I'm trying to participate in a group discussion. I can't wait for my thoughts to reveal themselves to me in communicable form, but neither can I describe what I see as it appears to me; most of the things I see elude description, or, if they can be described, defy interpretation. The thing I can do earliest is perceive an absence; sense something that is not being addressed. I can't always see what's missing, but I can usually tell that something is.

When that happens, I've learned to tell people to wait.

* * *

Other Autistics who are Speaking today:

Bev at Square 8 says, "Squawk?"

Corina Becker has posted a roundup of her own past writings about autism

The Untoward Lady writes about being autistic and in love

Amanda Forest Vivian has two posts, one about how 1) passing as non-disabled can be a mixed blessing and 2) therapies that are primarily geared toward turning non-passing people into passing people are misguided; and one about "Regular Person Listening Day"

Kat Bjornstad has a link roundup, and a discussion of her experiences starting a blog and running an Autistics Speaking Day Facebook event

Rachel Cohen-Rottenberg at Journeys with Autism speaks her mind, and also speaks from her heart

Clarissa wants to know, "How Does Silence Support Autism?"

Astrid van Woerkom sometimes loses the ability to speak

Savannah Logsdon-Breakstone has reposted several of her poems --- "Articulate", "Analogy > Simile > Metaphor and Me", "Feet", "Poetry and the Vision of Thought", "To Inspiration", and "Allied, Unallied, Re-Allied" --- and an "accessible interpretation" of her poem "To Inspiration"

Leah Jane at The Quixotic Autistic talks about a project she's been working on with her local autism club

Clay Adams reposts an essay by Ari Ne'eman

(That's not all, not by a longshot. Kat's link roundup has more, and Sunday Stilwell at Adventures in Extreme Parenthood and Kim Wombles and Kathleen Leopold at the Autism Blogs Directory all have link roundups of their own)

Ari Ne'eman Interviewed at Wired.com

Ari Ne'eman, founding president of the Autistic Self-Advocacy Network and now a member of the National Council on Disability, spoke to Wired.com back in July, and they have now posted the interview on their Wired Science blog.

Here are some excerpts from the interview that I thought were particularly awesome:

Wired.com: Many Wired readers work in the tech and software industries. How could they help improve the lives of autistic people?

Ne'eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily --- so-called augmentative and alternative communication [AAC] --- we'd have a vast improvement in the quality of life for autistic people and their family members.

We've already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won't pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.

Second, I'd love to see research into ways of using social media to improve access for disabled people. If there was some kind of web-based tool or mobile app that enables people to flag buildings with "very good" or "very bad" access, it could spur a lot of positive social change.

Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors. The internet has proven to be very important for autistic people, because it's given us a chance to connect with each other and start to form a culture of our own. We've barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education across the whole life span of autistic people --- not just when we're kids.

I love Ari's ideas about assistive technologies --- I would never have thought of using an iPad or iPhone as an AAC device*, but now that he suggests it, I can imagine it working well for that. I'm also enthusiastic about the web-based accessibility- and caregiver-rating. The accessibility-rating for places could speed up the currently-very-slow process of getting city governments to respond to people's complaints about poor accessibility through the Internet's ability to gather a critical mass of people calling for a given thing much more quickly than traditional, localized grassroots organizing. (Darned if I know how mobile devices and apps could help with education and employment, though, apart from their utility as AAC devices that he already mentioned).

(I can pretty easily imagine why Medicaid officials --- assuming they know about AAC apps for iPad/iPhone, which maybe they don't --- would be loath to use Medicaid funds to cover those things, even if they are cheaper and more practical: can you imagine the scandal if some deficit hawk in Congress were to discover Medicaid funds being used to provide iPhones to poor people with disabilities? The horror!)

More Ari:

Wired.com: Some of your critics suggest that as a "high-functioning" person with Asperger's syndrome, you present an overly rosy picture of life on the spectrum. You work in D.C., do a lot of public speaking and networking, and are obviously capable of things that someone who lives in a wheelchair or can't speak cannot do.

Ne'eman: I know quite a few people in D.C. who use wheelchairs, and I know people who use AAC devices and work in public policy. Some of my mentors fall into those categories. So while I'd agree that there are many things I do that some other autistic people can't, I wouldn't say that it's the fact that I'm not a wheelchair user or an AAC user that makes that the case.

I recognize that I'm fortunate in many respects and am able to do things that some other autistic people can't do. But I would also point out that these things didn't --- and don't now --- come easily to me. I've been fortunate to be able to count on the inclusive culture of the broader disability-rights movement to help support me.

