The White House saga continues …
We left off with me turning the floor over to Katie, the autistic young woman who had come to the White House to advocate for herself and her community. It was obvious that sitting in the room was beginning to take a toll on her, but she was keeping it together remarkably well. I looked again at the button she wore on her lapel. No Pity.
Katie spoke about words. She spoke about the demonization of autism in the public discourse and the irreparable damage that it can do to the psyche of those affected by it. She spoke of the environment that it creates for those who have autism – one of fear, of mistrust, of pity. She spoke of a public that views autism as a tragedy and her desperate need to change that perception.
She spoke of respect, of dignity, of recognition of humanity no matter one’s level of impact. She spoke of her difficulty with words like ‘disease’ and ‘disorder’ and ‘cure’ in reference to this thing that she believes is an integral – if not wonderful – part of who she is.
And I understood. Her words resonated on every level. I thought of my girl, of course. I thought of the day at the Autism Walk in October when the very well-intentioned man speaking into the microphone referred to autism as a ‘crippling disease.’ I thought of how desperately I’d hoped that Brooke hadn’t heard him, knowing of course that she, on some level, hears everything.
Our children are vulnerable. The words we use when we talk to them and about them matter. Depression runs rampant among teens and adults with Asperger’s and other so-called ‘high-functioning’ types of autism. These kids already grow up feeling like square pegs in round holes, like they live on the outside looking in on a world that they don’t understand and that clearly doesn’t understand them.
To then tell them that this thus far inextricable aspect of their being – what so many see as a basic difference in their wiring – is fundamentally evil, in need of eradication, makes them damaged or broken or somehow less than anything or anyone else, well, it’s no wonder so many of them struggle with low self-esteem, depression and worse.
My friend, John Robison wrote about this last year in a post called, I am Autism Too – Thoughts on Neurodiversity and the Cure. I thought of his words as Katie spoke.
For many of us on the spectrum, a parent’s stated quest to ‘cure’ autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad and half Mom. So when Mom tells me Dad is no good, what is she saying about me?
If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.
He goes on to say,
There is nothing wrong with wanting to take away a disability. That’s a great goal and one that I fully support. What’s wrong is making something out to be ‘bad’ and then failing to take it away; leaving us with the ‘bad’ irrevocably bonded to us.
Moral judgement has no place in the world of remediating disability.
As Katie spoke, my heart ached for the adolescent that my child will soon become. For the teenager who will struggle with her differences. For the woman into which she will someday blossom. How will she put all of this together? How will she process these words? How will hearing that this fundamental part of her being is ‘a crippling disease’ affect who she will become and how she will feel – not just about her autism, but about herself as a human being?
But then what about Idil’s son? What about the eight year-old Somali-American boy, who like so many of his peers has no words? How does Katie’s No Pity campaign affect HIM?
What about all of the kids who have no voice? The ones who have no viable means to communicate their most basic needs to the world around them? Who live in a state of constant frustration? What about those with no sense of danger? Those whose constant melt-downs become unmanageable and unsafe? What about those whose self-injurious behaviors become so severe as to cause permanent damage to their homes, their bodies, their brains? What about those who don’t sleep? Whose diet is limited to the three things they can tolerate? What about those who paint the walls with their own feces well into their teens? What about those who run? Who drown in nearby ponds because no one could find the child who couldn’t respond to his name? What about those who are abused by people who know they can never report their crimes?
How does the public discourse affect THEM when it turns to talk about the gifts of autism? About the happy rainbow of neurological differences? How does it affect their parents’ desperate quest for help and resources and answers when the public is being told that autism is something to be celebrated? When they live a life in which the disability looms so large as to obliterate the hope of finding something – anything – to celebrate in their autism? What does No Pity mean then?
Above all others, this has been the topic that has haunted me since my time at the White House. I’ve been turning it over again and again, worrying it between my fingers, slowly pulling its threads to see how they are woven together, to see where they come apart.
Autism is one word, but there is no one autism.
The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.
I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.
For my daughter.
For Idil’s son.
For all of us.
To be continued ..