Advocacy
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.
Leverage
Published July 30, 2009 @ 10:51AM PT
There is a concept in the systems field called "leverage." Leverage is the part of a system where a small change has the largest potential to impact the whole. As a simple example, if a person treats the symptoms of an infection with pain killers, the state of the infection doesn't really change much; there is little change in the whole system. However, if a person treats an infection with antibiotics, not only does the state of the infection change dramatically, but the symptoms of the infection go away as well; there is large change in the whole system. The leverage in that example is in the infection, not in the symptoms of the infection. Leverage points are rarely in the place that seems most obvious.
Part of the purpose of this change.org site is to create change. Change in individual perspectives and paradigm. Change toward less assumptions, toward more respect, toward a better understanding. Change on a public, universal level in policy that supports respect, opportunity, equality, and quality of life. Discussion, action, the social-sharing-medium of the Internet.
But I do wonder sometimes--where, really, is the leverage? If we want public attitudes toward autism to shift away from medical-deficit models and toward social-strength models, if we want public perception of autism issues to be as human rights issues, then where is the greatest point of impact? The media? The government? Each other?
How much leverage is there in blog posts? In the discussion that comes from blog posts?
How much leverage in emailing a legislator, or a public figure?
How much leverage is there in one single person perceiving old things in new ways, and telling all their friends? And starting a blog of their own?
How much leverage in the things that exist outside of this blog, outside of the blogosphere, outside of the Internet?
How many impact points exist beyond our interactions here, ways to get involved, ways to speak out, ways to demonstrate? In passing out autistic-positive flyers at events that would disparage us, in being visible, in demanding to be regarded? In attending town hall meetings, in getting involved in local policy making, in not letting policy makers get away with ignoring us, autistic people, in policy decisions about us, that directly affect us? In getting involved in research that is good for us rather than bad for us, in working with cross-disability self-advocacy groups and building on the ground work that came before us, in thinking critically about what comes through the media? In simply standing up to an abuser and refusing to take it, in any way, even just once?
How many leverage points are there?
Social systems are huge and slow, they have a lot of inertia, and take a long time to change. But if we find the right leverage points and push, what can we accomplish? How much have we accomplished already?
Camp Charlie
Published July 30, 2009 @ 12:39AM PT
That's how Jim and I have been characterizing our summer. At first I saw Camp Charlie as a camp with one camper (Charlie) and two counselors (Jim and me), hurrying around in a somewhat harried manner. As July comes to an end, I've felt that it's become a camp with three campers on a full schedule of:
(1) Morning: Academic time (Charlie goes to Extended School Year (ESY), Jim and I sit in front of our respective computers and get as much done as we can).
(2) Afternoon: Recreation (a long bike ride, sometimes a swim + gym time); quiet time (in which I try to sneak in typing practice and other "edutainment" between video-watching on the computer); out-in-the-community time (often visiting various stores); canoeing (Jim's latest addition to his and Charlie's roster of outdoor pursuits)
(3) Evening activities: Shorter bike ride and/or basketball
Back in June, I was anticipating that this was going to be a tough summer. Charlie's school year ended with a stack of incident reports. He'd already been having a difficult and difficult-er time as the school year progressed and Jim and I were called into a district-requested IEP meeting in June. That meeting was cancelled by the district and rescheduled for July at which time we found ourselves back on the road to find Charlie a school.
We've been making the rounds visiting schools, reviewing Charlie's records in the school district offices, setting up appointments, having Charlie observed.
Many of you have been on this road before and your support suggestions have been more than welcomed. Just knowing you're all out there has made a tremendous difference: I'm heartened not only when I read your comments here. When we're at the table talking to the school district and the tape recorder is running, it means a great deal to know that you're not alone, that your child is one among many children for whom our educational system is not working. And that means, we need to change the system, change what is going on in the classroom and in the schools, and figure out how to create an appropriate education and accommodations for students with disabilities.
(As many people have pointed out to me, I should watch what I'm writing here about my son's school situation; school districts, consultants hired by the school districts, and others can of course read this. So I'll leave it at that.)
But back to Camp Charlie.
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!)
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!)
Sarah Palin, Future Advocate for Disabilities?
Published July 26, 2009 @ 12:40AM PT
What lies ahead for Sarah Palin following her resignation from the governorship of Alaska?
"Civil rights leader for people with intellectual disabilities," as Special Olympics president Tim Shriver suggests in a July 23rd Washington Post op-ed. This, he says, would be the "perfect job" for Sarah Palin, the mother of a young child, Trig, who has Down Syndrome; these are her "powerful credentials." Writes Shriver:
As a parent, imagine the attention she could help draw to challenges children with Down Syndrome face in early childhood. There are far too few early childhood centers for children with special needs, far too few day-care options, far too few preschools that accept children with Down Syndrome. Palin's name could do a lot for the cause of early childhood service improvements.
