Oh, guys. I’m all over the place this morning. You see, comments and questions and, “But you don’t understand”s are still steadily streaming in in response to my post about the damaging rhetoric that Autism Speaks insists on continuing to use despite the passionate protest of Autistic people and their families.
And so, while I’m dying to tell you a neat little story about Brooke’s teacher from the other day, I can’t do it without acknowledging the elephant in the room.
And you know what? I just realized, as I typed that last sentence, that the little story IS the bigger story. Holy crap. Stay with me, okay?
On Wednesday morning, I walked Brooke into school so that I could chat with her aide, Ms J. I wanted to let her know that we were going straight from school to the dress rehearsal of Katie’s play, and that I knew that Brooke was anxious about it. Those kinds of things are important to Ms J. Understanding how Brooke feels matters to her. Which is why she’s so good at what she does.
When we got to the classroom, one of the teachers, Ms. K, told us that Ms. J was absent. Brooke took a moment to process the information and then asked, “Is she sick today?” Ms. K told her that she didn’t know. Brooke then asked, “Will you be the role of Ms. J today?” Ms. K explained that Ms. N and Ms E. would be coming in to help out.
Ms K then sent Brooke to her desk to take her chair down. I took the opportunity to tell Ms. K what I’d planned to tell Ms. J.
I quietly told her that I knew that Brooke would be anxious about the play. That we had to leave right at dismissal and head over, and that I was concerned about how it would all play out, especially given that she wouldn’t have any break in between school and the play.
Ms. K said, “So do you want us to make sure that she has some downtime at the end of the day?”
“Oh my God,” I said, “if you can, YES!”
I hadn’t really thought about the fact that downtime could happen IN school, but of course it could.
She said, “We’ll just make sure that the last thing she does before dismissal is something she likes and finds relaxing – maybe some time on the computer to play one of the learning games she likes.”
“That would be FABULOUS,” I said, probably a little too enthusiastically. “Thank you!”
And off I went, sort of in love with Ms. K.
You see, the reason that this story is not as small as it seems is that at the crux of it is the fact that Ms. K was looking at the day FROM BROOKE’S PERSPECTIVE. She saw that Brooke’s day didn’t end when she left the school. She saw that she would need to pace herself in order to be able to handle what was coming next. She SAW the world through Brooke’s eyes. And she did it as though it were the most natural thing in the world. Which I dare say it can be, if we’d allow ourselves the habit.
On the way to pick Brooke up later that day, I got a message from a friend. We’d been in the middle of a pretty heavy conversation about Autism Speaks, Mrs. Wright’s words, the community response, and the big old tangled mess left in their wake.
What follows might be a little awkward as I can only share my half of the conversation as I didn’t ask permission to use his and I’m really compelled to get this out, but please bear with me. I’m going to do my best to make it all make sense.
Autism Speaks recently announced a fundraising campaign with a company called Sevenly, who, from what I understand, does fabulous work raising money for various causes. In an effort to educate those participating in the campaign, a number of Autistic activists posted their views on the Autism Speaks Facebook page. The comments were passionate, and in some cases, pretty harsh.
It is not uncommon in these comment threads to find statements such as, “You are supporting an organization that sanctions the murder of autistic people.”
Yeah. It’s pretty dramatic stuff.
And many parents say that it’s clearly just melodramatic, venomous bunk because no one at AS has ever said that they hate their child. Nor have they called for, as some put it, an autistic holocaust. These are people who love their kids and want to make life better for them.
I don’t disagree that these are people who love their children. Fiercely. And who want to make life better for them. I know them. And I know that to be true. I also know that many of them would never use the words that Mrs. Wright used. I also know that many of them believe that the only way to get the help that we, as a community, need is to use that kind of rhetoric. I don’t. In fact, I think that using that kind of rhetoric to get help is, well, not helping.
But it’s bigger than words. As much as words can hurt, it’s not just phrasing that’s problematic here. The words are reflective of the goals. And the goals, not just the words used to describe them, are the reason that it’s not nearly as far a leap to “sanctioning murder” and “calling for an autistic holocaust” as you might think.
This is some of what I wrote, edited to (hopefully) make sense in this format.
The stated goal of Autism Speaks is the cure and prevention of autism.
