social justice
Ave atque Vale, Change.org
Published July 31, 2009 @ 12:33AM PT
This is my last post here at the autism blog at Change.org. I relate why more towards the end. As this is my final word here, I wanted to focus on a topic that Dora and I think is important to note in writing about autism and disability, the need for critical thinking.
You can now find me at my website kristinachew.com and my new blog, We Go With Him.
Once upon a time I had a very different life.
For one thing, I taught freshman composition at a large Catholic university here in New Jersey (and, briefly, for another prominent institution of higher learning here). I was trained to teach Classics---the culture and history of the ancient Greeks and Romans---and to translate ancient Greek and Latin. I took the composition jobs because I needed to: My husband and I had just packed up and moved back to Jim's native New Jersey from St. Louis, to find the best education for our son Charlie. I first found a 0.333 position teaching Latin at a local public high school and then phoned in to say I wouldn't be able to take it, as I'd gotten a part-time position teaching composition (with benefits).
The students had to write a research essay and this meant I always had to devote one class to "Using Internet Sources." I'd go through the differences between .com, .org, .edu, .info and then show how you can't always judge a website by its "dot whatever." Like many professors, I did not allow students to use Wikipedia as a source on their papers (I still don't). We talked about peer-reviewed journals and used the library's numerous electronic databases. Students ended up with lists of bibliographical sources, URLs, and maybe the printed-out full text of a few articles.
Most of them didn't realize, that their real work began at this point: It's one thing to have a pile of research. It's another thing to read through all of it. And it's yet another to evaluate all that information, to synthesize and analyze and go beyond one's gut reactions and what just "made sense" or "seemed right." Especially when you encounter a source that makes an argument contrary to what you are convinced is right, you must demonstrate that you can, thoughtfully and carefully, evaluate the claims on their own terms, and turn a critical eye on your own views and even your own experience. You must look at the language the writer uses and at how they use the words: Is there rhetoric meant to attract a reader's sympathy? How does the writer use her or his sources---does she or he clearly and accurately represent their theses? Is there irony or obfuscation? You must go and look up the original sources rather than relying only on second- or third-party opinions.
What I often found very difficult to explain to my students was the difference between writing an essay using such critical thinking skills, and more of a response or reaction paper. Very often, students struggled to make arguments based on a careful synthesis of the ideas in their sources. They made arguments that were more akin to opinions and plugged in the sources only if they clearly supported their points.
In many discussions about autism, research, and science, on the Internet and elsewhere, the same sort of thing happens for reasons that are more than understandable.
As of June, I've been blogging about autism every day for four years. I started writing daily accounts of our son Charlie on a blog called My Son Has Autism that became Autismland. I shied away from writing about controversies. But when I started writing Autism Vox and focused more on science and health topics, I quickly found myself blogging about one "hot topic"---vaccines---after another. While I've tried to focus more on issues of education and policy here at Change.org, those "hot topics" have inevitably come up as one follows the latest in the media about autism. There is a lot---an Internet's worth---of information out there. It's become almost too easy to compile lists of sources and links and URLs, to read blog posts and Tweets and articles about all those "hot topics" and to pass them on to support the position one is taking. I know; I do it myself, though I certainly try to evaluate science and other sources for what they say.
And often in the heat of the moment, when we're trying to make a point---that something "caused autism" in a child or that a certain "treatment" is producing miraculous results---we just provide the information without sifting through and analyzing, and reflecting, and discerning, where our emotions are seeping into our views. When you're writing in the ever-changing environment of the Internet and when you're a parent honestly desperate to find something to help your child and to find support for why you're doing the crazy things you're doing, information that says just what you want it to say is hard to resist.
Special Olympics in Greece 2011
Published July 30, 2009 @ 02:15PM PT
We've had an occasional series of international guest bloggers here from Australia, the Netherlands, Canada, Germany, the United Kingdom, and Brazil. My own understanding about autism and disability took on a focus beyond the US after I went on a trip to Greece with some of my students back in March. While there, I met two mothers: Emma's son Dimitri has Angelman Syndrome and she blogs at The Iron Chicken. Marilena's son is Ρίκος and she blogs at Τι λέει το πρόγραμμα?, which I have been doing my best to follow (with the happy side-effect of helping me to learn Modern Greek). Emma has a post on the Special Olympics, whose World Summer Games will be hosted in Athens in 2011.
