Disability Blogosphere, continued

Ekc writes --

"I think you raise a lot of interesting questions here. In terms of how "normal" and "disability" are defined, I think a lot of this is based on stereotypes and people *think* to be the societal norms. I think a lot of people don't realize how many varying disabilities there are out there, or even the concept that everyone, PWD and AB, are, despite their differences, just trying to live and enjoy their lives to the fullest. Just a few thoughts."

Ekc also writes a blog for disaboom, a terrific social networking site for people with disabilities. The post about the Medical Marijuana TV ad was particularly strong. I honestly had no idea medical marijuana had such strong pain killing properties. I thought it was only for cancer patients to overcome nausea!

To answer your question, Ekc, I love disaboom's approach, though it's so big I haven't had a chance to look at everything. Can you recommend a few of the best blogs (aside from your own, of course) and resources?

Disability Blogosphere

Like I mentioned in my last post, I'm exploring the “blogosphere” to see what's going on in the lives of people with disabilities (or PWDs as some say) and the PWD communities.In the next few posts I'd like to reference some various sites that offer some insider views into this community. But first let me share with you my overall reaction to what I've found while surfing.

We don't live in a black and white world where there is a fine line between disabled and non-disabled (or “normies” as some bloggers identify them) experiences. The lives of all people are extremely deep, complex, and colorful. Nevertheless, I've noticed at least two different approaches to perceiving/representing/discussing disability and the people with them.

One perspective works from the assumption that PWDs lives are successful and fulfilling to the extent they are integrated with mainstream society and follow its standards of success. The Paralympics is a perfect example of this: Participants compete in the same sports played by non-disabled athletes, with adjustments to rules and some equipment to accommodate the particular disability. Success, or winning, is measured much in the same way that “regular” athletic events are measured. Who is the fastest? Who can score the most baskets/goals/points? The celebration is in overcoming the barriers presented by disabilities and human limitations in general. PWDs with this perspective are not necessarily ignoring their physical challenges, but they do work to live their lives positively and this results in notable achievements that break mental and physical limitations assumed for them. From the perspective of a “normie,” interaction with a PWD with this viewpoint is very smooth and conflict-free, because the disability is downplayed. We (the “normies”) get that happy feeling of, "Hey, he/she is not that different from me...we have a lot in common." This assumes, of course, that normies represent the normal standard of looks, speech, thinking, actions, etc.

The second approach to representing disability contrasts starkly with the one described above. The traditional ways of discussing disability with political correctness are thrown out the window and writing can be any combination of blunt, bitter, sarcastic, angry and in some cases, quite funny. For the normies who prefer interactions like the one finishing off the last paragraph, such an attitude may be quite off-putting and offensive. Nevertheless, this approach allows for straight talk about disabilities from the uncensored, "unnormalized" perspective of PWDs. To get a quick idea of what I'm talking about, look at Ouch!, which demonstrates this approach to the "t."

While exploring the two approaches a few questions come to mind and I'd just love to hear your thoughts on them. Additionally, they serve as a mental warm-up that can inform you as we continue this discussion in upcoming posts.

• How is 'normal' defined (in western society we'll say)? What groups determine it and who or what socio-political factors maintain that definition?
• How is disability defined? Is there/should there be a hierarchy of disability? In other words, is someone's worth and ability determined by how closely their condition matches a non-disabled person?
• How is success determined? Is it determined by PWDs or non-PWDs? And is one more valid than the other?
• Is there ever a time when one can be not disabled enough?
• In many ways, PWDs are adjusting their identities and lifestyles to fit with mainstream society. To what extent should non-PWDs consider and work to adapt to the identities and lifestyles of PWDs?

Living With Autism

As someone without a diagnosed disability (though I'm sure I have quite a few undiagnosed ones!), it's hard for me to imagine what it's like to live with one. It's ironic, I suppose -- I spend alot of time and energy writing about "disability," -- digesting academic literature, writing grant applications, editing publications for teachers and public consumption, etc. -- but I have very little contact with people who live with the conditions I'm writing about.

