soapboxes big ..


Last Wednesday afternoon, I was honored to speak on behalf of Autism Speaks to a group of loaned executives from various federal agencies. The executives were attending a training session at MIT, preparing to work on a camapign for Community Health Charities of New England. CHC provides vital funding to thirty-three local and national organizations who, in turn provide services and resources for people with various diseases, disabilities and conditions.

My role was to thank them for their support of autism related services and to try to tell them just how much their funding means to some of the most vulnerable members of our community.

I spoke to them about the necessity of funding research. Above all else, I highlighted the desperate need to support the scientists and doctors who stand at the frontiers of discovery and innovation.

I spoke to them about the need for a capable and credible presence on Capitol Hill and in every state legislature around the nation. I heralded the recent passing of Autism Reform Bills in Wisconsin and New Jersey as palpable evidence of success, but reminded them that we are only 15 states into a long fight. I talked about how close we are in Massachusetts, but that we would not -could not – let up the political pressure until similar (and better) bills are signed here and then thirty-four more times thereafter.

And of course I went into great detail about some of the wonderful local programs that CHC’s money helps to sustain.

But in the midst of all of that, I decided to also talk about awareness. I can feel you rolling your eyes. Stay with me. I know that many of us in the autism community are well past believing that there could be anyone left out there who is not AWARE of autism. Personally, I’m friggin SICK of autism. By virtue of the numbers alone, it seems improbable that it’s escaped anyone’s radar. One in one hundred fifty seems pretty well impossible to avoid. Our lives are so saturated with this concept, it’s truly amazing to think that anyone else could have missed it.

And yet I believe that deep down, there’s still a whole lot left to de-mistify about autism. There is a veil of secrecy that still hangs over so many of our kids. Many of them are children like mine who may be able to ‘pass’ for a short period of time – whose slew of varied challenges might all be able to be explained away by some other means. She has a language ‘delay’; a coordination disorder, sensory difficulties; pervasive anxiety, motor planning challenges; a developmental ‘delay’ – whichever one fits best at the moment an explanation is required. Anything but using the dreaded ‘A’ word.

There is still fear and misunderstanding about what autism is – what it really means to have a brain that works differently from the majority of the population.

And this ‘passing’ – God, it must take so much effort, no? At what cost do we teach our kids to get by in this world as something they are not? And at some point, is there not shame and fear implied by a hidden diagnosis? Why else is it hidden if not for these? If it is for fear of the label – its ability to artificially limit or the reaction it may elicit – then the label itself needs to be better understood.

And what of those who could never dream of ‘passing’ as it were? Who have no choice but to announce their autism just as they display their gender. Whose behavior is dictated by an internal system that continually betrays them. Who appear to be ‘melting down’ or ‘lashing out’ because they have no other way to process the world around them. What about those who have no language with which to explain their actions? No system at all for interacting with others? Whose behavior appears to be aggressive until it is understood as defensive.

Without our efforts to make some sense of this for the rest of the world, where are we leaving these children, young people and adults?

So as much as I’d like to check the box marked ‘awareness’ and move on, I don’t think our work is done. The more people know, the more they understand. The more they understand, the more compassionate they become. The more they care, the more they will help us make life better for our kids.

And so, I asked these folks to take the time to think about perception and why it matters so much. Why it can be the difference between maintenance and productivity; desctruction and tolerance; fear and compassion.

Here is what I said.

I’d like to ask you to think for a moment about perception. I’ll use myself as an example and ask you to take a minute to think about how it is that you perceive me, standing here in front of you. Please be nice – tall and thin might be words you could consider. (ed note ~ This was the one time that I got a laugh from the crowd and truth be told, it was far heartier than I would have liked.)

You probably don’t have too much of an opinion yet. Perhaps you like my blouse (and if you don’t, don’t tell me) or well, perhaps you think that I look like I might have something worthwhile to say.

Well, what if I presented myself differently? What if I couldn’t help but flap my fingers in front of my eyes because I couldn’t handle the sensory input in the room? What if I yelped sharply any time someone coughed or cleared their throat because I perceived it as an attack on my already overly taxed system. What if I bit my arms or hit myself in the face because my body couldn’t make sense of the messages that the environment was sending to my brain? What if I were spinning in circles here in front of you?

What if I had limited words? What if I repeated the same phrase over and over and over again? What if I had no words at all?

How would you perceive me?

And what if we were all third graders? What if I were a fellow student in your classroom? What if I sometimes lashed out or bolted from the room? What if I cried and got frustrated and didn’t have the words to tell you why?

What if I were YOUR child?

How would you perceive me?

I am incredibly blessed that my little girl has been as lightly touched by autism as she has. I often say that we swim at the shallow end of the autism pool. In the shallow end of this pool, perception is vital. At the deep end, it can be everything.

I later came back to it and said,

A few short years ago, life would have been very different for my daughter. She would no doubt have been written off as mentally retarded and behaviorally challenged. She likely would have been in a substantially separate environment where she would ultimately have had life skills training and probably not much more.

Instead, my daughter has a team of dedicated and highly trained professionals who work together to give her the tools to mitigate her challenges and who support her as she develops and leverages her strengths. She attends her local public school and spends the majority of her time in a typical classroom. She has a community of people who are AWARE of her neurological differences and who accept and embrace her to her very core.

