Good Disability Coverage

The New York Times had an article about the state's new governor, and I was pleased to see good coverage of a person with a disability.

"Mr. Paterson spent the weekend drafting the speech, rehearsing it and committing it to memory. Because he is legally blind, he does not have the luxury of being able to read from a teleprompter. So his remarks will be partly memorized and partly improvised, aides said."

This is good coverage because this was really the only mention of his blindness in the whole article. It doesn't gloss over it, but it also doesn't make it a big deal. The same is true of the article in the Chicago Tribune.

"ALBANY, N.Y. - David Paterson was officially sworn in as New York's governor on Monday, becoming the state's first black chief executive and vowing to move past the prostitution scandal that has rocked the state Capitol. Paterson, who is legally blind, was interrupted at several times during his address with thunderous applause. Before he gave his inaugural address, lawmakers in attendance gave him a two-minute standing ovation and chanted his name: "David! David! David!"'

See media... that wasn't so hard, was it?

In an article entitled "So What about the Blind Thing" in New York Magazine, they notice the lack of disability centric coverage.

"So far, David Paterson's blindness has really only cropped up as an aside in news stories about New York's soon-to-be governor. They're all, 'he's 53 and he's an adjunct at Columbia and he lives in Harlem and he is African-American and oh, yeah, also he is legally blind.' "

I am glad that disability was so overlooked that a publication found it noteworthy to point it out. Its very affirming for me to see. However, this was an easy one. People will always be interested in a new governor. The story doesn't need to depend on disability to make people read it, and therefore disability appropriately fades into the background.

What I wish people would accept is that nobody's story should depend on disability to make people read it. However, for some reason we want to read about people inspiring us, even me, and people with disabilities are easy targets for those stories...

Eating my own words

I'm torn about how to deal with this story in the New York Times. It has 'So Courageous!' written all over it, but I can't help but love it.

"[Dustin] Carter, 18, is a 103-pounder whose legs end at his hips, whose right arm stops just after his elbow and whose left arm is even shorter." In this story we learn that he has won enough matches to go onto the Ohio Division II wrestling competition.

Dustin of course eschews being treated differently even though the article implicitly does so by calling him out for his accomplishment. Given my normal track record on these stories, I expected to snub this story but I just couldn't see it the same way. I think that the written article does fit the pattern that I've discussed before. However, I think I'm able to see past the so courageous, 'my hero', and 'miracle' stuff that the story conveys, to a simpler story, one where a young man achieved something that he cared deeply about. Forget about his special challenges. Let's praise him because he accomplished his dream. How could you not be moved by that...

"When time finally ran out during his consolation semifinals match against Dustin Davidson, the scoreboard showed a 3-1 victory for Carter. Knowing the victory had landed him in the state tournament, he scurried to the middle of the mat, lifted his head toward the ceiling and roared. Not once, but twice.

'I’ll never forget it,' Carter said. 'I’ve been waiting for this too long. It was my last chance. I’ve been struggling to sleep all weekend. I’ve been dreaming about my matches. It’s stayed in my head too long. That was everything coming out.'

His family, wearing buttons with pictures of Carter, surrounded him as he galloped to his father and leaped into his arms. They cried into each other’s shoulders. The friends and family who surrounded them shed tears, as well.

'I don’t think I’ve ever felt such elation in my life,' Lori Carter said, struggling to keep her voice steady. 'He’s worked so hard. After everything he’s been through, he deserves his dream.' "

That's the real story here.

So Courageous! Disability in the Media: Act 7, A Vision for the Future

For months now, I have railed against the media for what I see as the limited, ignorant, and harmful way peoples with disabilities are often portrayed in the media. I wanted now to offer a simple vision of how things could be.

Principle 1: The media offers great power to increase awareness; use it. Peoples with disabilities should be frequently presented in media stories. Media offers a valuable channel through which to make the general population familiar and comfortable with, the visual indicators of disability. This principle is already widely accepted, and peoples with disabilities are frequently presented in the media. This should continue.

Principle 2: Educate through example. If we want peoples with disabilities to be treated the same as everyone else, then we must present them in the media the same way as everyone else. Stories should be about something notable or interesting they accomplished to further (or detract from) their community or a particular idea, or any subject that portrays the person as more than just a disability.

I was very pleased to find an example of my vision already realized in the world, and I wrote a post about it a while ago. Kudos to Crains Chicago Business for hitting the nail on the head. This story is about a man opening a new bank that would be designed to serve disabled people or those who have trouble leaving their homes. It is presented as a new idea which might find a strong market. It is also mentioned that the entrepreneur has a disability.

