I was browsing the New York Times Magazine online this morning when I saw a story in the sidebar, ‘When Autistic Children Become Adults,’ from the Motherlode blog. Hmmm, I thought. This might be interesting.
The article opens with a discussion of the rise in autism diagnoses over the last half of the 20th century, and points out that growing numbers of people diagnosed with autism as children are growing into adulthood, with an estimated 88,000 autistic adults in the US today and numbers that will only grow larger in the coming decades. All well and good, an interesting thing to talk about, but the sole focus of the article is on parents of autistic people.
What to do for the wave of children with autism when they grow into adults? There are an estimated 88,000 such adults today, and their parents all face the anxiety that hundreds of thousands more parents will confront in coming years.
Ah, yes, the parents. Yes, by all means, let’s focus on the ‘anxiety’ of the parents, because that is the important thing here; let’s not talk, for example, about the pressure to institutionalise autistic adults and what that means for actual autistic adults, no, let’s focus on what that means for the parents. Let’s not talk about lack of social equality for people with disabilities in general, about ableism and discrimination, about why it is that parents and caregivers are taken as authorities on disability over actual people with disabilities. Let’s not talk about the very real fears that people with autism have about being institutionalised and abused. The story links to a longer piece discussing the growing numbers of autistic adults, and again focusing on what parents are supposed to do, and concludes:
Then, those of you who are struggling with this question in your own life, please use the comments to discuss your plans and fears for your children — and let us know how the rest of us can “actively root” for them as they navigate the future.
Notice anyone missing from this statement? I sure did.
Despite discussing the fact that there are autistic adults right now, their opinions were not solicited, and parents were invited to tell readers how to support adults with autism. Parents. Not autistic adults. I guess we would have nothing of interest or relevance to say, eh? In the comments, which I do not recommend, an autistic adults did speak up, but not to challenge the narrative put forward in the article, that parents, rather than actual people with autism, should be the trustworthy sources of information on this issue.
Anna’s written here about self-appointed ‘advocates’ speaking for people with autism and all the problems embedded in that. This is a serious issue for many people with disabilities, but with autism, it is perhaps most stark, and most striking. We have major autism organisations without a single person with autism on their boards. Run entirely by parents, and sometimes actively rejecting input and requests for discussion from autistic people.
Of course, the comments exploded with a furor of ridiculousness as people demonstrated their ignorance about the deinstitutionalisation movement and other topics. Rank hatred oozed out of many of the comments, and if autistic adults hadn’t already been basically excluded already, they certainly wouldn’t have wanted to join in the conversation after scrolling through the comments to get to the submission box. The article made it crystal clear that commentary from us wasn’t deemed necessary or desirable, as did the comments.
It’s natural and understandable for parents to be concerned about the welfare of their children, and parents fighting hard to keep their children out of institutions and abusive situations most definitely have reason to be worried about what will happen when they die. I’m not saying parents don’t matter, but I am saying that it is not appropriate to position them as authorities over actual people with autism, including their own children. I am saying that people without autism should not be spokespeople for people with autism, that any conversation about ‘what to do with autistic adults’ should include autistic adults.
Yes, I would expect a parenting blog to focus on parenting, but an important part of parenting, to my understanding, seems to be supporting autonomy and self determination for your children, allowing them to speak for themselves, allowing them to become fully integrated members of society. This is most definitely an issue of relevance to parents, and part of parenting is knowing when to speak, and when to listen. It’s time to listen to people with autism, not their parents, and that includes autistic parents who may have some insightful input into this discussion; the underlying assumption in this article is that no parents have autism, and that is demonstrably untrue.
We want to talk about how to ‘support’ autistic adults? How about asking actual people with autism for their opinion on the matter instead of hosting free-for alls filled with ignorance and hatred in the comment sections of major newspapers?
These are some things I’ve been thinking about, but haven’t yet figured out where this train of thought is leading, or what it might connect to, or what conclusions I might end up with. I’m writing this to see if virtually talking it out can help me think through it further, or hoping it will spark some ideas or brilliance in one of you! This is not meant to be an authoritative statement on these issues and there may be glaring issues I’m overlooking! I’m just hoping to have a good discussion about it.
Recently, the federal circuit court in California heard a case about whether the city of Hermosa Beach could ban tattoo shops entirely. The plaintiff – a man who wanted to open a tattoo shop in the city – argued that the ban was an impermissible restriction of his free speech rights. The court wrote a long decision (pdf) considering not whether having a tattoo was something protected by the First Amendment, but whether the actual act of tattooing someone was conduct with sufficient expressive content to be considered as speech. So the court was thinking about whether the act of giving someone a tattoo counts as speech – if the tattoo artist is the equivalent of a painter or a photographer and adding artistic judgment and content to the representation, or if they are more like a computer printer printing out text or images designed by someone else.
