This blog post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.
My heart is heavy today. A few hours ago, I learned that one of my favorite disability advocates passed away on Tuesday. His name was Matthew P. Sapolin and he was the commissioner of the Mayor’s Office for People With Disabilities in New York City. He lost his fight against cancer, a disease he had been battling most of his life. He was only 41. But cancer wasn’t his disability. He was also blind. According to his friends and colleagues, his blindness informed his life, it did not narrow it. As a dad of a young man with autism, I like that description. The New York Times published a wonderful article about Matthew’s life, his accomplishments and the mark he left on the disability community. I would like to dedicate this tribute to the mark he left on me.
I first met Matthew at a disabilities housing conference in 2010 at the Federal Reserve in Washington, DC. We sat next to each other and although we didn’t talk much, I was impressed with his ability to navigate all aspects of his life. I did get to know his service dog quite well. He was kind and gentle just like his owner.
In April of that year, Commissioner Sapolin hosted a special ceremony at City Hall to commemorate Autism Awareness Month. He personally attended the event, which honored several advocates from the autism community, and spent considerable time talking with the attendees. He also delivered a speech that made it clear he understood the many challenges people with autism face. His compassion for others was palpable.
Two months later, I joined Autism Speaks co-founder Suzanne Wright for a meeting at City Hall where we talked with the Commissioner about our awareness initiatives and family services programs designed to help people with autism in New York City and beyond. He listened, gave us advice, showed that he cared and importantly offered to help. Exactly the kind of meeting one would like to have with every administrative official!
My fondest memory of Matthew, however, was spending time with him on the South Lawn of the White House in July, 2010. We were there to commemorate the 20thanniversary of the American Disabilities Act (ADA). It was a beautiful day, not a cloud in the sky. Temperatures hovered close to 100 degrees, most of us were sweating profusely. We talked about how fitting it was for the occasion. When it came time for President Obama to walk a line to shake hands with the attendees, it was obvious that only a few would be able to personally greet the President. Suddenly, we were in a “disability mosh pit” vying for our moment of fame.
Matthew’s beautiful wife Candra was at his side but they got separated as the President made his way to our section of the line. I was in the front row and about 30 seconds from my chance to meet the President of the United States. But suddenly I decided that it was more important for Matthew to meet the President than me. That day was about him more than it was about me (or my son with a disability who couldn’t be there). So I turned around, gently grabbed Matthew by the shoulders and guided him to the front of the line where he got his 15 seconds to personally talk with President Obama. I wish I knew what they said to each other.
As soon as they were finished, Matthew swung around and had the most incredible look of joy on his face. I can still see that expression now, it will never leave my memory. He didn’t know where I was standing; he shouted my name and when I told him where I was, he gave me a big ol’ hug. Candra handed me a camera (or maybe it was a phone) and asked me to take a picture of them. Shortly thereafter, I managed to get my Blackberry to snap a picture of the President (see attached) as he made his way down the line. It was a surreal moment for all of us and one that will probably last with me forever. And Matthew Sapolin was a part of it.
I haven’t seen or talked with Commissioner Sapolin since. I didn’t know that his cancer had returned. I knew Autism Speaks was working with his office on some autism awareness initiatives but his death came as a complete surprise to all of us. His passing is a huge loss to our community. Not just to Autism Speaks, or the autism and disability community but our community at large. He represented all of us. He showed us how to live courageously as well as compassionately. He stood for those who can’t always stand for themselves. I learned valuable lessons from him and hope to carry these forward as an advocate for the disabled. Thank you for modeling these qualities for us. Rest in peace, Matthew.
Long before it had a name, long before there was any type of research, long before there was acceptance by society, long before there were resources for families and the children, my youngest brother had a form of autism. This was back in the early 60’s. No one had a name for it so he was labeled emotionally immature. Now it is called Asperger Syndrome. He read books (Homer), newspapers, magazines and retained what he read at the age of two. He was doing simple arithmetic by three and none of this was taught to him. But ask him a question or his opinion on something and he could not communicate what he wanted to say. That lasted all through his lifetime. He could not fit in socially. He had a brilliant mind but could not share that with people. It wasn’t that he was emotionally immature; he just didn’t know any better. He was family-oriented. He cared about people in general.
A couple of weeks ago we were looking at old family movies and there was one of him as a baby about a year old. I did notice something different but due to the lack of research back then no one picked up on it. When he would go into his trance his eyes would get this look and he would get a slight grin on his face and no one could reach him abruptly. You had to do it gently and calmly, otherwise he would jump and get excited. In the movie he was sitting on somebody’s lap and he started that stare. Little did we know at that time what was going on.
My brother eventually attended a special education school and a sheltered workshop where he thrived. It was a great place for him. He went to companies all over the city of Pittsburgh and even traveled when other people would not walk three feet out their door. Unfortunately, for my family and the world, my brother passed away three years ago from cancer.
He taught us in those 15 months how to go through a painful and grueling treatment plan with a positive attitude. He taught us how to die. He never gave the nurses, doctors, and aides one second of problems. He handled every treatment, test and surgery like “this is what we have to do to get it, so lets get it done.” I would explain what each procedure was and he would be fine with it.
If only all patients could be like the man who was diagnosed with a mental disorder not yet named when he was born, lived long enough for it to be identified and then proved to the world, that when it truly counts, people with forms of autism can and are the strongest people we have. My brother Jim was 43 when he died.
This “In Their Own Words” essay is by Peg Bittner, of South Park, Penn.
If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.