Sunday, March 12, 2006

Yesterday I read Too Late to Die Young by Harriet McBryde Johnson, a disability rights activist. She is a writer, lawyer, and disability rights activist in her 40s who has a neuromuscular disease and gets around in a power wheel chair.

This is not an inspirational book about overcoming disability with pluck, courage and faith, or about sharing with others the meaning one has found in one's own suffering. Not at all. These are stories from Harriet's life ("nearly true tales from a life" is her subtitle), adventures told with wit and intelligence. She writes really, really well.

(I am painfully conscious of how much less sharp and incisive my writing is. I am sinking into dust jacket language writing about her book. I am also conscious of not wanting to write and rewrite this till midnight.)

Harriet Johnson has picketed the Jerry Lewis telethon for children with muscular dystrophy for the last 14 years running. Why? Because she says it dehumanizes people who are disabled. It turns them into objects of pity, or inspirational examples, and by doing so, takes away their individuality, their right to be recognized as the whole persons they are.

I am not a disabled person, at least not at the moment. But I know exactly what Harriet Johnson is talking about, because it has happened to me, though in a different way. I have faced some significant family challenges in the past five or six years. And during that time, people have tried to buck me up by telling me how strong I am, or what a saint I am. An inspirational example.

I absolutely hate this. Because as soon as that halo appears floating over my head, I become someone different from everyone else. Those other people don't have to think about the specific difficulties I face, and those other people can stop feeling vulnerable. My sainthood protects them from being struck with troubles themselves.

A couple years ago I talked about this with someone whose husband had recently died. Her grief and loss were intense, beyond the comprehension of casual friends. She, like me, saw many ways in which people kept their distance from her experience by focusing on her strength or the wisdom of her choices.

When I was young, a teen, a twenty-something, I was sure that it was only the families that were strong enough to take it who had really bad things like cancer happen to them. These were the people who would know how to bear up. And then cancer struck my father, and we were the ones who had to bear up. I learned quickly how much confusion, conflict, and despair are behind that facade of strength.

I am talking Lutheran strength here, the kind that says we don't fear death because we have faith in the Resurrection. The kind that is reluctant to reveal a chink in that armor of faith, and so is embarassed by grief and by human weakness. Where does a theology of a suffering Christ fit into all this? A question for another day, another post.

I have wandered a long way from Harriet McBryde Johnson, and I have perhaps distorted her protest story with my own prickliness.

Stereotypes of all kinds, positive or negative, stand in the way of us getting to know and learn from each other. And they stand in the way of telling--nearly true tales.

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