This meant the court spent a lot of time discussing the idea of “expressive conduct” – behavior that isn’t actually “speech” in that the person is not speaking words, but is behaving in a way that communicates a message or idea and so is protected the same way that speech is. In the United States, the Supreme Court has already considered a whole bunch of activities and determined that they should be protected the same way that speech is. For example, burning the United States flag, wearing a black armband to protest the Vietnam War, and nude dancing are all activities that aren’t directly speech, but convey a statement or message and so are protected the same way that speech is.
I started thinking about the idea of “expressive conduct” – behavior that conveys a message or statement – and was immediately struck by how existence as a person with a disability could be seen as expressive conduct. Using a wheelchair or cane or braces while out in public seems to me to express a statement: “I am a person with a disability, I exist, I share public space with you.” This is, as we’ve discussed here at FWD and many others have expressed, a radical statement, a powerful message. To me, it seems equivalent to the message expressed by wearing a black armband to protest a war – it is a political statement of resistance.
The law of expressive conduct recognizes that not every instance of the behavior is communicating an expressive message. If, for example, I had mini American flags as part of a table decoration and one fell into a candle and started burning while I wasn’t paying attention, that flag burning would not be sending the same message as intentionally burning a flag at an anti-war demonstration. My accidental flag burning would not be sending a message and so would not be protected as speech. Similarly, a PWD alone in their apartment likely isn’t sending any message or statement with the mere fact of their existence – they might be typing or painting or speaking and sending a message that way, but not simply by existing. So PWDs wouldn’t automatically “become” speech – only when their existence communicates a message.
I’m not entirely sure where that gets us. In First Amendment law, when conduct is considered speech because of its expressive content, it is protected by the First Amendment, which means that the government cannot restrict it without passing certain protective tests. So theoretically, arguing that disability is a form of speech would let PWDs argue that governmental restrictions on their presence are in fact restrictions on speech. But since the First Amendment only protects speech from restriction by the government, not from private businesses or in private life, I’m not sure that would add any protections that the Americans with Disabilities Act doesn’t already provide. So I’m not sure this analogy would be helpful in extending the existing legal rights of PWD.
I’m also unsure how people with invisible illnesses (like myself) fit into this analysis. My being in public does not automatically communicate to people that I exist as a PWD, because my disability status is not apparent from looking at me. So I don’t start communicating this message until I affirmatively disclose or mark my disability status.
I also wonder if this forcibly ascribes expression or speech to PWDs who do not think they are or want to express that radical message.
I don’t really have a strong conclusion to any of this – I’m still rolling it around in my head to see what if anything it turns into. But I like the idea of acknowledging that when PWDs with visible disabilities are engaged in sending a message as powerful as burning a flag.
What do you think? It’s ok if you don’t have a clear position one way or the other but just have thoughts or reactions!
Jesse the K hopes you can take a disabled feminist to tea this month. Her previous guest post was 20 Years and a Day for the Americans with Disabilities Act.
These guidelines come out of my experience working on WisCon, a 1000-person annual convention in a recently remodeled hotel.
There are many elements to making your event wheelchair-accessible. While U.S. law requires minimal wheelchair access, never rely on a venue’s general assertion of “oh yes, we’re accessible.” Those little wheelchair stickers? Anyone can buy them and post them at will, even at the bottom of a flight of steps.
There’s an entire shelf of 2-in (5,08 cm) thick books on this topic; so consider this the Twitter version. Links to helpful resources appear on June Isaacson Kaile’s site.
David Hingsburger is a long-time disability rights activist who’s begun using a wheelchair in the last few years. His essay “12 Steps? Me, I’d Rather Sit” captures the frustration of a last-minute change from an inaccessible venue to one that worked for him:
…These things are difficult because while I appreciate everyone’s understanding, I didn’t want it. While I was thankful for the extra effort made to find a room immediately, I didn’t want it. What I wanted was simple. Accessibility.
Accessibility doesn’t just mean I get easily into a building. Accessibility means anonymity. It reduces the need for compassion, understanding, special consideration, to Nil. It allows me to slip in unnoticed and set up quietly. This doesn’t mean it masks my disability, it just makes it mean something very different.…
Verify & report
Do an on-site survey with someone who’s truly familiar with the needs of wheelchair and scooter users. (Not all wheelchair users automatically have this knowledge, just as not all walking people know everything about sidewalk construction. Some non-wheelchair users also have these skills.)
Check for level paths to every area. A single, unramped step is as significant a blockade as two flights of stairs. Wheelchairs need at the very least 36″ (1 m) for corridors and 60″ (1,5 m) to turn around.
Describe any non-conforming areas in your publicity and program: forewarned is forearmed, and it demonstrates that you’ve actually checked the place out. Don’t use the term “wheelchair-friendly,” which has no defined meaning. Do reference any standards the venue meets: “ADA compliant” in WisCon’s case.
Make sure that stages are ramped as well. (Our venue can only ramp one stage at a time. This requires members to self-ID at reg, and program coordination to place ensure the ramped stage and the wheelchair using panelists are in the same room. I know from experience it’s easy to blow this one.)