There's a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don't know anyone who thinks that way. Most of us have had deeply personal experiences with social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it's much more productive for us to focus on how we can improve people's lives than to keep presenting people as pitiable burdens.

No more pity. It doesn't help anybody.

Many of the bad things that autistic people struggle with are things that happen to us, rather than things that are bad about being autistic. Why is that an important distinction? I remember reading a blog post from a parent who pointed to two news stories. One was about a mother who had murdered her autistic child because she couldn't deal with the fact that he wasn't normal, and the other was about a school aide who had abused a child. And the blogger said, "This is what autism is like. That's why we need to find a cure."

I find that kind of thinking despicable: One would think the fault there isn't with autism, but with abusers and murderers! As long as we confuse bad things that happen to autistic people with what it means to be autistic, we're not going to be solving the problems that autistic people face in any meaningful way.
...
Wired.com: Though you criticize groups like Autism Speaks for focusing on a cure, if someone offered you a pill to wake up tomorrow without autism, would you take it?

Ne'eman: That's an intensely silly question. How can I draw a line around one part of my brain and say this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.

As a society, our approach to autism is still primarily: "How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?" The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it's a silly idea around autism. What if we asked instead, "How can we increase the quality of life for autistic people?" We wouldn't lose anything by that paradigm shift. We'd still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.

But the current bias in treatment --- which measures progress by how non-autistic a person looks --- would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

*Partly because I can speak, and thus don't need to spend a lot of time pondering AAC, but mostly because I am kind of a technophobe and don't use a mobile computer; I don't always grasp everything they're capable of doing.

New Blog Feature: Executive Summaries

Stephanie Lynn Keil left a comment on this post at FWD/Forward that I think raises a very good point: long, densely-written blog posts are inaccessible to people with some kinds of cognitive disabilities.

As I was reading her comment and nodding along, it occurred to me that I might be one of the writers whose style prevents Stephanie (and probably others) from reading many of my posts! My posts can get very long, and I tend to write long, confusing sentences.

Also, my posts sometimes change their focus as I'm writing them; it can take me hours, days, or even weeks to write one post, so by the time I reach the end of writing one of my longer posts, I can hardly remember what I was talking about when I started writing the thing. I imagine the reader probably feels a similar confusion!

So, I've decided I will start doing short (shooting for 1-3 paragraphs) Executive Summaries of my longer, more information- or theory-dense posts.

Some of these will show up as separate posts (for any series of posts, I think it makes the most sense for the Executive Summary to cover all posts in the series, and be included in the series as a separate post), but most will be tacked on to the beginning of posts like an abstract.

If you're using a feed to read my blog, this might mean that you get spammed with wave after wave of old posts to which I'm adding Executive Summaries, so if you want to avoid having your reader jammed with everything I've ever written, you might consider taking me off whatever feed you're using.

A Good Kind of Autism Awareness

EXECUTIVE SUMMARY: A business columnist for my local newspaper has written a column urging employers to think about hiring autistic workers. She starts out by describing the good things about autistic workers: we're diligent, honest, thorough and don't mind doing repetitive tasks. Then she goes on to mention how badly autistic people need jobs: many of us can work, but have trouble convincing prospective employers to hire us, and, at the same time, many of us are ineligible for disability benefits or services. I appreciated seeing an autism-awareness article in the mainstream media that focused on autistic adults, and quality-of-life issues, rather than the usual hype about the epidemic of autism among schoolchildren.
_____________________________

In honor of Autism Awareness Month, Kansas City Star workplace columnist Diane Stafford has written what I think is actually a really helpful article!

Since the main focus of her column is jobs and job hunting, she's decided to raise awareness of a) the great difficulty autistic people face in getting hired, even when they can work, and b) the benefits to prospective employers of hiring autistic workers.

Pool of Talent Shouldn't Be Overlooked
by DIANE STAFFORD
The Kansas City Star

Do you need a worker who pays attention to detail? Who will do tedious data entry? Who won't waste time gossiping?

You might find that you need someone with autism or Asperger's syndrome.

This is National Autism Month. Advocates have geared up to share sobering statistics about the increasing numbers of children with the diagnosis, 1 in 110.

Adults with autism or its milder form, Asperger's, have a hard time finding jobs these days. What will the jobless rate be for that group when the children who have autism try to become employed?

"As it is now, lots of people with autism or Asperger's are looking for full-time jobs, but their gifts are not recognized," says Sean Swindler, director of community program development at the Kansas Center for Autism Research and Training.

