Saturday, July 19, 2008

Death and Our Movement

There is no nice way to say it: death pervades the disability rights struggle. It’s like saying the sky is blue. If there is a heaven, and this is only a metaphor, I’d like to believe that our fallen are somewhere where they live the lives they die for. But as it is, our people die every day, deaths of unfulfilled human promise, sometimes deaths of great pain and agony. Here on earth, they died as they struggled, while the living struggle on in their name.

These days I find myself thinking about Emmett Till and Dorothy Dixon. Till’s gruesome death, and his mother’s allowing his open casket portrait to appear in the media, fired the Black civil rights struggle. You can see pictures of Emmett at There are no pictures of Dorothy after she died---only a police mug shot.

And yet Dorothy’s death story is every bit as awful and stomach churning as Emmett’s. Burning, beating, starving a pregnant woman with a developmental disability… The horror neither begins nor ends with her. What about Ruben Navarro, who allegedly was administered Betadine while still alive, while a doctor waited to harvest his organs? Or Terri Schiavo, who was starved to death? The stories of the deaths are endless, stomach churning. And the truly nauseous thought is that a lot of people think that it is ok to let these things happen.

These crimes are never things that happen to “other people.” These crimes are things that happen to US. They happen inside homes and hospitals and courts of law. They happen in the media. I think they happen for very complicated reasons. Poverty is one. Privilege is another. Ableism definitely factors in. Often, sexism is also involved---whether a person is a “real” man or woman. Our people are being martyred for these things.

If I wanted nightmares, I could have them every night just thinking about Jaylen Brown. Jaylen was a 13 year old in Chicago who died this May of extreme neglect from his mother and his two 24-hour nurses. Besides bedsores, his tongue was covered with a blackish mold. Read his story at,0,6874643.story. He was being monitored for at least five years by outsiders…and still he died.

And there are other kinds of martyrdom whose victims are still alive. I think of the transman with a developmental disability who was raped in a New Mexico barbershop. I think of the Chicago area woman with cerebral palsy who was raped by a nursing home attendant. I think even of the high school girl who was raped by a gang in Melbourne, Australia, and whose rape was filmed, copied and distributed for sale.

I am sometimes sad that FRIDA has had to take up campaigns in response to some of these horribly terrible situations---and then I am heartened by remembering that that is what we are supposed to do. We mobilize on these issues because we must. And there is no one person who dictates that we must mobilize. Whoever wants to take up the fight can do so. It is a very tiring struggle, and a nauseating one, but the martyrdom of our brothers and sisters reminds us always that response is the opposite of silence. Speaking, we live; silent, we die.