Tuesday, November 12, 2013

no more – a letter to suzanne wright

This letter to Suzanne Wright of Autism Speaks appeared on A Diary of a Mom. Autism Speaks cannot be left to portray autistics as damaged and in need of a cure and this mom gets that. Now only if Autism Speaks will get that as they presumptuously speak for autistics without having any autistics in their organisation.

no more – a letter to suzanne wright

My girl cracking herself up with scripts last night
I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”
I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”
My questioner cocked his head. “Okay, so how does that read on a sign?”
I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”
I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”
He was right. I do.
Because for me, trying to reduce autism awareness / education / advocacy into a soundbite is a farce. Distilling our lives and our mission into five words or less is an exercise in absurdity. This is not the stuff of slogans on billboards – this is messy and sticky and complicated and real. This is humanity.
From No Sides From Which to Choose, June 2013
A professor at a local college recently asked me to guest lecture to her Early Education class. They were covering Autism, she’d said, and she wanted to present a variety of real-world perspectives to them. I was thrilled to have an opportunity to speak to tomorrow’s teachers.
The students had some wonderful questions, but there was one from a particular young woman in the back of the room that I will never forget.
“How did you feel,” she asked, “when your daughter was first diagnosed with Autism?”
I took a deep breath and answered honestly. “I was terrified,” I said. “I sobbed. I retched over a toilet bowl. I thought, because of everything that I thought I knew about Autism, that there was no real hope of a future for her.”
I took a deep breath before I continued.
“Because, you see, I didn’t know. I didn’t yet have someone like me to tell me that the terrifying rhetoric out there about Autism wasn’t going to be our reality.”
What I knew about Autism came from things like this … (edited to add: PLEASE take care when clicking on this video. It IS NOT for viewing around children.)
A video created by Autism Speaks whose purpose was, in the name of raising awareness, to evoke pity by showing what they called the reality of autism in every day life. It was in that video that Alison Singer now infamously said, in front of her daughter (whose name I have redacted from the quote below):
That was a very scary moment for me, when I realized I had sat in the car for about fifteen minutes and actually contemplated putting {my daughter} in the car and driving off the George Washington Bridge – that would be preferable to having to put her in one of these {autism} schools and it’s only because of {my other child} the fact that I have another child, that we didn’t do it.
That was what I knew. And therefore, I was terrified. What I didn’t yet know was that Autism is one word, but there is no one Autism.
“What I didn’t know,” I told that student, “was that our lives were going to be far different from what we’d expected, yes, but that both mine and my daughter’s would contain as much laughter as pain, as much joy as frustration, as much hope as fear. I didn’t yet know. So what I felt was despair.”
In 2009, Autism Speaks released another PSA. This one was called I Am Autism. In it, a menacing voice-over purports to BE autism. This is what it says,
I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.
By the time that video came out, my view of Autism had begun to dramatically evolve. This is what I would write the day after it aired:
Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it [...]
I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that –  but challenges and all, autism is part of who she is.
I later wrote about how I called Mark Roithmayr, then President of Autism Speaks on the day that video came out. I wrote about our conversation, in which I told him that had there been Autistic people on their Board of Directors, there was not a chance in Hell that video would have seen the light of day. And I told him why.
Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?
I explained to Mark that for every single adult on the spectrum that I knew, Autism was not something that they could separate from themselves. That it was simply part of who they are. So if Autism is responsible for all of that destruction, THEY were responsible.
You don’t mitigate saying to an Autistic person, “It’s not YOU that are a burden,” by clarifying, “it’s just your Autism that makes you a burden.”
I wish that back then I’d heard the story that I would later repeat again and again, about the young man who had been told that Autism was a “bad guy” in his head, making it hard for the “good guy” (presumably his non-existent “non-autistic” brain) to do its work. I wish I could have told him how that young man had put a gun to his head because he was going to kill the bad guy.
I wish I could have told Mark that story so that he would have understood that you can’t kill the “bad guy” when the “bad guy” is your brain. That the destruction of Autism is the destruction of human beings.
Over time, I continued to work with Autism Speaks. They are too big, I reasoned, too powerful, to walk away from. I believed that I could make an impact in their messaging. In some ways, I like to believe that I did.
I believed that I could help to save my daughter and a generation of others from growing up believing that it’s okay to say that they never should have existed, that eradication of people like them is an acceptable goal, that, in many cases, they’d be better off dead. I believed that I could make them understand the irrevocable damage that they were doing to the people whom they purported to represent.
To that end, I sat down with Liz Feld when she took over the Presidency of AS from Mark. After meeting with her, this is what I wrote:
The bottom line for me is this – Autism Speaks has done a lot of good in their short time in existence. They’ve grown at an astounding pace – one that made the pains of that growth nearly impossible to manage. Despite their efforts to evolve at the speed of light, they have stumbled in many ways, but none that Liz didn’t acknowledge and seek to learn from. I have made a choice to remain engaged and involved with them. I believe that with or without me – with or without you – they will still be the face of autism for most of the country, if not the world. Given their platform, they will be the ones who have the power to shape public perception. I’m not willing to let them do that without contributing to the conversation.
Despite huge accomplishments and contributions to our community, they have a lot to prove to many of you before you will trust them to get it right. I get that. Truly, deeply, I get that. I simply hope that you will give them – and Liz specifically – the chance to earn that trust.
 I gave them the chance to earn my trust. Every time that someone referred to one of the videos I cited above, I said, “We have to stop harping on the past. They %$#&ed up. They get it. They’re trying. We have to look at where they are now.”
