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What the TV Show 'Speechless' Will Show the World About Cerebral Palsy

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My son Thomas was born 19 years ago this September 26. Last month, my daughter Taite, who’s 14, found a passage I had written about Tom’s birth a few years back:

“Tom emerged from the firestorm of desperation which blazed along his brain’s neurons as they felt the chill of dying, and did so with determination to believe in one lucky tumble of the genetic dice. Tom is a cute kid. Everyone falls for him.”

Taite read it aloud, smiled with an odd mischief, and said to me, “Dad, that is sooo dramatic!”

Isn’t that how so many of us treat cerebral palsy and disabilities? With seriousness, caution, and care, giving monumental importance to every moment and nuance that surrounds a life so often fragile. And of course that feeling is one part of our lives.

We all know that.

But “what we all know” is exactly what a brilliant creative mind doesn’t want to talk about. Writers and such want to bring you what you don’t know. Or what you never realized everyone else felt too. Or the things we don’t talk about. The creative mind wants to give us things in a way that we might finally be able to share them.

That is the beauty of the new sitcom “Speechless.” The show not only wants to talk about those things, it insists on doing so with humor.

Ever since my organization, the Cerebral Palsy Foundation, became involved with “Speechless” and this milestone moment, we have been aware of how the world of disabilities has needed something like this, even longed for it: a chance for a few moments in the spotlight. A light that is bright enough to allow others to see us: to understand.

This Wednesday, at 8:30 p.m. on ABC, the light goes on. At that moment, what will we find?

We will find ourselves. And even more, we will find a new way of thinking about ourselves.

I don’t know about you, but so much of my early years as a father of a child with cerebral palsy were driven by two things: disorientation and anger. Not because my son had CP, but rather because the world didn’t know how to help me and my family cope with it. Heck, they didn’t even understand it.

I’ll never forget the moment when my son was 2 years old and my best friend sat with me in a car and broke down crying. He said, “I always thought you just asked Tom questions and pretended he answered so you could feel like the rest of us. But I saw it today. He’s answering you with his eyes. I saw that he’s always communicating with his eyes.”

Yes. Our life was that different.

I remember the first time our daughter, four years younger than Tom, walked into our room in the middle of the night. We were shocked! Because of course we had a child, and it had not happened with him. Who is prepared for such a different experience?

But, just as much, I remember anger. Anger that every single year, I needed to explain to a school system that my child wasn’t getting the supports or understanding he needed. Every single year, teachers who had never taught a non-verbal child with disabilities were surprised they didn’t really have it down. Teachers who thought that caring was the same as teaching.

I remember getting angry at the entire world of augmentative communication devices, because the devices weren’t stylish enough, or thoughtful enough, to fully express the beauty of my child’s spirit.

I remember being angry at good friends, because their houses had stairs into their homes that made it hard for us to visit.

Angry at people in restaurants because they didn’t have a sixth sense to let them know when they needed to push their chair out of our way.

Angry at supposedly accessible museums where the last room on the tour had four “innocuous” stairs leading to it -– which meant that we, and only we, had to go back to the very beginning of our visit and start backwards.

I never realized I had been that angry at so much!

And then one day, when Tom was around 12, I just got so tired of being angry. It wasn’t getting us anywhere. It made people defensive. I was cutting off so many paths forward. Of course, anger has its place. But for the most part, people aren’t mean or thoughtless because they’re just plain mean and thoughtless. They’re that way because they truthfully don’t know what to do. They’re confused. And they are scared to death of doing the wrong thing.

When I finally understood that, our world changed. We found kindness, a polite recommendation, and a laugh. It didn’t change everything, and it sure didn’t change it overnight. But it began a conversation — one so desperately needed.

And that’s why so many of us are finding “Speechless” to be our show. Not only because it is showing us our life, with an incredible attention to detail and authenticity. Not only because it shares a family that is us: with challenges, issues, idiosyncratic relationships, squabbles, routines, confusions, and love. But because it is asking us to laugh, and feel something new: a way forward.

When I was talking with Scott Silveri, the show’s creator, first telling him of our Foundation’s plan to offer weekly content so we can continue the conversation the show is starting, he told me how meaningful that was to him. When he was growing up with his brother who had CP, his family felt so alone. They didn’t know where to turn.

As CEO of the Cerebral Palsy Foundation, this partnership is thrilling, and will be so helpful to so many. But, Scott, it isn’t what will make someone not feel alone. “Speechless” will do that. “Speechless” will give us a safe and giddy space within which people can ask the questions and have the conversations we all need to finally have.

When my son Tom was in first grade, he and I gave a talk about his CP, and about brain damage. At the end we asked for questions –- and I was prepared for all of them: to talk about his cerebral cortex and basal ganglia, to discuss therapies and speech output devices and all that. But the first question was, “How does he swim?”

I took Tom out of his chair and I held him and I said, “We do it like this. Together.”

Tom smiled and the class giggled. And, there above my shoulders, held aloft, Tom reached for the sky. With support. With understanding. And with the love that only a father or family member will ever really understand. Because, of course, we see our children in their own light. Physical differences give way to spirit, to shared dreams, to laughter.

With “Speechless,” the world may finally be able to see our kids as well. They’ll see something quite remarkable: that people with disabilities are just like everyone else, with the same sense of fun, the same ambitions, the same desires, joys, and longings. This show might finally help the world get us right. And it will happen because behind every show are the people who create it. The group is amazing. An actor, Micah Fowler, who has truly lived the life the show puts out there. A cast who have worked to find our rhythms and who have done their homework and worked so hard to find what drives us all forward. Writers who have family members with disabilities, and other writers who share their insights. And TV executives who have embraced all that is special about this show and who have put not only their resources, but also their passion into getting behind it. Raising a kid with disabilities has its own special requirements, and the same goes for this show.

I’m thrilled to share the wonderful embrace that the entire group, including ABC and Fox TV Studios, have given to CPF. Together we have built a great vision that can benefit our community. So while “Speechless” entertains, CPF can inform.

Each week, right after the show airs, the Cerebral Palsy Foundation will be posting fresh videos and content on our website to address a key theme of that week’s show. The first week we will deal with the question of “What is CP?” and post short, easy-to-digest answers from the world’s leading experts: including a past president of The American Academy of Cerebral Palsy and Developmental Medicine, the incoming president, and one of our field’s great thinkers who has been awarded that group’s Lifetime Achievement Award. In the coming weeks we will be covering Alternative Communication, Inclusion, Physical Therapy, and many more. We will also be hosting weekly online events right after the show, like Facebook Live on our Facebook page this Wednesday at 9 p.m. Eastern time.

That means that each week, when “Speechless” begins a new conversation, we can help you continue it.

This Wednesday when “Speechless” airs, every family is getting a great gift: a wonderful, wildly funny sitcom that truly captures family life. But the disability community will also get something more: acknowledgement that we too can lay claim to this life. For us, this is a monumental moment.

One afternoon on the set Scott told me, “This show is a love song to my brother.” I look forward to the day when Scott, walking along a street, gets to experience what often happens to those who create a classic song. He will hear all of us singing it.

Learn more at Cerebral Palsy Foundation.

Originally published: September 20, 2016
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