"Our challenge is finding jobs that fit them."

Swindler tells of a successful job placement: A man with autism works in a bank, running cash from the tellers' windows to the vaults.

"He deals in very black-and-white thinking," Swindler explains. "He's absolutely honest. He has very strong attention to detail. When he's handed the money it will go into the vault. Always."

Others are great at computer work.

But when advocates for hiring such individuals visit with employers, they often run into stumbling blocks.

Groups such as Swindler's try to educate.

"People with these disabilities who are leaving school now are not expecting to be in sheltered workshop environments," Swindler says. "They're expecting to be a full member in the community, the way their education has prepared them to be."

But vocational rehabilitation money, which funds job coaches who train and place people with disabilities in the workplace, is in desperately short supply, a victim of pared-down state budgets.

"We have people on the waiting list for seven years," Swindler says of those wanting job support services. "They sit in their parents' houses for years, losing all the skills they were taught in school."

Furthermore, he notes, about half the people with Asperger's or autism don't qualify for state-funded disability services, "so they're completely on their own in the job market."

In a tight job market, it's hard to advocate for special cases, but it's something that must be done, or lots of tax dollars are wasted and talents lost.

The article is not perfect --- it does perpetuate the myth that there are a lot more autistic children being born and entering school now than there have ever been before (when really they are just getting diagnosed earlier and at higher rates), and hints that some sort of crisis may be brewing when these aforementioned hordes of autistic children grow up and begin to apply for jobs --- but it does a great job of calling attention to a real problem that lots of autistic adults have (though it should be pointed out that the actual unemployment rate among autistic people is, while still higher than the unemployment rate for the general population, probably not as high as most studies estimate it, since those studies tend to select participants who were diagnosed with autism at younger ages --- sometimes in childhood --- and also tend to recruit through disability programs, both of which things are less likely to be true for people whose ASDs do not greatly impair their ability to find jobs) and that much mainstream Autism Awareness campaigns ignore, in favor of pushing for earlier, more intensive behavioral treatment.

Ack! I Forgot to Blog Against Disablism Yesterday!

Yesterday was the first of May, which had two immediate associations for me: May baskets and "Wolverine." But it was also Blogging Against Disablism Day, which I hadn't realized until I got on the Internet last night.

I've never participated in one of these mass blogging days before, since I usually can't think of anything to say on the topic when they're called, but this time I've got some disablism against which to blog.

First, there's the sidelining of the Community Choice Act, as ABFH has also mentioned in her BADD post. The Community Choice Act (H.R. 1670, S. 683) would amend Title XIX of the Social Security Act to remove what ADAPT terms the "heavy institutional bias" of its coverage rules for long-term care.

The act would revise Section 1902(a)(10)(D) of the Social Security Act (which currently just says that a state plan for medical assistance --- like, say, Medicaid --- should "provide for the inclusion of home health services for any individual who, under the State plan, is entitled to nursing facility services") to include "community-based attendant services and supports" as another alternative (besides the in-home care already specified) to institutionalization. It would also add a section detailing the regulation and oversight of such programs. (One of the features of that proposed section that intrigues me the most is its call for each state to create a Development and Implementation Council --- made up primarily of elderly and disabled people themselves --- to make sure the program works as it should).

Since one of the Obama administration's biggest priorities has been health-care reform, and since strengthening Medicaid had already been part of that agenda, you'd think the Community Choice Act would be part of that. Yet when a delegation of ten ADAPT activists met with a group of officials including Nancy-Ann De Parle, Director of the White House Office of Health Reform; Jeff Crowley, Director of the Office of National AIDS Policy and disability-policy advisor; Henry Claypool, Director of the Office of Disability in Health and Human Services; and Mike Hash, coordinator of joint White House-Department of Health and Human Services reform efforts, the activists were told that the Community Choice Act was not a priority for the current wave of reforms.

From the ADAPT Action Report of April 27th:

The administration stated that its only commitment currently is to extend insurance to the people who are uninsured, and that the people in nursing homes and institutions would need to continue to wait until an unspecified time in the future when it is proven that the health care reform worked.

Hearing that, 500 ADAPT members gathered outside the White House, chanting and holding signs and banners. Some handcuffed themselves to the fence, and all were there in defiance of a police order not to protest on the sidewalk or near the fence.

91 protesters were arrested.

On the following day, the protest was moved to Capitol Hill, where activists blocked off Independence and Constitution Avenues and crawled up the Capitol steps.

99 were arrested on that day.