This story is a great example because it treats the man with respect and dignity by calling attention to him for his good idea. It is also a good example because by no means does it skirt around the issue of the disability. By so doing, the story sets an example of treating members of the disabled community the same as everyone else. It also gives visibility to this community which subtly educates the able bodied population. The story shows by example that we are all more the same than we are different, that our differences do make us who we are, but that we are still fundamentally human beings and should never be reduced to anything less than that. Oh, that all media could be like that... maybe in the future...

So Courageous! Disability in the Media: Act 6 On the Front Lines

Thanks to Ruth at Wheelie Catholic for this story about being interviewed as a disabled tennis player. She recounts her frustration with never being seen as more than a disabled person that played tennis. Reporters weren't interested in the rest of her life or who she was.

"There was no way, it seemed, to get across the real story which was that I played wheelchair tennis as a weekend warrior, competing at tournaments during the spring and summer for short two or three day trips, while working. The reporters didn't want to hear about my other life - the real job I had and all the other things I did with my life.

Such mundane facts seemed to put them on overload. One reporter put his pen behind his ear and just stopped writing. Another held up her hand and asked "Do you all play tennis or do you have a job? Which is it?" as if I couldn't do both. The resistance to any real facts or information was pretty strong.

Somehow no reporter ever managed to write a story about who I was over the decade I gave interviews. I guess that story just wasn't inspirational enough.

You see, I'm not really a wheelchair jock. I practically flunked gym in school. The only reason I have a wall of trophies for wheelchair tennis is because after my hands were paralyzed and I couldn't play classical guitar any more I got so mad I duct taped a racket on and started hitting tennis balls around one day. A coach saw me. He mistook my anger for athletic aspiration and set me up with lessons. And the next thing I knew I found myself competing in a tennis tournament.

That's the real story.

Oh, except for one thing. I managed to win a cross country skiing event too one year. How did that happen?

Don't even ask. But there is an article about it somewhere. And you can bet it was very inspirational."

Its great to have the subject's perspective on the So Courageous Phenomenon. Reporters don't really want to get to know them, they just have a story to tell and need information to support it. I'm sure most reporters do this with all their stories, not just with those concerning the disabled, but it's kind of scary to think that we can all be so quickly reduced to cleanly packaged inspiration and hocked on the media markets to attract viewers.

Today in Awesome: Ski Chair

Unsafe at any speed.

This ranks right up there with the crutch locked to the bike rack in my profile photo.

[Visual description: A white wire-framed chair with a handicapped symbol on it and fastened to yellow skis on the bottom]

You are what you talk about

I recently saw this post at Planet of the Blind and wanted to share it with you. I'm always pleased when other people echo the ideas I'm trying to convey. Thanks Stephen!

"...Over time the mere act of talking about the conditions of marginalization becomes a secondary form of abjection... No sensible person would advocate avoiding the use of civil rights language, whether we’re talking about women’s rights or Latina rights or African-American rights, or children’s rights. Yet it seems to me that I am increasingly uncomfortable as a representative of "the disabled community" or "the blind community"—not because I would eschew these political realities, but because the insistence that these are my subjects prevents me from being publicly a more reflective or complex person. I have a sensibility that’s different from what you might suppose... I am not a blind person when I listen to the opera or swim in the Baltic...My feeling is that we must go beyond identification based on race or disability or ethnic origin or gender or sexual orientation for only in so doing can we rebuild a progressive and thoughtful means of public engagement in our nation..."

I couldn't agree more. One thing that I'm particularly interested in is the way we might accomplish this. How do we advocate for disability rights while at the same time not being a person whose sole persona is "Mr./Mrs. Disability"? How do we change something without talking about it?

The only answer I have is to initiate change by example, or as Ghandi said, "Be the change you want to see in the world." One of these days I'll get around to showing you what I mean.

Book Review: The Speed of Dark

The Speed of Dark, by Elizabeth Moon, is built around the question, “What would happen if we had a cure for autism?”. Knowing that the issue would be the central debate of this novel made me suspicious, fearing that it would overdo the disability angle and result in some sappy conclusion. Initially the argument was overpoweringly obvious, but soon the characters overshadowed it and took me to a surprising place.

The narrative was crucial to teasing out all the subtleties hidden in the question I raised above. The resulting discussion was honest, subtle, and comprehensive. Ms. Moon used characters to represent different points of view e.g. the boss who thinks the autistic workers would be better off without their disability, or the friend who sincerely appreciates the main character for who he is, autism included. These characters are one-dimensional and don’t make for the best literature, but they facilitate the discussion.