Imagine the impact she would have if she testified before Congress about the health disparities facing children with Down Syndrome. Good medical care is difficult to get and frequently substandard. I remember one medical professional telling me that care for children with special needs was usually "quick and dirty. Get them in and get them out." Palin could expose the dirty secret that people with special needs are among the most discriminated against populations in the health care world.
Imagine Palin leading efforts to awaken her community and her country to the gifts of people with Down Syndrome. Today, when parents learn that they are carrying a child with Down Syndrome, the vast majority choose to terminate (some estimates are as high as 90%). This doesn't have to be about the legality of abortion but rather about informing prospective parents that people with Down Syndrome can lead happy and productive lives. That's a message that both the conservative Sam Brownback and the liberal Ted Kennedy have endorsed. I bet they'd both welcome Palin as a messenger.
Noting that some will says that Palin is "controversial to be effective in these roles," Shriver suggests that she could be "united," and suggests that she join with President Obama's Friday announcement to make the US a signatory to the 2006 United Nations Convention on the Rights of Persons with Disabilities: "Couldn't Palin join with the president in helping our nation renew its global leadership for full inclusion of people with disabilities?"
During last year's Presidential campaign, Palin's being the mother of a child with Down Syndrome was regularly noted. Examination of Palin's statements regarding disability suggest that, before taking a national (and, as Shriver seems to suggest, even an international) role in advocacy for individuals with disabilities, some study of disability in a broader context and of disabilities rights more generally would be helpful. In September of 2008 Palin spoke about curing "dreadful diseases" following a reference to "special needs." Some more extensive comments from an October 2008 interview refer to Palin's views on providing "opportunities to special needs children and special needs adults also."
I was fortunate to have been interviewed by Newsweek about John McCain's pledge to help families with special needs children. In response to reporter Claudia Kalb's question "Isn't Sarah Palin a good role model for special-needs families across the country?" I said:
I appreciate the fact that the choice of Palin brought working mothers, and especially working mothers of special-needs children, into the national discussion. And as a mother, I hesitate to criticize or judge another mother on her parenting style. But I'm concerned about the reality [she would face in] taking care of a special-needs child.
And, while one, again, prefers to refrain from casting any judgments on other parents, and especially parents of children with disabilities, I'm not sure how Palin might be able to balance the realities of day-to-day care for a child with a disability while throwing herself, as has been speculated, into preparing for a future presidential campaign. If she can, more power to her, and many will be curious about how she manages it, and what she will be "advocating" for.
The Autism Corps
Published July 21, 2009 @ 12:48AM PT
24/7 and one-on-one.
That's the kind of care my 12-year-old son needs. One-on-one teaching at school and certainly somehow is always with him.
While he may not always need the one-on-one staff to Charlie ratio, Charlie will always need support and care, full-time. Currently Jim and i are able to provide this for Charlie. While we always have our minds turned towards the future and how we'll keep providing what he needs throughout his life, what consumes the greater part of our energy is helping Charlie in the here and now. Jim and I are able to take care of Charlie while both working full-time; we both teach college students and are able to have flexible schedules. Nonetheless, I've often had to consider not working to take care of Charlie which would help in some ways while making other things (our finances) a bit difficult.
Plenty of people are in the same boat. And that's why parents of children on the spectrum Shannon Des Roches Rosa and Jennifer Byde Myers, and self-advocates Rachel Cohen-Rottenberg and Lindsey Nebeker have started this petition to ask First Lady Michelle Obama to meet and form an "Autism Corps." Here is the petition's full text:
We, the undersigned, propose that Michelle Obama meet with Shannon Des Roches Rosa, Jennifer Byde Myers, Rachel Cohen-Rottenberg, and Lindsey Nebeker, representatives of the autism community, to discuss effective strategies for providing urgently needed direct assistance to overstressed autism families and individuals on the autism spectrum.
We believe that an Autism Corps, based on the Teach for America model, can supply trained volunteers to effect this assistance and provide four to fourteen weekly hours of one-to-one in-home support for people with autism.
We believe supporting adult autistics and autism families who have immediate needs for day-to-day assistance supersedes discussion of ongoing autism research and causation.
We believe in supporting measures that benefit all in-need children with autism, adult autistics, and autism families.
The notion of an "Autism Corps" addresses a need sounded here and all over by many in the autism community. More people trained to assist individuals on the autism spectrum means that support could be available for individuals in their homes and in their communities, in the settings that they know and are familiar with. It means that parents and others who care for autistic individuals might be able to work to provide much-needed financial resources for their families.
As a parent, I love my son unequivocally as he is, for who he is. It's a reality that he has many needs and that "just not anyone" can take care of him. I'm grateful that I can work to provide the resources to help support Charlie and provide him with all that he needs. But I know not everyone can do so and the time may come when Jim and I need help that we can't readily find.
Currently 154 people have signed the petition. Please sign this petition to ask Michelle Obama to meet and form an "Autism Corps." And if you've thoughts and concerns about the notion of an "Autism Corps," the petition's organizers are interested in hearing them---you can leave a comment via a Facebook group or on this post.
