Richard Ellenson

@cerebral-palsy-foundation | contributor
People with cerebral palsy rarely get the interventions and supports they need at the moments they need them. As such, their lives are often deeply and unnecessarily affected. The Cerebral Palsy Foundation defines and addresses Moments of Impact – the times at which interventions and insights, if properly implemented, have the power to change lives. We then work to better understand how to effect change and implement it. We seek out the best thinkers to form collaborative networks which work together to bring about transformation. Finally, we share our work with others so it will have the greatest possible impact. Our Collaborative Networks bring together many of the country’s most prestigious medical institutions, as well as innovative thinkers in diverse areas such as technology and media, in order to accelerate not only the development of critical advances, but also their delivery. While our work of course includes important strides being made toward the eventual prevention of cerebral palsy and developmental disabilities, our focus is on the translational research, clinical application and knowledge transfer that can dramatically change lives today. --Richard Ellenson, CEO, Cerebral Palsy Foundation

Xbox Adaptive Controller Opens Gaming to People With Disabilities

What a difference a decade makes. On Christmas morning 2010, I couldn’t wait to give my son a brand new product: the Xbox Kinect. Other fathers may have also felt that way, but probably not this strongly, because my son has severe cerebral palsy with lots of spasticity and fluctuating tone. He uses a power wheelchair to get around and an iPad to speak. So I couldn’t wait because he couldn’t wait. He had read all about this new marvel that was going to allow him to play Xbox games without a controller – which he couldn’t access. He was actually going to play Xbox games just by waving his arms! It was going to be a biiiiiiig moment. Well, it was going to be a big moment; until it wasn’t. The Kinect couldn’t even detect Tom’s body in his wheelchair. It couldn’t see his movements, so he couldn’t even get started. That Christmas morning we were Scrooged. If you’re a parent of a child with disabilities – heck, if you’re a parent period – you know how it feels to see your child deeply disappointed. Or if you don’t… let me tell you. It feels like falling into an endless tar pit: dark, immobilizing, slowly sinking, and having no idea how to get out. Which takes me to this morning, 2,810 days after that last one: a morning when Microsoft started shipping the Xbox Adaptive Controller. The best words I can use to convey my feelings are, “ Wow! It feels like Christmas!” The Xbox Adaptive Controller (XAC) is a super cool piece of hardware created by Microsoft (not a small company, but Microsoft!) that’s specifically designed to allow people with a wide range of physical disabilities to access game commands and play video games alone and with friends – in short, to have fun! Microsoft is acknowledging and responding to the fact that people with disabilities really want to play Xbox games – and they are now going to make sure it can happen. It’s all the more special because the Cerebral Palsy Foundation has had a role in this process. From our first conversations with Microsoft nearly five years ago, we’ve been able to share our experience and provide insights throughout the entire development process. The relationship has been wildly rewarding, to know we have had input into the form factor and user experience of XAC. In fact, this month CPF is also launching user profiles to help those with disabilities choose the most effective switches and setups to meet their specific physical challenges. It’s part of the magic of getting to work with the fabulous folks behind this wonderful addition to our world. The Xbox Adaptive Controller has so much packed into it. It offers two super large buttons for key actions and commands, a low profile that doesn’t get in the way of engagement, and jacks in the back which allow one to put in all sorts of accessible inputs: switches, buttons, toggles, joysticks and so on. All those things sound familiar if you have disabilities – but if you don’t, you’re probably saying, “Huh?” That’s the point, of course. The physical access XAC provides isn’t something everyone needs. But anyone who does need it can now have it. What a change! The gamer’s passion which so many have embraced has until now eluded many people with physical disabilities. But it’s finally here for all of us — not just the gaming, but all the social energy, social capital and friendships that go with it. The introduction of the Xbox Adaptive Controller is monumental. It shows that the deeper but less obvious needs of people with disabilities are being understood. It shows that a company with a mandate to deliver products for us all is delivering products that truly are for us all. That is the true joy of seeing the Xbox Adaptive Controller released today. And if you don’t think it’s really joyous, take a look at the attached video of my son playing with his friends. Now the Xbox Adaptive Controller is here, maybe we can fully acknowledge that the biggest issue faced by people with disabilities hasn’t been a lack of desire, or ability, or motivation – it’s been a lack of access. We can now see that the biggest obstacle to participation can be overcome if one commits to discussion, drive and smart design. Thanks Microsoft. Thanks, Satya and Jenny, and thanks Bryce, Elizabeth and Jessica and so many others. From all of us at the Cerebral Palsy Foundation, thanks for making us a small part of this remarkable moment. And now I gotta go. My son wants to play Xbox with me.

