Change.org Is Recruiting Disabilities Rights Bloggers

by Mike Smith

Published September 17, 2009 @ 08:00AM PT

Want to blog on an issue you're passionate about for an audience of over a million activists and nonprofit leaders? Change.org is expanding our team of paid freelance bloggers to help broaden our coverage of the most important causes of our time, including Disabilities Rights, and we're looking for bloggers for all disabilities.

Visit http://www.change.org/bloggers for more information.

AR = DR = HR and Onwards into the Future!

by Dora Raymaker

Published July 31, 2009 @ 12:46PM PT

Autistic Rights are Disability Rights are Human Rights. That was the topic of the primer I wrote when this blog started back in January.

While autism makes us different, autistic rights is really about those things we all need, autistic or not, disabled or not, minority or not: food and shelter, respect and love, and empowerment to live our own lives in freedom, happiness, and health.

This is the point I've hoped to make with each post, the perspective I've wished to share. The change I've wanted to initiate.

It is deeply satisfying then that this blog itself will be changing to better reflect the AR = DR = HR equation, as autism-specific blogging merges into broader Disability Rights blogging at change.org in the future. This is As It Should Be.

As far as my own future, I'll be doing some public blogging still (though with much, much, MUCH less frequency and after a short break) on ASAN's change.org blog (and who knows where else). I'll also be starting a new appointment with the Oregon Commission on Autism Spectrum Disorder (remember that?)--my first real experience with public service and something that would have been literally unimaginable to myself not so long ago. I'll be continuing my advocacy work with ASAN and SAAL. And primarily I'll be working on community based research with AASPIRE, which, believe it or not, has been my "day job" all along. Somewhere in all this, here's hoping I'll facilitate some change in the overall direction of better civil rights and quality of life.

Thanks everyone for your time, your comments, and your insights. Keep pushing--keep making the world a better place for us all.

Ave atque Vale, Change.org

by Kristina Chew

categories: acceptance, Advocacy, Education, social justice

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.

Read More »

Sweet Sibling Short

by Dora Raymaker

categories: acceptance, art and music, Diagnosis

Published July 30, 2009 @ 04:00PM PT

The Aspergers Association of New England (AANE) has a documentary short posted on their site called My Brother Tom. The film was made by Kaz Gamble about, well, his brother Tom (strange, I know). The film is also about acceptance, understanding, the importance of diagnosis, and insight both into a healthy sibling point of view and into issues specific to that generation of individuals who were not diagnosed until well into adulthood. Most importantly though, it's a sweet, fun film to watch.

Here's the trailer from YouTube.

You can view the full film on AANE's site.

Special Olympics in Greece 2011

by Kristina Chew

categories: Recreation, social justice

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."

Leverage

by Dora Raymaker

category: Advocacy

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

by Kristina Chew

categories: acceptance, Advocacy, Recreation

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.

Read More »