Here's the dilemma. If we tell people with disabilities they the are just as valuable as anyone else, then when the option of a cure is introduced, can we ask them to take it? In most respects, the cure could “improve” their lives, but if there wasn’t anything wrong with their lives before, then why should they change? There is a great quote in the book that highlights this dilemma. “If someone told the last maples that they could change and live happily in the warmer climate, would they choose to do it? What if it meant losing their translucent leaves that turn such beautiful colors every year?”

Toward the end of novel, I forgot that it was exploring this conundrum and focused on the very human, multidimensional, main character making choices about his life, the way anyone would. In my past foray into disability literature with Planet of the Blind, I was impressed because while the book educated about disability, it also related on a simply human level; a fundamental commonality that we all share but which seems to be sometimes overlooked in the presence of disability. The Speed of Dark happily achieved the same connection because of the strength of the main character. Ms. Moon does an excellent job conveying his autistic style through the text, and I found myself quickly growing accustomed to it and feeling like I knew him. The greatest reward from this book is to go on a journey with the main character, see the choices he makes and why, and become more intimately connected with someone with autism. As for the greater question, we are left with a more complete understanding, but gladly no answer.

Understanding Pity

Pity is a hot topic on the disability blogs, usually in the context of “I don’t need your…”. Only recently did I come to a personal understanding of what pity was, and it had nothing to do with disabilities.

Over time, I’ve come to understand a certain friend of mine to be pretty annoying and sometimes impolite and rude. I call him a friend because I had always made conversation with him, found him at times interesting, participated in social events with him, and helped him when times were tough. This friend had been slowly wearing down my nerves as he unabashedly refocused all attention on himself. He would be selfish and sometimes mean, all for the sake of commanding attention. Now lest the pot be calling the kettle black, I also enjoy when attention is focused on me, but I understand that desire and try to keep it in check. This friend was not aware of what he was doing.

At one social event recently, the negative sides of his personality shone much more brightly than the positive ones, and I was not the only one upset with him. We tried as best we could to be polite and engage him gently even though he provoked us and made harsh and unnecessary accusations against those he called his friends.

In this most extreme of situations, I had the realization that surely the only thing that could drive someone to act this way was a deep need for attention, love, and friendship. It was at that moment that I decided to really be his friend. I could have given up on him, angry from his taunting. But instead I saw how much he needed someone, and how sad his situation was, to be so lonely and needing to be loved that he would go to such extremes. So instead of hating him, I felt sorry for him because he could not see the painful root of his actions.

In later reflection, I realized that this was an act of pity, a loving act where I claimed to know him better then he knew himself, and excused him for the wrongs he had done.

So how does this experience relate to disabilities? Many able bodied people see the disabled as people wearing their flaws on their sleeve, and they are compelled to help, to sympathize, and to show pity. The pity itself is not the problem. It is their presumption that a person with a disability has a problem, a flaw, something to be ashamed of, or be embarrassed about. They don’t realize that peoples with disabilities lead normal lives.

Therefore the fault in the able bodied population is not their impulse of pity, which can be a loving thing when carefully examined and used sparingly. The problem is the premise upon which their pity is founded, that a disability is a flaw. That is what the world needs to unlearn.

The Limits of Disability Activism

I have spent my time on this blog dreaming of a vision for the disability movement and disability education. My biggest flaw in this is that I have little personal experience with people who have disabilities. I recently came a little closer to understanding this missing piece of my experience. I learned the other side of the vision: the reality of what may never change about people with disabilities in our society.

My Aunt’s dog Sparky, with whom I spent a good bit of time as a child, recently developed a bone cancer requiring his front leg to be amputated. This canine experience with disability is admittedly a simplified version of the human one, but it helped me understand some bigger themes. Upon seeing Sparky the first time without his four legs, I was deeply sad for him. I could not look on him hopping around to retrieve a ball and feel glad, even though he managed quite well on his three legs. Despite all I have said about treating the disabled as equals, I was sad and felt pity for Sparky. I found myself thinking how courageous he is to still be chasing his ball!

I don’t think that any amount of education or societal change will eliminate this reaction towards a dog or a person. Whenever a loved one undergoes a dramatic change like loosing part of their body, we feel for our friend's pain, shudder the thought of that happening to us, and project those scared feelings though pity onto our friend.

This experience brought my own activism (if you could call it that) into focus. We cannot change the fact that we feel sad when our loved ones are hurt or forced into uncomfortable challenges. We can change our expectations of how the world will receive the disabled and provide them with the emotional and civic support (through infrastructure) that they need to reclaim full lives with their disability. That is the goal of our activism. I'm glad I'm not alone!