What if YOU were autistic? What if you believed that autism was such a big part of your identity that it was as unchangeable as your ethnicity, your eye color, your height? What if you had been bullied in various ways throughout your life for being different? What if, through that process, you’d begun to realize that the problem wasn’t with you, but with those who hurt you? Who found you to be such an intolerable reminder of their own insecurities that they lashed out at you? What if you’d come out the other side with a steel will, and, of all things, pride in your differences? What if you were a non-speaking Autistic person who had found a way to communicate your thoughts by typing? What if, when you did, when you said, “I am proud of who I am. I need help but I do not want to be “cured” of something that is central to ME?” And what if, when you did, no one listened?
What if the biggest autism advocacy organization in the world was spending the money it had raised in the name of helping people like you on finding a way to cure you from something you did not want a cure for and to prevent people like you from existing in the future? Before you get defensive, please, just for a minute, let that sink in. How would it feel?
How would it feel if your parents said, “I love you so much that I want to fundamentally change you in order to relieve your suffering,” and “I want to make sure that no one like you is born in the future because it’s just too hard.”
It’s not out of cruelty. It’s not. And I don’t believe that it’s driven by some selfish desire on the part of parents to make their own lives better at the expense of their kids. I know these people and by God, they love their children. And they see them struggle. And that hurts like hell. It is awful to see your own child in a state of constant frustration and pain.
But helping doesn’t have to mean “curing.” We can help people without changing who they are. Besides, what is a “cure” anyway? I’ve said a thousand times that Autism is one word but there is no one Autism. Considering how radically differently people are affected by it, what does “cure” of it really mean? I’d argue that what it really means is mitigation of disability.
We can look for ways to mitigate the disabling aspects of autism – communication challenges, sensory processing issues, etc. We can seek solutions to the often co-occuring conditions that are far more disabling than autism itself – Epilepsy, GI issues, challenges sleeping, etc.
But instead, no matter how many autistic people stand up in protest, Autism Speaks continues to chase the goals of cure and prevention … of them.
So as extreme as it may sound when autistic activists say that AS is calling for an autistic holocaust, I get it. Extermination of a group of people doesn’t just happen by killing them; it also happens by preventing their birth.
And when they jump to “You sanction our murders,” I get that too. Because matricide and attempted matricide of autistic children and teens is in the news with frightening regularity. And every single time, the absolutely overwhelming response from the media is wholly sympathetic to the parents, citing “the challenges in raising these kids” as per Autism Speaks’s rhetoric about the burden that befalls their families. And, most horrifyingly, the perspective of the kids themselves, the victims of these unthinkable crimes, is completely absent from the conversation. I don’t think it’s really a big stretch to say that those who devalue autistic life by only talking about the negative effect it has on everyone else have some culpability in that.
Do I think it’s the most productive or civil strategy to shout down good people who think they’re doing the right thing? No. I don’t. But do I get why they’re doing it? Yeah. I do. And do I get why their response is so visceral and passionate? Yeah. I really, really do.
Because when people like you are murdered and the immediate response is sympathy for the killer, it’s terrifying.
And when the people who are raising money to, in theory, be your voice, aren’t hearing your very real and very valid concern about their rhetoric contributing to your lack of safety and security, well, you finally start screaming.
The other day, I wrote the following on Diary’s Facebook page …
A reader left a comment here last night that I want to scream from the rooftops, paint on a billboard, put on the side of a city bus and fly on a banner behind a plane.
Comment: “The parents I know of so-called low functioning children are getting sick and tired of their beautiful amazing awesome kids being used as pitiful and pathetic examples of how awful and intolerable autism is. This is NOT about where a person is on the spectrum. ALL autistic people deserve to be respected, heard, and treated as FULLY HUMAN. We need to be mindful of THAT. As (another reader) said – there can be nothing worse than being viewed as absent – that applies equally to ALL autistic people regardless of how severely they are affected. In fact, the more severely affected an autistic person is (the more their ability to communicate in conventional ways is affected), the more vulnerable they are to abuse and mistreatment by society as a DIRECT RESULT of the fear mongering rhetoric of Autism Speaks – because how will they report it, and who will even CARE about the mistreatment of an empty, burdensome, not-even-real shell of a person. This is about human dignity and respect – and that is a UNIVERSAL right, not a right of only the so-called high-functioning.”
None of this is about where people fall on the spectrum. There is no mystical line where severity of condition (be it the challenges of Autism or otherwise) trumps human dignity. EVER. This needs to be heard. This is not about “high” vs “low.” It never was. It’s about dignity.
Recognition of dignity = safety.
I cannot, will not, continue to support the message that any level of need, no matter how severe, trumps dignity, trumps safety, trumps a right to self-determination wherever possible. Not in good conscience.