Thursday, January 8, 2009

Fighting over scraps

Our local school board, as many will be, is considering deep cuts to special education. Parents of regular educations students are chaffing at the rights protected by law that disabled children have. They do not realize that these rights are protected because forty years ago, a child like mine would not be allowed in school at all. 

This is a copy of the open letter I wrote to our board. 

Special education is expensive, as you and caregivers of children with special needs know. However, it is lean, not wasteful. It is expensive locally because special education has already taken a forty percent cut from the federal government. It is not special education that encroaches on the general fund, it is the federal government that encroaches on education as a whole. Please do not continue to refer to our children or their programs as "encroachments". This blames them for a problem that they did not create and over which they have no control. It is inflammatory and insulting language that disguises the true problem. 

I would ask you to be careful as you lead this community. When resources are scarce, and leadership is willing to play on people's weaknesses and fears, people will protect their own at the expense of others. Very few people rescued disabled people during the holocaust. Even in our own New Orleans, gravely ill and disabled people in hospital were euthanized before they were rescued.  Every one is pro-life and pro-child in public, but the terrible truth is that most people wish my child were not here. The easier and more polite way to say this is to demand that she get less money, fewer services and be less of an "encroachment" on more able bodied, promising children. I know that it is easier to say this than to admit that few care if she lives or dies. 

If I had any wish, it would be that she were whole and healthy. I wish for a cure for Rett Syndrome. But there is none now, and we play the hand we are dealt. So instead, I wish for speech generating devices, a nurse who is on campus when she does have a seizure, a teacher who can inspire her to learn, and do her best, even in her daily pain. I wish for friends on campus who know her name, and invite her to play. For the simple joy of being a child in a community that embraces her and does not blame her for the burden that her disability is. 

Thank you for making some of our smaller wishes for her come true. As small as they are, they may be the only ones she ever gets. That our community sacrifices for her and others like her is to our honor; society is judged by how it cares for its weakest and most vulnerable members. 

I hope that you care-- and that you choose wisely. We are not yet on a rooftop in New Orleans. The levies have not yet broken. I do not have to choose between my children, or between yours and mine. 

Warmest Regards, 

Gina Hale, mother to Emma, age 8