Get ready

“What immortal hand or eye, / Could frame thy fearful symmetry?” — William Blake, "The Tyger"

Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this," he said. “These are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted.

Robert F. Kennedy, Jr., Secretary of Health and Human Services in Godawful Terrible America

I’m not wishing people dead, but I hope I live past their deaths. You know what I mean. You know what I mean? I’m not raging all the time inside, but I’m angry enough and not afraid to express it. Here’s the thing. You’re going to read all the responses to this stupid statement from one of the most immoral, grotesque, stupid, rapey people in charge, and all of the indignant responses will be about how the statement isn’t true, that persons with autism do play baseball, hold jobs, write poetry (I have several brilliant poets on the autism spectrum in class) and so forth, but what I’m going to say is that my daughter, Sophie, will actually never pay taxes, never hold a job, never play baseball, never write a poem, never go out on a date, never use a toilet unassisted. In a doctor meeting some years ago, a director of a genetics department of a world-class teaching hospital, made a casual gesture toward Sophie, sitting in her “handicapped” stroller and said, “This is the tragedy that happens with uncontrolled seizures.”

The implication in Kennedy’s statement and probably most pearl-clutching responses says everything about this country’s grotesque obsession with money and production, with dividing people into “successful” and “unsuccessful” based on their output or accumulations, with those who would rather be dead than in a wheelchair, who look at me and the tens of thousands of others like me and think, “I could never do that.” Who think that being “dependent” at all on another is humiliating and burdensome. Who waited until 1990 to recognize the basic civil rights of people with disabilities. People who use wheelchairs, even children literally crawled up the stairs of the mighty United States Capitol for these basic rights. Did you know that?

Let’s fix these people so that they can be productive members of society instead of siphoning off resources from those that “deserve” them — “normal” children in schools, “normal” people in pandemics or natural disasters (like fires — remember the majority of the dead in the recent Los Angeles fires were disabled or otherwise incapacitated, left behind), “normal” people who work hard producing and paying taxes, whose lives have more integrity.

I’ve wrestled with all of this for thirty years. What is Sophie “entitled” to? What am I, her caregiver, “entitled” to? If I can afford $200 a month for diapers and wipes for a lifetime, should I pay it or take the “charity” of the state? Should I fight harder for her public high school to have a changing table in the bathroom?Should I hire a lawyer to ensure that she is able to access a curriculum to help her communicate? Why is Sophie alive? What is the meaning of her life? It’s very, very difficult in this culture to answer these questions given the sheer arduousness of navigating all the systems of care. Proving your disability. Demanding your rights. Apologizing for your frustration, your anger. Defending your child’s integrity to even live. I’ve learned to live these questions and to hold them with a finely tuned (and hotly forged) equanimity. Sophie is alive. Sophie has integrity. Sophie’s life has integrity. Sophie is loved beyond measure and, I know, loves the world and the trees and the faces that surround her. Does she suffer? Yes. Does she need fixing? She needs plenty of help. As do I. As do you. She is who she is. She has quite literally fought for her life, decided to stay. I don’t believe this. It’s not a religion. I know this.

I’ll tell you what Sophie is not. She hasn’t abused and preyed on women. She doesn’t use people. She doesn’t steal or grift. She doesn’t kill animals for sport or make mean jokes and mock good people. She doesn’t work for a monster. She isn’t a charlatan and a grifter. She is decidedly not a tragedy.

How do I end this? Here we go.

Fuck RFK’s eugenics and all those who think like him.