Look Ma, No Arms

I made a post recently, wondering how you reacted to a video showing a man in a wheelchair struggle to cook a frozen pizza. In a comment on that post, a reader passed along this clip of a Chinese woman who has no arms doing common household tasks. How do you feel about this one? I vote for Amazed. She adapted to her situation by training her feet to perform very fine motor skills. Pretty interesting to see the Chinese woman video pared with the pizza video. It makes me think about why these films were made and what messages they were trying to convey (it would help if I could understand the Chinese!). One highlights frustrating struggle while the other emphasizes brilliant successes. Two very different disability perspectives. Thanks a lot for passing this along reader!

Blogging Against the Telethon

A blogswarm was organized over Labor Day to protest Jerry Lewis’ Telethon. While I did not personally participate in this protest, I am very interested to be observing. Theoretically, I can understand how the telethon is using childrens’ disabilities as a means to provoke pity and subsequently donations to the Muscular Dystrophy Association. I can also see that this is done to help children with MD and is probably done with the best intentions. Jerry Lewis clearly thinks he’s doing a good thing, while the disability bloggers couldn’t be more outspoken against him. In a first this year, bloggers got together around this issue to share their opinions. For them, this telethon is the perfect representation of the different understandings of society should approach disability. For a phenomenal list or responses and links to other great disability blogs, check out Kara Sheridan's recap here. I wanted to pull out a few nuggets of argument that I found amongst all these that help clarify to the able bodied person why this telethon is a problem.

A post from Iron Jawed Angel presents a great summary of the opposition to the telethon:

“Jerry Lewis's MDA telethon hurts people with disabilities. First, it perpetuates the myth that living life with a disability is a monumental tragedy. And that it is somehow a life without dignity or joy. Both could not be further from the truth. What is presented on the telethon is an able bodied person's idea of what it would be like to be disabled. The heartwrenching video clips that are put together are done in the most paternalistic, ablist light possible. There is never any credence given to the fact that maybe it's society itself, and not just the people with disabilities, that need to change. Apparently, no one who takes part in the telethon ever stops to consider that they are committing cultural genocide.”

I think that by cultural genocide she means that this telethon reinforces ideas that disabilities are awful, should not exist, and must be cured. A similar uproar developed over Christopher Reeve’s determination to cure his disability instead of live into it. By narrowly emphasizing the need for a cure, the telethon rejects and actively seeks to extinguish a whole culture of strength and beauty that exists in the disability community.

The telethon is structured to provoke pity for suffering children and to convert it into donations. 21 year old David over at Growing up with a Disability posted some well composed thoughts on the destructiveness of pity. Here are some highlights:

“1. Pity [fosters] negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished...”

And finally, here is a great picture that sums it all up from Asperger Square 8.



Only a few great thoughts here on a really immense topic that epitomizes the struggle that people with disabilities have with the able bodied. Each side has a perspective that they feel is not only justifiable but morally motivated. Jerry Lewis feels so strongly about the issue that he has surely worked tirelessly to raise funds for a cure. And he is so sure in his perspective that he has said with conviction, "...if people in wheelchairs don't want to be pitied then they shouldn't leave their houses." There is a lot of work to do.

Trying to Fix a Disability

There has been a bunch in the news recently about Autism. I learned here that researchers at the University of Illinois in Chicago will be focusing their efforts on finding the cause. This made me curious though. With many physical disabilities, I've learned that people don't think of them as things to be fixed but just the way they are. I would even venture to say that part of the definition of "Disability" is a condition that persists over time, not something temporary. Is Autism different? What is the general belief about Autism, that it should be fixed or that it's something to live with? I would definitely agree that regardless, it is a good thing to research a cause so that Autism can be prevented in the future perhaps.

I would imagine however that it causes mixed feelings for someone with autism to support preventing a condition which is a very big part of their own life. How does a person with Autism or with any disability for that matter, feel at peace with their abilities while at the same time working to make sure that their condition does not befall others? Can any readers provide some insight?

Who's Afraid of the Big Bad Myo Electric Arm?

Check out this post over on Bums & Bellybuttons:
"Why is a wheelchair scarier than fat or black skin? Why is it worse? WHY HAS NO ONE WRITTEN A MUSICAL ABOUT IT???? " Great question... What do you all think?
Like it or not, it does seem to be true. Off the top of my head, I'd say that a person in a wheelchair is scarier than fat people, black people etc because far fewer people have any experience with someone in a wheelchair. Even if you don't know people of other races, you see them on TV, on the street... People with disabilities on the other hand are more hidden from view. We are afraid of what we don't know, and that is why there won't be a musical about people with disabilities until the world gets some good solid exposure to them.

Context for Disability Videos

A few years ago I spent some time working on a program to teach kids about disabilities. One of the things that has stayed with me the most was a lesson we learned from educators: be wary of teaching about disabilities through experiential tactics. When you blind-fold a kid and tell them to walk around, they learn that it is really hard to be blind. But those short lessons mostly reinforce the negative thoughts we have about the disabled, how life is much harder, more difficult, maybe even pitiful. While it is good to learn that disabilities make life harder in many respects, that is an incomplete lesson. People with disabilities learn new ways to interact with the world, and I doubt that those lessons can be taught without necessity.

I say all these things to give some context to video posts about people with disabilities such as the one I recently posted here about Frozen Pizza and this one about going grocery shopping. I believe that these films were made to illustrate that having a disability makes simple things in life very laborious. That is true, and it's hard not to get that impression from these films.

But an initial able bodied perspective of these videos may be incomplete. For the people in these films, this is their way of life. They have adjusted to use the abilities thy have. I'd be willing to go out on a limb and say that their lives are not all pain and difficulty. While that may not be the lesson the videos are trying to teach, it is an important thing to keep in mind.

Pizza Poll

Also referenced on Wheelie Catholic is a video of a man in a wheelchair making a frozen pizza. I think this is a really interesting video just because of all the ways we could react to it. As a quick poll, watch the video and post a comment of how you reacted to it.

A) Felt bad for the man because it was so hard for him to make the pizza.
B) Thought it was cool to see the tricks and devices he used to accomplish his goal.
C) Was interested to watch a disabled person for such a long time.
D) Was frustrated with his difficulties.
E) Thought he should have made a simpler meal.
F) Other, write you own thoughts!

Reflection on the blog

I guess, after writing a couple posts on this blog, I'm finally figuring out what it's about: talking about disabilities in a way that the able bodied don't often hear. This talk is of course very common within the disability community, but from my experience, it doesn't often get out.

Here is a great post by Ruth over at Wheelie Catholic that delivers on the kind of stuff I'm interested in. Thanks for your thoughtful post Ruth. Here's a snippit for you lazy clickers:

"Seeing disability as a disadvantage does a disservice to all of us. It denigrates the creative, resourceful solutions that people find while living in a world that is not universally designed. Such a view , unfortunately, grows things like shame, fear and despair in its garden rather than nurturing the human spirit and embracing the individuality of each of us."

You go girl! Tell 'em. These are the kind of thoughts that this blog is about. Are these the kind of things that readers are interested in? What would you like to see more of on this blog?