So I've been looking around the blogosphere for those voices. Turns out, there's a vibrant community of bloggers, and some of them are truly extraordinary. There are quite a few bloggers with autism for instance, and many of them also post films to YouTube. My current favorite is Amanda Baggs, who blogs at Ballastexistenz and posts incredible videos to YouTube as silentmeaow.

Here's one of her creations:




It's also interesting to see the discussion and responses to her videos. Some people are totally moved. Others just don't get it.

I'll keep looking around for other voices like Amanda's. I'm interested to hear about anything else you all know about.

Responding to Eduwonk's Zachary and RFK

Dear Eduwonk,

I wanted to share my thoughts on your post about Zachary. I was truly moved.

I would like to start by saying I find it both timely and important that you share a story of grassroots political activism on a day you had planned to write about Kennedy, Obama, and education. The mother in your story showed up at the meeting to take an active role in making our educational system fairer and more just for all students. It was not an act of grandstanding or “theater,” but rather an ethical act of hope that through her words, policy may be informed by the very people who it affects. The picture you paint of a woman waiting to be heard with a sleeping child in her arms is a poignant image of justice-seeking—a quiet reminder for all in the room about the connection between laws and life.

A few words about Zachary’s legacy…Simply based on this story, I know the effect he had on the world was great. As his mother shared their story that night, people heard. The busy, tired, and perhaps cynical leaders of the meeting looked out across the room and thought more deeply about the decisions with which they were confronted. Zachary changed the world by his example.

We are all asked to be as involved, like Zachary and his mother, in creating the educational system we want for our children.

Thank you for sharing his story.

Access Additive

Thanks to Julie for suggesting a look at Ira Socol's blog, SpeEdChange. I loved the post from June 2. It's so true: You never create access for a deprived group by denying access to anyone.

I'll definitely keep an eye out for SpeEdChange from now on.

Autism -- How to know what works?

On Friday, “Autism_Mom” wrote:

“I've come across the Shafer Autism Report which seems to have lots of information on Autism - problem is I don't know how much of this info is based in good research. Seems like a lot of people slap "research-based" in front of whatever they're selling - how do I really know if it works?

It's true -- determining the quality of information on autism is tricky business. Even the Shafer report states they are not endorsing any treatments or providing any medical or legal advice. How frustrating!

How to start… Be a voracious reader, gather all the evidence you can, and seek the advice of the professionals. Remember that nobody knows your child better than you do, so pair your knowledge with professional understanding. Ultimately your knowledge of your child should form the foundation of the approach you take. An About: Autism Spectrum Disorders posting from 2007 made this same point:

“As you start to dig deeply into the literature on autism treatments, you'll find dozens of available options. Which are the "best" treatments? As the professionals will tell you over and over again, every child's needs are different.”

Still it’s worth taking a look at the list on that blog, which includes “what’s most likely to be offered and/or available.” You might also check out this discussion at Dr. Chris’ Autism Journal.

Hope that helps!

Into the Deep Water -- Autism

James Mulick, professor of pediatrics and psychology at Ohio State University says “there's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”

Autism is certainly one of the most mystifying and challenging disabilities for both researchers and practitioners. With so many “fad” treatments popping up every day, how can parents, administrators, and teachers know where to find an effective, research-based intervention that will actually help a child?

Mulick, who chaired a symposium on “Outrageous Developmental Disorder Treatments at the American Psychological Association annual meeting last year, says Early Intensive Behavioral Intervention is the only therapy shown to have long-term positive effects.
As Mulick said in this article in Ohio State’s Research Communications, “EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.”

So with so many “snake oil” solutions out there, and only one legit approach available at an astronomical expense, where can educators and parents turn for information?

I’ve found a couple of places to turn, but I’d love to hear from others who have experience swimming in these waters.

Here’s what I’ve found:

• Educating Children with Autism and Pervasive Developmental Disorder. www.autismweb.com/education.htm
• Educating Children with Autism. www.nap.edu/catalog/10017.html

Has anybody used these resources? What did you think of them? Have you implemented a research-based program effectively? What made it effective? If it wasn't effective, why not? If you're a parent, have you found any particularly successful strategies?