On the 29th, ADAPT and SEIU held a joint rally in Upper Senate Park, at which Community Choice Act sponsor Sen. Tom Harkin spoke.

(All photos by Tom Olin, available online here)

I also have an example of disablism at the local level, in the publicity campaign for a bill that's been kicking around the Kansas legislature for a few months now.

Dubbed "Kate's Law" after Olathe veterinarian and Kansas Coalition for Autism Legislation founder Michael Wasmer's young daughter, the Accessing Autism Services Bill (H. B. 2367, S. B. 12) would require health-insurance policies to cover autism treatments, particularly ABA, which had previously been denied coverage under a lot of plans due to its "experimental" status. Currently, the House version of the bill is pretty much dead in the water, having failed to win enough votes to be pulled out of committee and into general debate. The Senate version was tabled late in January; Senate Financial Institutions and Insurance Committee chairwoman Ruth Teichman cited the bad economy and a lack of information about the potential economic effects of expanding insurance coverage.

I have no problem with the law itself, and, indeed, think that whatever services people decide they need should be accessible to them. No, my gripe is with the oft-raised specter of Dire Consequences if any autistic child grows up without having had extensive behavioral therapy.

Here's an example of such scaremongering, from an April 28 Kansas City Star article:

Autism is a developmental disability that affects 1 in 150 children, typically by age 3. Autistic children have problems making eye contact. Language skills are stunted. Interpersonal relationships become difficult. Left untreated, autism can affect a person's educational and employment opportunities.

There's no cure, but early intervention can teach autistic children the skills they need to lead productive lives.

Without therapy, many severely autistic people end up in institutions or relying on the government for help. The Autism Society of America, however, estimates that two-thirds of the cost of lifelong care for an autistic person can be eliminated through early therapy.

This is disablist rhetoric for a couple of reasons. The first reason should be fairly obvious: the article is saying that, without "treatment" of a certain type and duration, an autistic person's life will not be "productive." (In an aggressively capitalist, bottom-line-obsessed society like ours, such a prediction carries the additional connotation of moral worthlessness). The person is doomed to grow up a "useless eater," costing his family, state and country money.

Besides assuming the worst possible outcome, this line of argument also objectifies the autistic person. Nowhere are hir thoughts, feelings or desires mentioned, and hir (squandered) potential is alluded to only in bare economic terms. Hir life is discussed entirely in terms of its financial impact on the state. The moral imperative presented in this argument therefore has nothing to do with the autistic person hirself, but instead deals with minimizing the economic damage this person does simply by existing as ze is.

Finally, there's the disablism inherent in a political and economic system in which advocacy groups feel like they have to prophesy doom to get assistance from the government. Instead of saying, "Hey, some families want this, can we help them get it?" advocacy groups like Autism Speaks and the Kansas Coalition for Autism Legislation feel they have to say, "Without this, one in every 166 150 100 children in preschool now will grow up to be a DROOLING VEGETABLE and bankrupt their family! The economy will collapse, and there'll be RIOTING IN THE STREETS!! FUND THIS NOW!!!!"

Where Neurodiversity Meets Feminist Theory (Part I)

There's an interesting article by Amherst College's Kristin Bumiller in this past summer's issue of the University of Chicago's women's-studies journal Signs, titled "Quirky Citizens: Autism, Gender and Reimagining Disability."

It's a long article, but it still seems to jump around a lot between subjects. That's one of two major gripes I have with this piece, that once Bumiller gets deep enough into a topic to say really interesting things about it, she moves on. (The other gripe I have is with her tendency to depict the neurodiversity movement in what I think are overly broad strokes, which might be remedied by providing more quotes to back up assertions about what neurodiversity is, and by acknowledging controversies within neurodiversity where they exist. It would be really hard to do all that and have something short enough to have much of a shot at publication, though, so I can hardly blame her for oversimplifying the stuff that's not part of her argument).

The article is kind of complicated, narratively and structurally: she seems to tell the story of the history of autism, and the slow change in attitudes toward it, but at the same time she takes frequent breaks to discuss questions of gender as they arise. Since she does not advance a single, sustained argument but instead jumps around to look at a bunch of different topics, my responses to (some of) her points will be similarly scattershot.

The most interesting thing that stuck out to me was her categorizing of the different strategies of integrating autistics into society: she draws a distinction between "normalization" strategies that seek to bring marginalized groups more in line with the majority group (and thereby enjoy a wider range of social privileges) and "antinormalization" strategies that, rather than make it easier for more people to act like the standard white, male, middle-class person, try to make society more tolerant of differences.