Speechless Is Changing Attitudes About Disability

Richard Ellenson is CEO of the Cerebral Palsy Foundation. Tonight, the second season of “Speechless” comes to an end. “Speechless” is a show that has sent thunderclaps of recognition and empowerment throughout the entire disability community. It leaves us in its season finale with the DiMeo family sharing a warm, if slightly odd moment together: looking up at the stars and out toward the future with a sense so many of us share: desperate belief coupled with torrential uncertainty. The heart of that final scene is important. And just as certainly, “Speechless” is important. We all know the statistics that one in five people is disabled. By some definitions, I could be seen as disabled: I wear glasses. And if Hollywood were to come back at us with that perspective, they could claim that nearly all shows on TV have someone who is disabled. But that’s not really right, is it? The most critical issues in disability often aren’t the challenges faced by the body. They’re the far more staggering challenges faced by the spirit and the soul: challenges that arise when one is constantly misunderstood, underestimated, underappreciated, and far too often rendered virtually faceless. “Speechless” has changed that. “Speechless” — a show that includes a child with cerebral palsy who cannot speak verbally — has given our world a voice. The cast of “Speechless” has given us a new way to see ourselves: with humor, and with the courage to look a bit deeper at what makes us tick. It shows us the complex condition that is not just cerebral palsy, but a family with cerebral palsy. Take Micah Fowler, whose nuanced and insightful acting has allowed so many to acknowledge the frustration and disappointments that can be part of life with CP, but also forced us to look past disability to see the vibrant engagement and desire that is too often missed. Or John Ross Bowie, who has created a textured and nuanced sense of a father torn between an infinity of love toward his son and his inability to fully deal with that emotion. Or Cedric Yarbrough, who has brought a veritable Greek chorus to the role of Kenneth. Or the bold work by Minnie, Mason, and Kyla to inhabit characters who are trying to balance a family while also trying to define their own true center. Who among us doesn’t need to see the brave exposed complexity of this family’s life to help us figure out our own? And isn’t that the purpose of art? The everyday world has not had a difficult time finding sadness and perceiving tragedy in the world of cerebral palsy and similar disabilities. And heaven knows, it is there when one looks. In fact, many of us have had moments this year which are all but unbearable: moments which test faith and belief. However, the world has rarely been able to see the more important aspects of disabilities: humor, kindness, and most of all, living a full life. Speechless has done so much right to help change this. Scott Silveri, whose humanity finds a way into every decision he makes, has not only created a vehicle to honor his brother, but to honor every one of us. Surely it must have been a journey for him to find the universal within his own personal experience and reach out to so many others to help guide his way. This season of “Speechless” ends with a profound sense many of us who are touched by disabilities have experienced: that we grow as time goes on. The DiMeos have grown. The show has grown. The writers have grown. The production teams have grown. We have all grown: even us as an audience. New characters have joined the show as guest stars or recurring roles, and each time they bring the authenticity of having the actual disability of their character. More and more, “Speechless” has taken on truly difficult topics: the challenges of dating, going to college, finding one’s passion in life, wrestling with ambition, and even tackling the complexity of simple friendships in our world. In doing so, “Speechless” has found something unique: it has begun to challenge the conventions of the sitcom. Sitcoms have a formula: problem, laugh, solution. But those of us who live a life affected by disability know it’s not that simple. The arc of our life is different: it is problem, laugh if you can, and sometimes accept irresolution. In tonight’s episode, as the DiMeos look up into the sky, that word defines the moment: irresolution. The show fully embraces it, just as we must. How big an impact has “Speechless” had? It can’t be overstated. Nor can the anticipation for its future: for how much more it is sure to grow and move us all forward. “Speechless” has had a great impact on the people who have been involved in it. Today, Micah Fowler has an enormous role in the world of disabilities. The grace JJ shows riding fictional ups and downs is matched by Micah’s personal grace in riding what surely is a soaring sequence of continual ups. His role not only as Cerebral Palsy Foundation’s ambassador, but as a meaningful presence at so many events, has affected so many. Zach Anner, a man with CP and one of our great creative minds, a man whose presence on YouTube gets him stopped often by people in the street, has become a writer on the show, moved to Los Angeles and found a comfortable place in that larger creative community. Jessy Yates, who appeared in this year’s episode “S-H-Shipping,” was just accepted into The Yale School of Drama – the first actress in a wheelchair to have that honor. And my son Thomas, who had a small role in last year’s episode “The C-L-CLUB,” was just accepted into SUNY/Purchase, in their Theater department: a first for a nonverbal individual. Each of these moments blazes trails for us all. Each one shows what is possible. Each one defies a convention and breaks a barrier, just as surely as “Speechless” broke barriers. Yes, “Speechless” is a family sitcom. Yes, “Speechless” is a funny show. Yes, “Speechless” part of an ABC Wednesday night filled with uniquely engaging families. But if you are one of the tens of millions of people in the US who have gone for decades – no, make that forever – without having someone tell you it’s OK to fumble a bit through life and laugh at it, “Speechless” is also something else. “Speechless” is important. “Speechless” matters. P.S.: If you feel like we do, post your thoughts on CPF’s Facebook page. We’ll make sure they get to the cast and crew. Have a great Wednesday evening. If you happen to be watching TV at 8:30, we’re sure you will.