Emma notes that she feels "irritated, and occasionally out-right angry" about this and for reasons that I share, and have somewhat expressed in two of my own posts on the Special Olympics. It's not the ideas and the philosophy the Special Olympics that irk but, as Emma cogently writes:
The irritation stems from the knowledge that Greek politicians are going to being doing their photo opportunities and making their postive statements about inclusion and acceptance and the progress that Greece has made etc, etc, etc, when in fact they are doing pretty much.....nothing towards inclusion and acceptance or anything else regarding disability.
And while I'm sure that every country which participates in the Special Olympics also have incidents of discrimination, neglect and abuse towards people with disabilites, I can't help but wonder where Nikos, a boy with Down Syndrome who is currently living in an institution in appalling conditions, will be.
Add to that a comment I read on facebook group Mental Disability - Eimai diaforetikos... e, kai? about children with autism being excuded from the Special Olympics in Kastoria because "the children with autism are particularly aggressive and have the tendency to be distant", I'm left asking myself whether Greece is ready to host the Special Olympics?
I hope...I hope many things. I hope the Special Olympics will help to dispell some of the myths and stigma which still surround intellectual disability, I hope that people will be encouraged to take more of an interest in what is going on around them, to people in the their own country. And of course I hope that the athletes participating in the Special Olympics have a great time.
I hope my feelings of confusion and irritation are misplaced.
I'm completely with Emma here. Charlie loves being active and excels at bike-riding and swimming, and we've been hopeful about Charlie participating in the Special Olympics. The reality of having him be on a team and/or participate in activities has been much more of a challenge in itself. I remain hopeful that Charlie might one day participate but I also want to make sure that has indeed has a "great time" and that the focus isn't on the competition, but his participating.
Like Emma, I hope indeed that my own "feelings of confusion and irritation are misplaced."
Mixed Reviews on ADA-Day Speech
Published July 29, 2009 @ 04:00PM PT
A full written transcript of Obama's ADA B-Day and CRPD-signing speech is now available for those of us (this includes me) who start to hear "blah blah blah" after about the first 5 minutes (or less).
While some coverage of the event was upbeat, New Mobility's blog headlines Obama's ADA Speech Bombs. That post points out a number of the disability stereotypes I've railed on repeatedly here in the president's speech, and relates the audience's (duh) lack of enthusiasm over an attempt frame medical treatment in a disability rights context. Wrong crowd to try that with.
The review ends with a sarcastic reference to the current situation with the CCA (apparently I was not the only one who felt the idiom lip service was appropriate).
Too, let's give lip service to the rights of Americans to live freely in the community. Maybe then they'll stop handcuffing themselves to my house.
In the comments to the post, some agreed with the negative assessment, but others did not.
What do you make of the president's ADA-Day speech? Good? Bad? Like ADA-Day itself perhaps a mixed bag?
Privilege
Published July 29, 2009 @ 11:10AM PT
Occasionally some particularly powerful tool for paradigm change erupts--something that shatters assumptions, removes filters, realigns biases, and massively swaps perspectives. White Privilege: Unpacking the Invisible Knapsack by Peggy McIntosh, a checklist of items one can be assured of if they are white in the U.S. like "I can if I wish arrange to be in the company of people of my race most of the time," is one of those tools.
McIntosh's checklist has spawned other similar lists such as The Male Privilege Checklist, the Straight Privilege Checklist, and now, thanks to brilliant work on the part of Bev at Asperger Square 8 and many clever commenters, Neurotypical Privilege: A working document. Bev's original list starts out,
- I have never been asked to prove that I am neurotypical.
- I am allowed to use the word "we" without being accused of trying to speak for all neurotypical people.
- I can share my opinions publicly without fear of being accused of not really being neurotypical.
- I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing.