Here's Bumiller explaining the rationale for "normalization" strategies:

Feminist theories have emphasized how in modern capitalist societies the privileges of citizenship are contingent on one's ability to embody the norm. In fact, citizenship often defines the primary dimensions by which we measure normality; the good citizen is an avid consumer in the market, makes appropriate demands on the state, and conforms to conventional family forms. The disabled, who experience a disproportionately high poverty rate in most Western societies (Burchardt 2004), are a variant of citizen outside the norm and are often seen as presenting an unwanted drain on the market economy like other groups that are considered undesirable because of their class, race or criminal record.
...Disability programs often state their objectives in terms that suggest their capacity to assure more normal social participation (e.g., promoting independent living, employability, functional social skills, and self-management). As applied, such goals often preclude individuals with disabilities from resisting norms that counter the political ideal of independence (like choosing to live in the company of one's family of origin rather than independently). (Smith 2001)

Now, here's her explanation of "antinormalization" strategies:

Antinormalization strategies potentially form the basis for a more far-reaching project whose aim is to shift the goal of the disability movement from simple demands for inclusion to a utopian vision of a society that values human diversity. This kind of activism has been adopted within the gay liberation movement, including, for example, actions that deliberately destabilize assumptions about proper sexual conduct in public places. To a lesser extent it has caught on among disability rights activists and has been applied in protests that hope to destabilize conventional images of the disabled. In its most radical form, antinormalization is devoted to pushing for the acceptance of difference and its full expression in an open democratic process. As it is put into practice, activists are likely to promote antinormalization side by side with normalization, either as mutual or contingent empowerment strategies (Meeks 2001). This grander scheme for social inclusion raises expectations for accommodating those identities that traditionally have been marginalized. This is important to a feminist politics that hopes to value disabled people's lives, respond to gender-based disadvantage, and expand our views of meaningful citizenship. (emphasis mine)

This scheme --- normalization vs. antinormalization --- makes for a pretty odd way of grouping different approaches to social integration. In the article itself, both the Americans with Disabilities Act and ABA for autistic children --- two things that could hardly evoke more markedly opposite reactions from most autistic self-advocates --- are classed as normalization strategies. Because of that, I'm not sure how useful those terms are for someone trying to navigate the confusing thicket of choices available to a novice advocate or self-advocate. Particularly, I think the "normalization" group ought to be broken down further, possibly along the lines of what is being normalized, and to whose benefit. For instance, there's a world of difference between, say, environmental supports that allow greater participation by disabled people in "normal" society by removing whatever physical, logistical or social barriers had previously kept them out, and "educational" strategies geared toward teaching socially or behaviorally "disordered" people to look, act and speak in ways that are already socially acceptable. The first benefits all disabled people; even if not every disability is accommodated immediately, the legal framework and political precedent exists to make it likelier that they will be. The primary beneficiary of the second strategy is society, whose institutions do not have to reconsider their approaches to dealing with a diverse population when the outliers can just be persuaded to suppress their differences. Also, besides its fundamental conservatism, the second strategy also creates a hierarchy among disabled people that favors those who can more easily pass as normal.

Autism and Intentional Communities

These two posts at And Stimming With Rainbows of Every Design struck a chord with me. I actually panicked a bit reading the first one, since I am on the record praising rural intentional communities for their autistic-friendliness (or, rather, praising one particular community, The Farm, for its friendliness to one particular autist, me). I had to go and reread that particular post to make sure I had not inadvertently implied that rural community living as The One Answer for all autistic people, because that was not my intent.

Danechi raises an important question in the second post that I link, dealing with Bittersweet Farms. BSF, along with the community Danechi's parents are involved in planning, and along with these two other autism-centered communities I found here, appears to be less an intentional community of, by and for primarily autistic people and more a group home set in a rural environment. Danechi worries, rightly, that these communities simply represent the kinder, gentler face of institutionalization.

Of the three fully-established communities I listed above, it is Bittersweet Farms that looks most institution-like to me. It is overseen by the Ohio Department of Mental Retardation and Developmental Disabilities, with its membership coming from caseworker referrals. So, people do not come to BSF; they are placed there. The arrangement of government at BSF is also quite hierarchical: there is a Board of Directors, there are staff members and then there are the actual residents. There are treatment regimes, lots of structured activities, and training geared toward "develop[ing] skills of independent living."