CP Channel Mobile App Offers Resources for People With Cerebral Palsy

Every hour on this planet, another child is born with cerebral palsy. Every hour, another individual enters our world with challenges and potential, awaiting a torrent of future successes, sadnesses, obstacles, and joys that will unspool over the years. I tell my son Thomas, a glorious 20-year-old full of ambition, cleverness, and snark, a boy who has good looks, sandy hair, and blue eyes, and who rolls in a power wheelchair and speaks through an app on his iPad, that despite some challenges, his life will be much like any other. When I say that, he looks at me with a wicked sly half-grin. When I tell him “It’s OK. You keep trying. It’s OK to fail… especially because you succeed so often,” he says to me, “Dad, disability is hard.” And when I answer, “Fair enough… I get it,” he tells me “Sort of.” My son is optimistic and full of belief in himself. But not always so optimistic that the world will understand that belief. It is World CP Day. But why in the world is it still so complicated? As a parent, I ask myself that question every day. What can I do to be there for my child? To help him achieve all that he wants… to become – gulp! – independent. As the head of the Cerebral Palsy Foundation, I ask myself the same question, albeit a bit differently: What are the things standing in the way? How can we push the world a bit so that we lower some barriers? How can we make professionals more informed, and the world more understanding, so people can get past obstacles when they only lower so far? Here are three things which might make that happen. All of which, not coincidentally, happened to be included in the Cerebral Palsy Foundation’s (CPF) new app. The CP Channel. First, there is not enough information in our world. Parents who are already challenged by physical and caretaking demands that come along with a new child – let alone one with a disability — rarely have the time to look through this fragmented world of disabilities to find all the information they require. And so the first of the CP Channel’s three video feeds is titled Insights from Experts. It features over 50 videos from the world’s most well-known experts. The videos range from understanding the brain to considerations about surgery to therapeutic approaches to adolescent behavior. To date, these videos have been seen by nearly one million people. Imagine: parents and people with CP can not only tap into the vast and thoughtful knowledge of our field’s best minds – they can also share it with their pediatricians, general practitioners and teachers. Our world just shifted. Secondly: what good is being informed without being inspired? Let’s face it: the biggest issue in the world of disabilities is not that people don’t get the therapies they need: it’s that too many other people don’t get people with disabilities! This may not be a popular thing to acknowledge, but people are uncomfortable when they are unfamiliar. People with CP and other disabilities have been held back by this unfortunate reality for too long. Despite some advances we are seeing – despite the breakthrough ABC sitcom “Speechless,” created by Scott Silveri with a wild comic irreverence that allows us a new door in to understanding this world’s complexity, despite the theatrical strides being taken by the astoundingly thoughtful Broadway director Sam Gold, whose recent production of “The Glass Menagerie” broke new ground not only in understanding disability, but in understanding the heart of the conflict within the play – we need more exposure. And so CPF Channel’s second set of videos share Videos We Love: a rotating collection of videos meant to share stories and perspectives from some of the CP world’s most well-known individuals. You’ll find Zach Anner and the Rainbow Bagel, a seven-minute film highlighting the challenges of getting around NYC in a wheelchair. There are videos from CPF ambassadors, including Maysoon Zayid’s fabulous TED talk, Micah Fowler’s thoughts about “Speechless,” many of our Just Say Hi spots and the