Last night, I saw where they are now.
Despite so much bottom-up progress, they are, at least from the top down, still in 2006.
Autism Speaks is holding a conference in Washington this week. I was invited to attend. For myriad reasons, I declined. Last night, Suzanne Wright, co-founder of Autism Speaks wrote an Op-ed ahead of the forum called Autism Speaks to Washington — A Call for Action.
It begins as follows:
This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
I read the words and I reeled. After what had felt like so much forward movement, we were back to mothers retching over toilet bowls. We were back to “lost” children and broken, bankrupt families. We were back to fear.
Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
We don’t get to use the numbers that way. We don’t get to twist people into narratives that simply aren’t theirs. To deny that Autism is a spectrum as vast and wide as the entirety of the human experience. We just don’t.
I was angry. I was hurt. I felt betrayed.
I was paralyzed.
But my autistic friends were not. They mobilized, as they do. They wrote incredible responses to the post.
Amy Sequenzia wrote:
Your words hurt me. I am an Autistic adult, yes, I have epilepsy, but this is not autism; yes I have GI problems, but this is not Autism. My family is living, happily and proud of me. I am non-speaking and I am living. I am not lost. The difference is that you cannot love autistics for who they are, so you attack us. Why did you create an organization that spread fear of and hate for autistics? Why don’t you talk to us, or better, listen to us? Your words are full of viciousness. My family sees the sun shine and they see me. They encourage me to be the best I can be and I learn every day. I cannot eat by myself, dress myself, I am not safe by myself but I have plans and I will have a future because my community has my back.
I feel sorry for your grandson. I cannot imagine my grandmother demonizing me the way you demonize him.
I hope you apologize, at least to him. He hears you, you know? The same way we do to and he will, one day, let you know how much you hurt him.
The only fear we autistics have is of people like you using this hateful power to get rid of us. Because you cannot “end” autism without ending us
Ibby Grace wrote:
When you quote the inflated numbers of us, you include a wide variety of those of us you are trying to erase. Why do you not want actual Autistics anywhere near you? Because we have read your financials and know how little money you devote to actually helping people and how highly you compensate yourselves? You use this horrible language to emotionally blackmail loving families into giving you money and time they scarcely have, to further your twisted agenda of eugenics and greed. Are there no mirrors in your house?
 I knew that I needed to write too. And so I did.
Dear Suzanne,
Three million children have not gone lost. My child is right here. This was her with her Daddy last night. She was scripting shows for nearly four hours straight. We decided to join in. We laughed together.
This is my daughter. She is not lost. She’s right here. And she can hear you. Whether or not you choose to believe that Autistic people can hear you, they can. How do I explain your words to them? To my daughter? How do I tell her what you mean when you speak of her parents and you say, “ How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?” How do I tell her that her Mama does not see her as a burden and never, ever will? How when you are telling her the opposite?
Do you remember when you met her?
Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.
Brooke doesn’t look up. She doesn’t stop stripping her stick.
Dig. Pull. Dig. Pull.
Our visitor reaches out a hand and cups it below Brooke’s chin.
I freeze. Oh God.
She uses the hand to pull Brooke’s head up by the jaw.
A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …
She does scream, but not in the way that I expect.
“I HATE BEING TOUCHED!!” she shouts.
I am flabbergasted.
Words. Self-awareness. Communication. Self-advocacy.
I know the sentence will need to be reformatted. But I am drenched in pride.
I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.
Our visitor is undaunted.
“I just want to see that beautiful face,” she says. “Lift up for me.”
I am stymied by etiquette. By deference to our host. By generational difference. By convention.
Brooke is not.
She lifts her head as instructed. And growls.
Do you remember that the someone in that story was you? I do. I remember feeling so damned violated for my child. I remember feeling trapped by your hospitality and your age and what? Your social standing? I remember the moment of abject panic when it quite frankly took everything I had not to smack your hand away from my child’s face.
You grabbed an autistic child’s face to make her look at you.
And then something miraculous happened. My girl spoke for herself. “I HATE BEING TOUCHED!” she yelled. God, I was so proud of her. So instead of leading, I followed. I loudly praised her for telling you – with words – not to touch her. I repeated her words to make sure you’d heard them, loudly and clearly, “I’m so proud of you,” I said, “for telling Mrs. Wright that you DON’T LIKE TO BE TOUCHED.”
It was in the car on the way back home from your house that Katie would explain to her sister that she really does like to be touched, but not without permission by people she doesn’t know. And it was then that she would turn to me, fuming and indignant and say, “Doesn’t that lady run the biggest Autism charity in the world? I don’t get it. Does she even know anything at all about autism?”
“Apparently not our Autism, baby,” I said then. “I don’t get it either.”
Your colleagues invited me to the summit in DC. And I was torn. I wanted to be there – to talk to every politician and every DC power player who you were talking to. I wanted to follow up and tell them – she doesn’t know our Autism. She doesn’t speak for my daughter. She doesn’t speak for my Autistic friends. She sure as hell doesn’t speak for me.
Because they need to understand. They need to know that while it is absolutely true that there are Autistics and their families in desperate need of immediate support, and that there is indeed an urgent need for both short- and long-term plans of action for them, they are not to be feared.
They need to know that autism is only a death sentence if we continue to allow people like you to spew rhetoric like this from on high – rhetoric that demonizes and dehumanizes our loved ones, telling them that they are a tragedy, a burden —  a thing to be feared rather than people to be included, supported and loved.
I can’t do it anymore, Suzanne. I can’t stay silent while we slide back into fear. I can’t let mothers retch over toilet bowls and I can’t, I won’t, let my child believe that she is a tragedy.
So I will do exactly as I did the day at your party when you grabbed my child’s face. I’ll follow the lead of the people who should be leading. People like Amy and Ibby and Ari. People like my daughter.
I will stand behind them, back them up, and help to ensure that you hear their words, loudly and clearly.
No more.
Ed note: Special thanks to Lydia at Autistic Hoya for transcribing the video above.