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!