We share with you here a personal tribute from NYCA board members, Robert and Michelle Smigel, who have known and worked with Suzanne and Bob Wright for many years. NYCA joins the Smigels in remembering.
Suzanne Wright, NYCA board member and co-founder of Autism Speaks, passed away last Friday, July 29, at age 69. Thanks to Suzanne and Bob Wright’s efforts, autism went from being barely recognized to a well known condition. Legislation, world awareness and information now exist and form the foundation of the work that NYCA and others will forge ahead with in the future.
In the public service arena where passions run high and disagreement can be a part of a movement’s process, Suzanne fought valiantly for what she believed in. She was a compassionate figure who achieved groundbreaking work for autism. Please join us in mourning her loss and celebrating the enduring legacy that she has left behind.
Tribute to Suzanne Wright
by Robert Smigel
Suzanne and Bob Wright were always different. When NBC was bought by a light bulb company in the 80s, there was plenty to make fun of, and I reflexively assumed the new CEO would be a corporate automaton. But Bob would visit us at SNL and talk with us like a real person. Genuine listening, answers and laughter – I wasn’t used to this from a guy in his position. At the SNL 25th anniversary party, with 1000 more famous people in the room than this writer, he came up to me and thanked me for the job I’d done over the years.
I can’t remember exactly when I met Suzanne, but I do remember the impact. She was way beyond down-to-earth. I started talking to this stranger and it felt like we were continuing a long conversation from where we’d left off 10 minutes ago. If Bob made NBC feel like a community, Suzanne made it feel like an old Italian restaurant.
A few years later, my wife, Michelle, and I started the first “Night of Too Many Stars” benefit for autism charities. I wrote to Bob and Suzanne hoping they would consider co-chairing the event. Of course, they agreed, but they also did much more than just show up. They wanted to know all about our son, Daniel, and learn more about autism and what Daniel’s needs were. Suzanne even asked to visit a school we were trying to help get started. All of this compassion and investment, years before their own grandson, Christian, was diagnosed with autism.
In those early years of struggling to help Daniel, the hardest part was the feeling of being alone, with very few people who understood how we felt. At the very least, every parent needs to have hope, and support, and empathy. The Wrights gave us all those things, like very few people did, before Autism Speaks was even an idea.
Last night I looked at the letter we wrote to them about the event. We had joined a group called the Autism Coalition “because of its commitment to help unite the efforts of various autism-related advocacy groups which, unfortunately, often place themselves in competition. We intend to offer many of these groups the opportunity to raise funds and sell tables to this event.” After Christian’s diagnosis, the Wrights basically dropped everything and devoted themselves to this cause. They also saw the divisions within the autism community and basically applied their corporate experience to what amounted to a friendly takeover of the Autism Coalition. Other major organizations joined them as well and Autism Speaks has made an incredible difference.
Still, disagreements within our community are common, but I never understood some of the criticism toward AS. As I’ve written in the past, people are entitled to have different opinions – it’s a very complicated issue, partly because the label “autism” covers such a wide spectrum. There are people with autism who are happy to be the way they are and that deserves respect. There are parents of kids with autism who struggle to communicate, or have severe issues – like self-injurious behavior – who are entitled to wish for anything that could help their children.
Some pointed ads and statements drew concern. Although many organizations had also talked about a “cure,” AS, by bringing autism to the forefront, became a target for people who felt the group was not simply encouraging acceptance, of embracing your children for who they are.
But, again – complicated. Autism is often regressive: a child, such as Christian, the Wright’s grandson, can be talking at age 2, and slowly lose all communication skills in a few months. When our son Daniel was diagnosed after months of regressing, a developmental pediatrician asked us to watch all our home videos from before he had changed. I watched Daniel looking into my eyes and smiling, talking, laughing, using a fork perfectly, throwing a ball – everything he suddenly could no longer do. I can barely continue typing right now.
My point is, when it happens like that, to someone you cherish most in the world…acceptance isn’t the first thing on your mind.
It takes a while. Michelle and I did try to light a candle – whether or not it was a coping mechanism – and embrace the positive. And, ultimately, the Wrights have done that tenfold. AS has not just funded research, they’ve been funding services in increasing numbers. The Wrights have been invaluable advocates in Washington, using every connection they’d made over the years to lobby for more government funding and, most notably, for insurance reform. For years insurance didn’t cover any behavioral therapy for autism, and now thousand of families, who’d struggled to pay for it, finally have access to this crucial service thanks to hardworking advocates in Washington.
When Daniel was young, lots of people didn’t understand what autism was, and when he’d tantrum in public, some of them would give us a hard time. But at least he was a cute little kid. One of my biggest fears was how he would be treated when he was older, and bigger, and not as adorable. Would he be a pariah that people wanted to avoid? Or, worse, were afraid of? Daniel is 18 now, a grown up, who still needs someone with him all the time in public, and still tantrums on occasion. When it happens, it’s not remotely cute. But, as for my old fears, the opposite has taken place. People understand. They don’t complain, they generally don’t stare. Sometimes they smile supportively. And Michelle and I know that Autism Speaks is primarily responsible. From our own experience, it’s clear that all of Bob and Suzanne’s work promoting awareness has only made the world far more accepting of and compassionate toward people with autism. All these years later, they’ve again made us feel less alone.
It’s easy to be cynical, it’s actually my job – I just came back from mocking our political process nonstop with my hand up a puppet’s ass. But there was a moment at the DNC, during President Obama’s speech, that shut me up for a while. He talked about how some mistakes are inevitable “when we try…when you’re the kind of citizen Teddy Roosevelt once described – not the timid souls who criticize from the sidelines, but someone ‘who is actually in the arena…who strives valiantly; who errs…but who at the best knows in the end the triumph of high achievement.’”
It was a useful reminder that there are a lot of good people in that arena. And the one in Cleveland, too. It’s convenient to ignore that fact, but whether you agree with all of their goals or not, they’re genuinely there to make a difference, and many of them pull it off.
Suzanne jumped into the arena with everything she had. She looked you in the eyes and made you believe anything was possible. And she convinced and inspired thousands of us. I’ll miss you, Suzanne, but I know you’re not going anywhere.