April 2, 2014

A Call for Accountability

Posted in Uncategorized tagged , , , , , at 1:27 am by chavisory

To Autism Speaks and its supporters, for Autism Acceptance Day~

There’s a conversation that plays out over and over again, in the wake of the release of a PSA, press release, blog post, or video, painting autism in conventionally negative and dehumanizing terms.

Autistic people object that those descriptions do not fairly reflect the realities or value of our lives.  That while, yes, often it is hard, that’s not all our lives are.  That characterizations of “epidemic,” “tsunami,” or “national catastrophe” devalue our lives, and that we suffer when attacks on “autism” fall on us.  Which they do, always, because autism is not separable from us.  That we might wish some things were easier, but those issues need to be addressed with the complexity and nuance that they truly require to understand.

And invariably, someone will make the excuse that such rhetoric is necessary to raise awareness, to make the public feel a sense of urgency, to keep people interested, to get lawmakers invested in these issues, to raise money.

“But how does that fit on a billboard?  How do you put that into a one-line slogan?  Or a 30-second PSA?”

Guess what:  That is not our problem to solve.  It is not our fault, our job, or our responsibility.  It is not an excuse for you to malign our humanity and our worth.

It is not okay to demonize us and call our existence an epidemic, a tragedy, and a national disaster because that’s easier to fit on a billboard.

It’s not okay to instigate pity and fear against us because that’s easier than asking people to work to understand us more deeply.

It is morally and intellectually lazy, is what it is.  Since when does something being easier make it right or okay?  That’s what you’re saying.  That it’s easier on you to talk about our lives this way, so you get to, and our objections are meaningless.

Only…many, many autistic people have made themselves very clear about how awareness campaigns like this have done us more harm than good.

We understand that therapies cost money, that families need insurance coverage, that parents deserve respite, and that school systems need financing for the support services they’re required to provide.

But the beliefs about us that are inculcated—in the general public, in our family members, in our educators and therapists—by these kinds of ad campaigns, negatively impact the way we are actually treated by the medical establishment and in schools and therapy programs and by the people closest to us.  You don’t make sure a vulnerable population gets appropriate help and support by spreading vicious falsehoods about their condition, presenting them as objects of pity rather than full participants in their own lives, or disparaging their input on the actual effects of what you claim to be doing on their behalf.

The words you use about us have real-life consequences for us, and they’re not the ones you claim to intend.

This rationalization is arguably even more dehumanizing than the objectionable rhetoric itself—that we and the fullness of our lives are reducible to props for your awareness campaigns.  That our objections to misrepresentations of us don’t matter because they’re inconvenient to your ability to come up with billboard slogans.  That next to you being able to raise money in our name, the fact that the manner in which you’re doing so actually hurts us, is of no consequence.  That our ability to be treated like real, whole, present, self-aware, not stolen or missing or disappeared people is far less important than you having an easy time coming up with a catchy awareness campaign.

It is not our responsibility to be a sound byte for your convenience.  It is not our job to be the story the public wants to hear.  It’s not your kid’s job.

I won’t have to wait long for objections of ”But the low-functioning!  But the non-verbal!  But people who don’t have your abilities!”

IT’S NOT THEIR JOB, EITHER.  They are people; they are not storytelling devices, set dressing, blank slates or empty shells.  They have thoughts about their own lives; just because you don’t know what they are, does not give you the right to use them like that.

 

Autistic people talk and write a lot about our struggles.  Parents and families who are with us about acceptance and respect, talk openly and movingly about their challenges and their autistic kids’ obstacles.  We support each other in the hard things as well as the joyful.  You can do that without devaluing our lives or resorting to antiscientific, eugenicist alarmism.  The bloggers, activists, parents, and families of the neurodiversity community prove it every day.

Here’s what I think:  If you can’t figure out how to portray our issues and make a compassionate case for our support needs, succinctly and without resorting to dehumanizing us or devaluing our lives, then autistic people are not the ones who lack creativity, resourcefulness, communicative abilities, or empathy.

And just because I can’t necessarily give you a pat, convenient answer right now, on the spot, of how to best represent neurodiversity and autism acceptance in an easy-to-swallow PR campaign, does not make it an unsolvable problem that excuses your continued public relations war against us.  I’m not in public relations or marketing because that genre of writing is not my gift.  But it is somebody’s.  In fact, I’m pretty sure this is something people actually go to college and grad school to learn how to do well—to represent the message you wish to convey to the public cleverly and concisely.  I’m pretty sure that businesses routinely actually hire and pay large salaries to people who do this professionally.  I’d be willing to bet that you already do so, in order to craft the message you have so successfully and insidiously.

Better messages have been crafted in social media campaigns, for the purpose of countering your own, by autistic people, neurodiversity bloggers, and parents with no budget, training, or free time.  Who are disabled, mentally ill, in chronic pain, who work full-time, who are in college or grad school, who are raising high-needs disabled children, or some combination of all of the above.  Other organizations don’t seem to have a problem, either.

So you can do better.

The problem is not that the right message is too hard a story to sell; the problem is that the message you actually believe and wish to propagate is wrong.  It’s not that you couldn’t do the right thing if you put your minds—and voluminous advertising budget—to it; it’s that you don’t really want to because you don’t believe in it.

You have the budget to be making media campaigns like this, if that’s what you wanted.  You have the resources to be spreading awareness like this:

It’s not as if the truth isn’t dramatic or interesting enough:  That we have always existed, but only in recent decades provoked this intensity of mingled fascination and alarm.  That our society has quietly and systematically marginalized and excluded us on the basis of our cognitive, movement, and communication differences for centuries, pushing us to survive on the outskirts of society. That with the understanding of these traits as neurologically-based rather than the result of kidnapping by fairies, the stigma and scapegoating has actually focused and intensified.

