Standing up for difference

This heartfelt defense of gay marriage speaks to the desire for justice and equality that is also present in the disability community. As a gay man who has found a life long partner, I couldn't resist using this forum to share this touching testament.

"I just couldn't bring myself to tell an entire group of people in our community they are less important, less worthy, or less deserving of the rights and responsibilities of marriage than anyone else, simply because of their sexual orientation."

In the end, when I speak about disabilities on this blog, I speak about difference. The reason I feel somewhat justified in publishing my thoughts is because I think I understand difference because I am gay and because I want to understand members of the disability community. I think that once you have crossed the line into being a minority or a member of a marginalized group, you have a fair understanding of part of what other marginalized people feel.

Thank you Mayor Sanders for your courage to search and speak your heart.

Book Review: Planet of the Blind

I should start out by saying that I'm not a big reader. Its always hit or miss with me on a book. Planet of the Blind by Stephen Kuusisto was definitely a hit. From the first chapters I was really engaged in literally a whole new world. Other books have done this by creating a fantasy landscape but this book paints a beautiful picture of the real world that the author, who is blind, experiences every day.

The eloquent and artful language and the deeply personal and even intimate stories really drew me into this world. My imagination did the rest to immerse me not in the visual pictures of what the author sees (although they sound beautiful) but in a feeling that was very new and exciting, something having to do with the totally out of control experience of "conquer[ing] space by hurtling through it," with only shadows and colors to guide him. What a fantastic feeling this evoked in me.

What I liked most about the book, beyond the way it played with my imagination, was the epic character arc that it unexpectedly crafted. We are graciously permitted to journey through the most private moments of Mr. Kuusisto's life as he struggles with his blindness and grows into accepting it. It is perhaps the most important strength about this book because it delivers a universal message of becoming and discovering who one really is. Just as a person with a disabilities is first and foremost a person, so did this book epitomize that by delivering a basic human story of self discovery and understanding with blindness providing the colorful accents. The story is in the end perhaps the most human of all stories and one that we all have the capacity to understand.

This book also gave me a great education in blindness. By not "teaching" blindness directly, I was able to learn as things came up in the story, but could always keep them in the context of a the author's life. I did not know that there were different types of blindness, or that there could be pain associated with it. I always thought it was just a peaceful darkness. I feel now like I've been given tools to understand blind people that I see in the world around me. Because of the book, I can make informed assumptions about them to plug my curiosity. Sure, the assumptions might not be true, as few of the assumptions we make about people are, however assumptions do make people in the world less scary and less intimidating. I think this stems from being most afraid of what we don't know, and to most able bodied people, disabilities are totally unknown. This book is a great step towards fixing that.

This is a great read on many levels, as beautiful prose, as compelling narrative, and as informative and "good" education. I highly recommend it.

A wheelchair...!!! AHHHHHHH

I think I've finally hit the core reason peoples with disabilities are marginalized. They're different. The able bodied see a wheelchair and can't comprehend a life like that. It feels so totally different from their own ambulatory life, and their mind may unconsciously drift to all the incongruities of a life in the seated position. But they don't have any facts or experience to base their thoughts on.

We are afraid of what we don't know. But that fear makes it more difficult to learn because we avoid that which we fear. So the able bodied shun the person with a disability because of his difference and they don't form a genuine relationship.

This is why disability education is so important, but how do you do it well? It is a challenge to educate on this topic without on the one hand forcing fake affection for the disabled (usually based in pity) or on the other teaching only about the difficulties of a disabled life. The goal must be to educate enough to break down the barriers of fear so that genuine relationships can be built between peoples with disabilities and the able bodied.

Is it really this simple? Solving it is the hard part.

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.