Wheelchair Parking aka Blue Zones
Providing designated wheelchair parking in all seating areas permits wheelchair users the same freedom to come and go as those using the seats. Well-meaning non-disabled people will often say, “oh, but of course I’ll move a chair out of the way if you just ask.” And from their viewpoint, that’s a one-to-one personal issue. But from perspective of us wheelchair users, it’s a one-to-many problem, since we must ask for seating rearrangement every where we go.
While leaving empty spaces seems like a solution, chairs inevitably migrate further apart, filling them in. The inexpensive and highly effective alternative are “blue zones,” 36 in (1 m) squares outlined with 1in (2,54 mm) blue painters’ tape. It’s bright, stays down on carpet and comes up easily.
If you know how many wheelchair users are in attendance, be sure you make that many blue zones at the big get-togethers. (Otherwise, 1 for every 100 is a rough guideline.) Always have at least one blue zone, especially in the smallest program rooms (where crowding is most an issue). When you have room for two, put one up front and one in the back. The former is great for the wheelchair user who may also have hearing or vision impairment; the latter works well for those of us who get claustrophobic and need to be able to leave right away.
Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.
Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?
As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.
there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.
After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas. You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).
Finally, this week — September 13-19th — is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.
My weekly events this week are in the UK & the US. Again, we don’t endorse these events, and they are things I come across in my travels round the internet, so these are not the only events going on my any means!
Tuesday September 14th 5pm – Douglas Jefferson Room, School of English, University of Leeds
Advance notice that the poet and critic Michael Davidson will be speaking in the School of English on “Pregnant Men: Modernism, Disability, and Biofuturity in Djuna Barnes’ Nightwood”
Professor Davidson teaches at the Department of Literature, University of California, San Diego. His research interests are in the areas of Modern Poetry, Cultural Studies, Gender Studies and Disability Studies. His most recent book is Concerto for the Left Hand: Disability and the Defamiliar Body (2008)
For further details contact Bridget Bennett: b.k.g.bennett AT leeds.ac.uk or Stuart Murray: s.f.murray AT leeds.ac.uk
What is Disability Hate Crime?: A Historical Exploration of Crimes Involving Disabled People
A Seminar Presentation by Dr. Alex Tankard
Hosted by the Centre for Culture & Disability Studies, Faculty of Education, Liverpool Hope University
Time: 2.15pm – 3.45pm
Date: Wednesday, October 13th 2010
The 2007 CPS Policy for Prosecuting cases of Disability Hate Crime states that ‘It is important to make a distinction between a disability hate crime and a crime committed against a disabled person because of his/her perceived vulnerability’ (9).
Under the social model of disability, is this distinction helpful, harmful, or simply meaningless? What is the difference between assaulting a disabled person while making ‘a derogatory or insulting comment about disabled people’ (8), and assaulting a disabled person because social structures and cultural representations have led you to believe that they cannot defend themselves or obtain justice? Should the first be regarded as a politicised crime, and the second as politically neutral?
In 1884, in the Wild West mining camp of Leadville, Colorado, a disabled man shot a nondisabled man and then pleaded self-defence. The details of this obscure and complex case meet none of the criteria outlined by the 2007 Policy, and yet the disabled participant and contemporary press reportage exposed aspects of the judicial system that marginalised and discriminated against citizens with physical impairments.
In this seminar, Dr. Tankard will use the 1884 incident to ask whether the 2007 Policy’s determination to distinguish between ‘hate crimes’ and crimes committed against vulnerable people perpetuates confusion about the real causes and meanings of disability. Dr. Tankard will argue that the most insidious and intractable social injustice may be found not in the open ‘hostility’ and name-calling classed as hate crime, but in the social structures that disable people who have impairments and render them appealing targets for crime of any kind. Ultimately, she will ask whether the CPS’s decision to politicise one set of crimes while depoliticising others illustrates the continuing failure of official and public discourses to comprehend truly the social model of disability.
The CCDS Research Forum is free of charge, but attendees are required to register by sending an email to Heather Barker dbsw AT hope.ac.uk, using “Alex Tankard” as the subject line.
EUROPEAN CONFERENCE FOR SOCIAL WORK RESEARCH
Inaugural conference: Social Work and Social Care Research – Innovation, Interdisciplinarity and Impact
St Catherine’s College, Oxford
23rd-25th March 2011
The first of a major annual series, the conference will bring together researchers and research users from across Europe and beyond to present and exchange research ideas, findings, developments and applications. The inaugural conference aims to provide a forum open to all who are engaged and interested in social work and social care research, including service users. Check out their website for more information. Please note that abstracts must be submitted by midnight on 20th September 2010.
US (via Disability Law Center):
International Forum on Disability Management
Location: Los Angeles, California; Date(s): September 20-22, 2010.
2010 National Self-Advocacy Conference
Location: Kansas City, Missouri; Date(s): September 23-26, 2010.
Location: Boulder, Colorado; Date(s): November 15-19, 2010.
Festival of International Conferences on Caregiving, Disability, Aging, & Technology
Abstract Submission Deadline: December 1, 2010.
Abstract Submission Deadline: December 15, 2010.