That generations of us have been written off as uneducable and incapable of communication, disappeared and institutionalized. That it is still happening even though professionals and policy-makers have had every opportunity to know better by now.  That we are abused and bullied at devastating rates.

That under such hostile circumstances, some of us have been the foremost geniuses of science, math, music, and art.  We have made some of the most revolutionarily important contributions to humanity in physics, technology, and engineering.

We keep surviving, keep creating, keep loving, keep standing up for each other, keep believing we are actually worthy of a future.  We remain obsessively joyful.

That we’ve been so misunderstood and misinterpreted that most popular and professional characterizations of us are practically the opposite of the truth.   That it is routine and accepted for our families to be taught to fear and hate the way we are.  That you do not even begin to understand what you would rob the world of, to have it bereft of people like us.

I think that’s a pretty fascinating story, and urgent and important.  I know it’s more astonishing to me than practically anything you could make up.  It’s just one that requires a bit more self-reflection and active listening from your target audience than the easier one of rallying to defeat a common enemy.

As to how it fits on a billboard?  I don’t care.

If you are listening to our stories, if your intentions towards us are truly good, stop making us the targets of your laziness and lack of creativity.

The way we are is not the enemy.

17 Comments »

  1. […] is a secondary to awareness. When Autistic people are saying that “awareness” is patronising and even damaging, a focus on acceptance is needed then such huge charities must respond. I might have shared the […]

  2. autisticook said,

    I think this is one of the best pieces you’ve ever written. Wow.

  3. This, thank you.

  4. Sandy said,

    This is just so so much awesome! Thank you!!!!

  5. tagAught said,

    Thank you, Chavisory! Will definitely recommend this post.

    • tagAught said,

      Have shared on both Twitter and Google+.

      :) tagAught

  6. […] A Call for Accountability – this is a MUST READ regarding this issue. I can’t pick just one thing to quote – the […]

  7. […] A Call for Accountability – Chavisory’s Notebook […]

  8. Zr said,

    “There is no Royal Road to autism.”

    How’s that for a one-line slogan?

  9. Lori Shayew said,

    Wow! Well said, Chavisory. You hit the nail on the head! This morning in my mailbox. I found a new magazine with an ad from AS. The title, “Thousands Will Take Steps to End Autism” (re:Autism Walk) REALLY?? I don’t think so! As you said, you can not separate it from your being. It really disturbed me to read this “Ad” as this does NOT represent Truth. Thanks for writing your post. Perfect timing!

  10. Love. Acceptance and Understanding… not “awareness”

    Thank you!

    –Leah, a independent, successful 38 year old autistic woman.

  11. Patricia said,

    Reblogged this on Spectrum Perspectives and commented:
    This post is a must read for every person that has ANY connection to autism at all. I think it’s especially important for professionals involved in treatment disciplines, fundraising, education, etc. The internet has given us an important gift – access to the thoughts, feelings and experiences of autistic people of all ages, walks of life, abilities. We need to listen.

  12. Michele Muller said,

    I agree with A Call For Accountability. I don’t have autism but I love people who do. Keep speaking up and find a way to be as visible as possible. I have seen very few with asd speaking on national tv; whether it’s been on a serious news program or a topical “human interest” show your voices have yet to be in our faces. Obviously the asd community is rich with passionate activists. It’s easy to find you on the internet if I’m looking. Get out there and be more visible to those who aren’t looking for you.

  13. Bravo! I 100% agree with everything here. So clearly stated. I’m quite frankly sick to continue hearing of the blatant misunderstandings of the parents, medical professionals, and organizations like Autism Speaks. The child or adults on the spectrum are dismissed as the only thing these people of so called “authority” want is to feel comfortable, so the drugging and dismissing begins. So the “cure that, stop that behavior” begins. The voice and reasoning behind actions of the autistic are not even considered. The same people who won’t make eye contact with a homeless person or one utilizing a wheelchair on the street are the ones telling the world how devastating we are – that we often have difficulty making eye contact. The same people who are saying one thing and meaning another are the same people projecting to the world the tragedy of us autistics, that many of us don’t speak until we’re 4 or 5, or perhaps never. Keep it up, speak your truth, our truth. This is how revolution begins and change takes place. :^) Cheers~ b. PS I would like to ask your permission to re-blog this on my own blog, brandynightingale.blogspot.com. Please let me know and I’ll do so (or not!)

  14. This is a fabulous piece. As a parent of a 12 year old girl with Autism, I have to walk a very fine line. This is how it goes… If I speak highly of my child’s accomplishments and utter awesomeness then some people think “oh, see Autism isn’t that bad. She’s doing fine. When really it is a daily struggle as you know. Even better, if I talk it up too much then she won’t receive the programs and help she needs. So, the state has to see her as being disabled. So, when it comes time to fill out all the paperwork I have to make sure I focus on all of the things she can’t do. Which is painful. Especially when she has come SO far!

    So, I guess what I am trying to say is sometimes as a parent we have to advocate according to the situation and person we are talking to. There is usually a spin.

    So, to the public it could never be a full. clear picture. We have to play the hand we are dealt and and because Autism is a spectrum and such a mixed bag at that, how can we ever generalize it to the public? There is no black and white.

    I am rambling, so I hope that makes sense.

    Thanks for writing this awesome blog. I look forward to the day my little girl can put into words her thoughts and feelings. Because of people like yourself, I have HOPE! Thank you!


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