Of the other two communities, I was not able to find much detail about The Brookwood Community, except that it is Christian-based and its citizens work at flower gardening and handicrafts, the products of which are sold online or at three stores. The other place, Farmsteads of New England, describes itself as "a human services agency that has developed an intentional farming community that caters to the needs of people who have autism or other developmental disabilities." It was founded by a special educator who wanted to create a good work environment for her son, whom she believed could not succeed in a conventional workplace, and whom she did not want to put in a sheltered workshop, where she believed the work would be repetitive and meaningless. Its website emphasizes principles of "least restrictive environment," "innate value and dignity" and "self-determination." Like BSF, FNE is essentially a cluster of rural group homes, with a high staff-to-resident ratio and various day programs in basic self-care, life skills and farm work.

I'm not knocking the educational or assisted-living services these places offer. People need those things, and many autistics have additional medical problems that require specialist oversight. Learning to take care of yourself is also one of the most empowering things you can do, and something many autistic people struggle to master. No, what bothers me about these communities is the apparent lack of participation by the autistic residents in the governance of their own communities and the shapes of their own lives. From reading the mission statements of BSF and FNE, it seems that the intentional community is formed of the parents and staff, with the autistic residents existing as the focus of the community but not having any say in that community, or even being members in their own right.

I did find one apparently self-governing, egalitarian community of autistics here, though.

From Darkness Into Beauty: Dawn Prince-Hughes's Autistic Odyssey (Autyessy*?)

Dawn Prince-Hughes's memoir Songs of the Gorilla Nation is a very short book (my copy has 224 pages, with wide margins and 1.5 line spacing), but it's densely packed with ideas. There are three of those ideas that I intend to tackle in this post (a fourth will get a post all its own): first, the effect of having or not having a diagnosis on an autistic's emotional well-being; second, the usefulness (and increasing availability!) of alternative methods of getting training in one's field for people who might not be able to handle a traditional college experience; and third, the astonishing degree of empathy Prince-Hughes demonstrates in her writing about gorillas and other apes. That empathy calls to mind Temple Grandin's gift of understanding domestic animals' emotions, behaviors and thought processes, and casts doubt on the common belief that autistic people do not empathize.

Prince-Hughes describes the course of her life as an emergence "from the darkness (of autism) into the beauty of it." Notice that she does not stop at emerging from the darkness; there's a place (a beautiful place) that she is emerging to, and that place is also contained within autism. She matures, she develops, she finds success, purpose, love and family, and she remains autistic.

Here is Prince-Hughes in her Introduction:

When I speak of emerging from the darkness of autism, I do not mean that I offer a success story neatly wrapped and finished with a "cure." I and others who are autistic do not want to be cured. What I mean when I say "emergence" is that my soul was lifted from the context of my earlier autism and became autistic in another context, one filled with wonder and discovery and full of the feelings that so poetically inform each human life. When I emerged, I learned --- from the gorillas --- far better how I could achieve these things.

Later in the book she speaks of a pattern of unhappiness and alienation that she sees over and over in the childhood memories of other autistics who were diagnosed in adulthood: they (and she) experienced childhood and young adulthood as long stretches of "isolation, confusion and depression" occasionally interrupted by "islands of happiness." The undiagnosed autistic child, Prince-Hughes thinks, is utterly alone in the world, knowing he or she is very different but not knowing there is anyone else like him or her.

I can assure you that not only does the autistic person always know they are different, but they suffer deeply from not knowing why. While they try to come to understand themselves without having a name for their condition, other people definitely are labeling them --- and usually without the compassion that real education would bring.

As someone who got a diagnosis fairly early (I was five, and have no memory of it), I experienced the opposite of this kind of what's-wrong-with-me angst. I knew, from early on, that I represented a very rare and special kind of person, and that I was a rarity among rarities because of my uninhibited capacity for speech. I remember in third or fourth grade I took part in a TEACCH program for autistic children and their teachers, and being really proud of the fact that I had been a necessary part of these teachers' learning about autism. While there have been times, especially in middle and high school, when I felt stigmatized (in high school I mostly felt like I was unfairly enrolled in special ed --- I was an honor student, took a lot of hard classes and felt like having an IEP diminished that), my experience of myself as autistic is overwhelmingly one of pride. I think that's a direct result of my having known, all my life that I remember, what I was. I had the luxury of reading books about people like me, participating in special programs for people like me, and identifying the particular ways in which I fitted (or didn't fit) the diagnostic criteria.