When I finished speaking, I was certain that I had failed to connect with a single soul in that room. I admitted later that I’d been tempted to toss a rock out into the crowd to see if anyone would at least flinch. (A small rock – more of a pebble.) My attempts at jokes seemed to fall flat (with the exception of the one) and I was convinced that I’d left them entirely unmoved.

As the representative from CHC took over and began to speak again, I tried to sneak out quietly. I felt badly that I’d blown it, but I didn’t see any way that I could change that by sticking around through the other presentations.

Just as I reached the door, one of the event coordinators stood up. She spoke right over the gentleman from CHC as she said, “Wait, please! Can we just acknowledge Jess for that amazing presentation? That was just .. incredible.” She began to clap.

I stood awkwardly halfway out the door as the entire room rose and applauded. My face was beet red and I had nowhere to hide. The woman who had been the first to stand asked over the din of applause if I would be willing to speak at their campaign’s kick-off event.

I was dumbfounded. The gentleman from CHC later came out to the hallway to let me know that there were two more requests to speak.

I share this with you for a reason. A big one. Ready?

I didn’t think anyone was hearing me. I didn’t think I was getting through to a soul in that room. I didn’t think my words were making a difference.

I was wrong. People were listening. They ARE listening.

I spoke publicly for the first time just over a year ago. That night I said, “I can’t speak for you. Your child’s experience is different than my child’s. Your experience is different than mine. So you need to tell them.”

We all do this in our own way. We find our voices when we are ready. As Vicki Forman just taught me in her glorious book, This Lovely Life, we become the mothers (or fathers or sisters or brothers or friends or .. ) that our children need us to be. They have given us that incredible gift – this transformation of sorts.

So please, when you are ready – use your voice. But don’t be surprised when you find out that people are listening.

22 thoughts on “soapboxes big ..

  1. You are such an inspiration. I don’t know how you could ever think your words, whether written or spoken, don’t have an impact. They do, and it’s amazing and powerful every single time. Brooke is so lucky to have you, and the rest of us, we’re just lucky to have found you and to know that you’re on our side.

  2. All this and pretty, too.

    How does she do it?

    I marvel often, my friend, how you do DO all the things that you do, then I remember Brooke, and the look of utter delight on your face when you’re around her, and then I say oh yes, that’s it.

    You do what you have to do. As Vicki says, we become the people they need.

    And you do it smashingly.

    So proud of you, sister.

  3. You couldn’t leave a room “entirely unmoved” if you tried. You reach peoples’ souls.

    Thank you for your work for our little ones.

  4. It sounds like you did really well. I think one thing this post shows is that you should leave more time for audience response at the end, whether that’s applause or questions or whatever. Often people are just quiet because they are taking it in and waiting for the end, but then you vanished.

    Just remember that they are favorably disposed toward you to begin with or they would not have been there. And you didn’t say any of them walked out, so if that’s true you can figure they pretty much stayed that way, right? As events showed, that was true.

    Looks good . . .


  5. I’m one of your quiet readers. I’m still finding my voice, so for now I rely on yours … more than you could imagine. I would love to share more with you and tell you just how much you mean to me. Could I contact you by email? Thank you.

  6. Even though we’ve never met, I’m quite sure people who know you would say that you light up whatever room you’re in…you know, with being so tall and thin. Then on top of that, when you speak…My God, Jess, when you speak…You must just blaze like the sun. Once again, thank you for your passion and inspiration.

  7. I’m pretty new to your blog, and don’t have a child with autism. (another disorder with some similar challenges.)

    This is an amazing post, an amazing speech! Thank you for reminding us all that we have a voice, and that people are listening. I too was in tears.

  8. “So please, when you are ready – use your voice”

    well, i’m glad that you are one of the ready ones. in that year since your first speech, you’ve see so much change in brooke and really expanded out your understanding of what change means, how to seek it while at the same time protecting her needs and sese of self. your intelligence, compassion- your perspective is exactly what people are needing to hear.

    also, public speaking seems terrifying, so it’s impressive that you’re going for it, learning the ropes. you’re one of the funniest people i know, so if the crowd wasn’t laughing out loud, it mut have been happening on the inside. they were just doing some contemplative, inward laughing.

    “But don’t be surprised when you find out that people are listening.”

    er. i’m trying. you’re my role model, inspiration.

  9. thank you all so very much for your incredibly kind and generous comments. i would never be able to stand up and speak without every one of you with me every time i do.

    the inspiration goes full circle!

  10. Jess, they wouldnt have been there if they werent ready to listen. I think you just captivated them, lifted a veil to reveal a clear perspective (thinking “Claritin clear” reference here). You didnt throw out professional jargon, but instead shared the reflections and insights only a Mom could convey.

    I may never do public speaking on a large scale, but I have found people are genuinely interested about my son. If I can touch a few people out and about my community, the ripple will spread. Plus what Mom doesnt enjoy hearing, “he’s so cute!”.

    Keep throwing those stones into the pond Jess, your ripples will reach far 🙂

    Keep up the great work Jess!

  11. You were able to make autism real for them–into something they could understand and even relate to. That’s what’s so often missing when all you know is a smattering of jargon; that’s what people can grasp from simply seeing an autistic child reacting to a strange environment.

    Thank you for your efforts.

  12. So I have “This Lovely Life” sitting on my kitchen counter but I’ve been to chicken to read it. I love her writing. Just have to make sure I can handle the content. Thanks for the nudge.

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