What do you see?
[W]e have to examine *illness* and *identity*, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition.
Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.
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.
And this is why I am so attracted to this idea that what we need is an entirely new vocabulary with which to describe it. One that serves not to further entrench ideologies at the poles, but that instead allows for the acknowledgement that the poles — these seemingly contradictory views of autism – indeed of the human condition itself – can not only exist concurrently, but – and this part is where it gets radical – compliment each other.
I have a close friend who is bipolar. For a time, she was very heavily medicated. And while the meds succeeded at keeping her more dangerous sorties into the extremes of her existence in check, she found that some of her more fundamental attributes had disappeared along with them. Her creativity, her yearning for beauty, her unique expressions of joy.
And she asked, as I do now, Isn’t that – the very journey from the highs to the lows, to some degree, the crux of the human experience? Aren’t the highs, or at least a true appreciation of them, dependent upon exposure to the lows? Are we not designed as iron – as imperfect human beings to be forged with the heat of adversity into steel? Are we not compelled to explore the outer reaches of our humanity in order to discover and leverage to our best advantage what lies in the middle?
And what happens when we continue to narrow the band of normalcy by trimming the extremes little by little until we are left with … well, what? A sanitized version of the human experience that some mysterious panel of arbiters deems acceptable? That they believe has just the right ratio of pain to joy? Of recognition of personhood to tolerability by the mainstream? Where does that end? And who sits on that panel? Me? You? Our children?
When talking about all of this, my friend said to me, “Cures are amazing because they are absolute and unforgiving, and by definition they fix what is wrong. But what has always freaked me out about the idea of a CURE for bipolar disorder is that there is no baseline me. Since no one can tease out the disorder from the order that is me, I will just stay with what I’ve got.”
“Since no one can tease out the disorder from the order that is me, I will just stay with what I’ve got,” is poignant and thought-provoking and a beautiful illustration of how disability and identity co-exist, but as a slogan it would really stymie donations to an organization seeking a cure, wouldn’t it? Wouldn’t exactly help the cause on a sign at a fundraising walk for autism, or for bipolar disorder, for that matter. Which is, I would argue, at least in part, why organizations like Autism Speaks, who rely on the public’s largesse for their existence, cling to the disease model of autism. Because fear sells. Ambiguity doesn’t.
It’s why they have to remind us again and again with dark and foreboding rhetoric that THERE IS NO CURE FOR AUTISM even though the vast majority of autistic adults want no such thing for themselves. Because neither “Celebrate Diversity! Mitigate Disability!” nor “I’ll stay with what I’ve got!” raise money. Fear, desperation and pity do.
On the flip side, I’d argue that it’s also why we don’t often hear advocates of the neuro-diversity movement talking about the dark side of self-injury or the violence that can and does so often stem from the constant frustration of not being able to effectively communicate one’s most basic thoughts with those around him. Because it doesn’t fit the narrative of pride and dignity and the right to self-determination that is so vital to share in order to counteract the destructive messages about autism that come at autistics from every other angle. Frankly, it’s the same reason you don’t often hear about those things from me.
But neither life nor advocacy are sustainable at the poles. My friend’s life is not tenable without medication, without the mitigation of the disabling aspects of her condition. But that does not mean that she is willing to abide the cost of a “cure” that leaves her bereft of the parts of that condition that make her who she is.
So what do we do? How do we create this centrist language of which Andrew speaks? How do we forge a paradigm that shows not just one or even both sides of the coin, but which illustrates their simultaneous existence by shining a light on the way that, in reality, the coin forever spins on its axis?
Because that’s it really, isn’t it? Real life, and autism as a part of real life, is neither celebration without pain nor pain without celebration. It is neither the sole responsibility of the world to accommodate difference nor those with differences to accommodate the world. Autism successfully lived is neither identity without acknowledgment of disability nor illness without self-esteem built through pride.
A new paradigm beckons.
One in which heads, tails and everything in between can spin on their delightfully crooked axis and we don’t ever have to choose sides — because there are no sides from which to choose.
Ed note: Please continue on here to learn along with me as I talk about why some of this post was very hurtful to some people I really care about. Thank you.