I think much of what Prince-Hughes calls "the darkness of autism" comes from growing up without a diagnosis: school was an unending nightmare for her because she was socially awkward, had no friends, hostile teachers (and, later, fellow students who beat her up for being lesbian) and a wildly uneven skill set that meant that while she read works of philosophy and literature at home, at school she struggled with basic math and got mostly Fs. Rather than get any special help for her problems (or advanced material for her strong suits), she was just written off by most of her teachers: her third-grade teacher took sadistic pleasure in announcing her failing grades to the class and yelling at her for not doing her multiplication tables. By seventh grade, she was drinking heavily, right on school grounds. Part of this might also reflect the time period in which she went to school: she was born in 1964, and so would have been in elementary school in the early seventies. (IDEA was only implemented in 1975. Today, a diagnosis of autism or Asperger syndrome, coupled with difficulty in certain subject areas, would lead to the child's teachers and parents drafting an IEP to help the child overcome his or her particular weaknesses, but I'm not sure what, if anything, elementary-school teachers in Carbondale, Illinois in 1972 or '73 could have done to help an autistic student).

It was this miserable school experience that convinced Prince-Hughes she could not possibly go to college. She dropped out of high school at age sixteen, roamed around the country for several years living on the streets, in abandoned buildings or with various friends and acquaintances until she ended up in Seattle working as an exotic dancer. From there, following an epiphany she had in the zoo, during her first encounter with a gorilla, she got involved with a local technical school's animal-science program, which allowed her to complete her degree as an independent study while working at the zoo taking care of the animals as part of her training. Later, she was able to earn a PhD in interdisciplinary anthropology from a Swiss university that also allowed her to continue her solitary studies, working one-on-one with a mentor rather than going to classes.

The thing that surprised her most as she was trying to set up this unusual educational pathway was other people's willingness to help her. While her memories of school make the prospect of getting a degree a scary one, she finds everyone she talks to is ready to accommodate her:

I was lucky. People helped me. I made many calls and followed many leads. I found an animal science program in a technical college that allowed me to work externally in mentoring situations. I learned that I could get involved in zoo programs and work with the people who ran them to expand my knowledge. People, to my amazement, assured me that all I had to do was ask, and they would help me learn and achieve my goals.

It was in her work at the zoo that Prince-Hughes began to see some of the gifts autism had given her: acute observational skills, diligence and exactitude in following directions, a tendency to record every detail of the gorillas' behavior, no matter how small --- all of these helped her become an expert on gorillas, which got the zoo's director of research to notice her and agree to help her design research projects that could get her bachelor's and master's degrees in anthropology. Seeing her potential, he volunteered to do the very work that most stymies an autistic person (i.e., navigating "the system") for her.

Her experiences at the zoo also predated her getting an official diagnosis of autism, which suggests to me another factor that probably contributes to the darkness of autism: lack of control over your circumstances. It's in the nature of autism to thrive and excel in really specific, narrowly defined areas, and in all other fields to be totally at sea. It's also in the nature of autism to be extremely susceptible to environmental stressors: you might be a great microbiologist, say, but the moment you try to work for a pharmaceutical company you find the fluorescent lights in the lab drive you crazy and make you unable to concentrate. When Prince-Hughes was going to school, she was being asked to do a lot of things, some of which she did well and most of which she did poorly. She was asked to do each of these things for the same amount of time every day, in an environment that was itself hugely taxing to her. At the zoo, she chose her environment (the zoo was her island of peace within the city, which she hated) and she chose what she'd be doing. She still had some difficulties (she has trouble processing spoken instructions, and often won't do what she is told to do; also, if she is interrupted she won't be able to get back on task), but because she loves the zoo and the work she does so much, she stays motivated to do the best she can. She has greater opportunity to shine at these self-chosen tasks than she did at her school assignments, most of which were inscrutable to her.

Despite all the help she received from humans, it is the gorillas Prince-Hughes credits with showing her her niche. Before she worked at the zoo, she went there just to hang around and watch the gorillas in her spare time. She was immediately drawn to them on the first day she went to the zoo; their slowness and quiet make them more accessible to her than humans, who move quickly and demand eye contact and verbal response. She also empathized with them when people would heckle them and try to get them to do tricks; she remembered people harassing her in the same way. Over time, she moves from just watching them to interacting with them, and forming bonds with them, and she comes to think of herself as having a moral obligation to help gorillas, which provides the impetus for her search for an individualized degree program. (Just getting on the phone and dealing with people is very scary for an autistic person, and it's worse when you're trying to talk to people you don't know about something you have no idea how to do. Prince-Hughes also had additional fears coming from her bad experiences in school. She might not have even gone through with it if she didn't feel an obligation to do so).