- I can reveal to my boss and coworkers that I am NT, without fear of losing my job.
- I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level.
- I can easily find other NT people in movies or on television shows that are not explicitly about being neurotypical.
- When people realize I am neurotypical, they do not ask me if I am like a particular character they have seen in a movie.
- I do not have to fear that important decisions about my life will be made by autistic or other non-neurotypical people, just because I am neurotypical.
and continues on for the first fraction of the page. The rest of a very long page is contributed items, continued in comments (many of them by some of you), and every one of those comments absolutely worth reading.
This importance of this checklist is not just as a wake-up call to anyone still sleeping in autism stereotypes. It is an illustration that autism issues are in essence minority issues, are civil rights, are human rights issues. If you read nothing else written by someone on the spectrum this year, read this list. (Thank you Bev and commenters!)
On Achievement & Accomplishments
Published July 27, 2009 @ 02:27PM PT
10-year-Ben Kredich, who's on the spectrum, swims the 25-yard freestyle in the Greater Knoxville Area Interclub Swimming Association City Championship Meet, the July 26thGo Vols Extra reports. And 18-year-old Robbie Phillips, who's also on the spectrum, competed in yesterday's ninth annual Nautica New York City Triathlon, as noted the July 26th Ocala.com.
My first thought: Charlie's two-thirds ready for a triathlon. He can bike 12 miles at least and, if needed, he could swim as long as he had to. He just has to learn to run like Robbie and Alex (Charlie can certainly run, but not in any organized or competitive setting).
Second thought is, while avidly cheering on Ben and Robbie for their accomplishments, I'm mindful of a recent post by Dora: Is the only reason their achievements were reported because they're on the spectrum and the news stories therefore have that heartwarming edge? "Why should it come as a surprise that autistic kids, like any other kids, benefit hugely from doing stuff they like and are good at?," as Dora wrote; why should it be a surprise that autistic kids (and individuals on the spectrum) can achieve in athletic events, and otherwise?
Monday Autism News Potpourri
Published July 27, 2009 @ 10:38AM PT
Thumbs Up: The United Nations Convention on the Rights of Persons with Disabilities was signed on Friday as planned. Here's print coverage from USA Today and (ironically non-captioned) video coverage from CSPAN. The CSPAN video is of the actual signing ceremony, and it starts off with a nice little speech by Hilary Clinton.
Thumbs ? : The motivation for the ADA-AA came from issues with the way the Equal Employment Opportunity Commission (EEOC) had decided to implement the ADA. The original intent for the ADA is as a civil rights law, and the ADA-AA was to restore that original intent. Now debates about EEOC implementation seem to be intent on leeching the power from the amendment. Will the fate of the ADA-AA be to restore the ADA as powerful civil rights legislation, or will we end up back at square one?
Thumbs Down: As the CCA remains off the legislative agenda, CCA rallies continue with confronted the Democratic National Convention. Adapt has set up a sweet action campaign page, complete with (also transcribed) video.
Not all news on the CCA front is bad; some legislators have signed onto it. Check the list for your legislators--if you see their name on it, send them a thank you; if you don't see their name on it, ask them to please sign on!
Thumbs Up!: On a non-policy note of special interests and the path to college successes, here's a lovely article about Cole Kingsbury, geologist and going to college in Alaska. (Side note: volcanoes--YAY!!! Definitely, IMO as well, a perk of living in Oregon!)
USA Finally on Board with UN CRPD
Published July 24, 2009 @ 04:00PM PT
After three years, the USA has finally signed onto the International Convention on the Rights of Persons with Disabilities (CRPD). The Convention was created in full participation with the international disabilities community on the principle of Nothing About Us Without Us, and reflects the critical shift in paradigm toward social, affirmative, and equitable perspectives on the essential human rights of people with disabilities.
Obama announced earlier in the week that he would be signing the convention today, Friday 24 July, 2009.
This signing is coming on the week of the 19th anniversary of the ADA.
Here's linkage back to a long-ago post of mine on the CRPD, which includes, perhaps more importantly, some links to self-advocacy manuals based on the treaty from Harvard Project on Disability.