evolution of that campaign: a lovely video with the amazing jazz musician Wynton Marsalis and – well – Tom Ellenson. Together, these videos have been seen over 60 million times. They make many powerful statements. But as a collection, the statement is even bigger: life is challenging, yes, but life is fun, life is interesting, life is meaningful, and life with disabilities is a life to which we can all relate. It’s that simple. Except it’s not. In the everyday world, one person may be shy and so be a bit slow talking to others. In the world of disabilities, that slowness may come from the need for a speech device, and compounded by difficulty with motor movement. In the everyday world, one might feel awkward in a restaurant because they don’t like crowds. But in the world of disabilities, it’s often difficult to get to your table without people moving to let you through. There is a very realistic need for supports. And there is a great and urgent need for the world to better understand this. That’s why the –> is focused on the here and now. In medicine and science, we so often look for cures – but so much can be done today if we focus on getting information out there. The third thing to consider when trying to change the world is to have a mission with a real chance of accomplishing it. CPF’s mission is to develop and collaborate on initiatives which change lives for people with CP and related disabilities – today. We focus on solvable issues, and do so within existing institutions and organizations. We collaborate with a diverse range of medical institutions such as Harvard’s Children’s Hospital, Johns Hopkins/Kennedy Krieger, Columbia, and UCLA – as well as many partners who help create new ideas and innovations – such as Apple, Microsoft, and the NYC Department of Education. CPF is also the Official Partner and Technical Consultant of the hit ABC sitcom, “Speechless.” These initiatives are important. They move things forward. So our final video feed features Our Work. These videos showcase groundbreaking initiatives, like Early Detection and Intervention (EDI), which is taking place within existing NICUs to dramatically lower the age at which developmental disability can be detected and addressed. Our Just Say Hi in the Schools program is creating breakthrough opportunities for inclusions in every school district in New York City, and now being launched in other schools nationwide. Our Women’s Health Initiative is addressing the substandard healthcare received by too many women with disabilities. And we have gorgeous initiatives like Design 4 Disability, where students create accessible clothing under the mentorship of fashion icons like Thom Browne or Derek Lam. These initiatives are important not simply because they are creating change – they are creating templates for change. New ways of thinking that we can share, support, and implement. And materials that can be distributed to help make it happen. The CP Channel was designed to start conversations — and provide dozens of ways to continue them. It was designed to inform and inspire. To educate and empower. It was created so remarkable individuals within the world of disabilities can share their stories, and so professionals who have devoted their lives to the medicine and science around disabilities can share their knowledge. It was designed to grow. And finally, it was designed to demystify. To be shared. To help make everything just a bit less complex. We hope you like it. Happy World CP Day. And we’d love to hear your feedback. PS: My son Tom is an actor. He says he loves to be on stage because it is the one place people stare at him for the right reasons. He has written a one-man show, “It Is What It Is,” which he will be performing on Off-Off-Broadway in New York City for five nights this October, because he says if he doesn’t create his own play, people might not think to cast him in theirs. To get tickets, go –>. Learn more at Cerebral Palsy Foundation.

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

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.