The gorillas did more than make Prince-Hughes feel at home and give her a purpose in life: they also taught her much about emotions and social behavior. Because their interactions took place at a slower pace than humans', and did not involve so many stimuli, Prince-Hughes was better able to glean actual information from them. They taught her, among other things, the place of ritual in social life, the need to use body language to give your speech context, the function of humor, the reasons for anger, and the (sometimes) close relationship between anger and love. She learns how the silverback (dominant male and patriarch of a group) sets the emotional tone of a group of gorillas, and takes "silverback ethics" as her own: she vows to be mindful of her moods' effect on those around her, and take care not to cause pain or anxiety in those who love her. The gorillas give her what she had been missing all her previous life: a sense of belonging, both to a group (the gorillas) and to a role (the gorillas' spokeswoman in the human world).

*I have decided that a new genre-defining word is in order. There's already "autiebiography," for autobiographies of autistic people, but some autobiographies have more of a Bildungsroman quality to them, with an emphasis on the author's intellectual development and how they got to where they are now. I have made up the word "autyessy" for autiebiographies dealing specifically with how the author gets from point A (whether it's a physical, intellectual or spiritual Point A) to point B (same). Another criterion, I think, is that the author's experience of autism should change --- like Prince-Hughes's did when she moved out of the darkness of autism into its beauty.

Improving Autistic Access to "Culture"

Through GRASP's e-newsletter, I got a questionnaire about "cultural institutions" (theaters, museums, art galleries etc.) and what they can do to make themselves more accessible to autistic patrons. The questionnaire was sent by GRASP ally Michelle Marigliano, to help her prepare for a panel discussion at this conference.

I thought it was such a useful discussion-starter that I'm reproducing it here, for any of my readers to answer in the comments:

1. The person answering these questions
a) is on the autism spectrum
b) is a family member or close friend of someone on the autism spectrum
c) other

2. What cultural insitutions do you visit?
a) museum
b) gallery
c) theater
d) garden
e) park
f) other

3. What is helpful before or during your visit?
a) maps
b) website information
c) audio tour
d) information in print
e) other

4. What is unhelpful during your visit?

5. What would you change about cultural institutions that would make them more inviting to attend?

6. Name some cultural institutions that you think offer a pleasant experience.

For me, the biggest issue with museums, galleries and the like is crowding. If a room is too crowded, I can't pay as much attention to the exhibit because I also have to pay attention to all the sound and movement around me, and, when I'm paranoid (which is not all the time; the need to attend to all sensory stimuli equally is constant), I also have to devote mental space to positioning myself strategically so I am farthest from any knots of people. This can be a pretty demanding activity if those knots of people are constantly moving, as they usually are in a museum or gallery.

That happened when I visited the Smithsonian Institution's National Museum of Natural History in Washington; the noise and crowds had been pretty overwhelming the whole time I was there (I made it through one exhibit and part of a second one), but when I left the huge room the first exhibit had been in for the narrow hall the second one was in, the press of people got a lot worse, and I noticed I was losing the ability to speak or think. My entire consciousness was being absorbed by noise and movement, and everything took on a really scary appearance. I stopped looking at the displays, not having the available brain space to understand them, and started keeping to corners and walls, taking temporary refuge until I was able to muster the strength to find my companion and tell him I needed to leave.

What that incident tells me is that the severity of my reaction has as much to do with the available space as it does with the absolute number of people present. I could handle the same number of people in the mammal exhibit, since that was a huge room in which they could all spread out (and in which the open spaces helped me not to feel trapped). I also tend to do fine at outdoor events, like zoos or Renaissance Faires. Movement is also a big deal; I have no trouble going to the theater, even though there are often huge crowds, because they tend to stay put and are quiet most of the time. (I stay put at intermission, though, to avoid that crush). I also go to the Heart of America Shakespeare Festival whenever I can; really, my main barrier to theatergoing is convincing my family members to take me out to plays.

One indoor event that handled the problem of crowding well was an exhibit of preserved human bodies (I can't remember if it was Body Worlds or Bodies Revealed) in Washington DC. What they did was just to pulse the flow of people through the exhibit; one or two parties started the tour at a time, so that the other people would always be a few rooms away. It worked really well, as far as my ability to enjoy the exhibit without the crowds getting to me, and it wouldn't cost anything to implement, as a staff person already has to be there to take tickets. He or she could just perform the additional duty of regulating traffic.

Those are my experiences; what about y'all?