Home > Awareness, Government Relations > Tribute to Matthew P. Sapolin (1970 – 2011)

Tribute to Matthew P. Sapolin (1970 – 2011)

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.

Matthew P. Sapolin

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.

(l-r) Matthew Sapolin, New York City Mayor Michael Bloomberg, Autism Speaks President Mark Roithmayr

  1. Jennie
    December 2, 2011 at 3:11 pm

    He sounds like a very remarkable person. I am sad I never knew of him. Prayers for him and his family.

  2. December 2, 2011 at 3:22 pm

    RIP Mr. Sapolin.
    You will truly be missed.
    Thank you for everything you did during your lifetime.

  3. Katie Wright
    December 2, 2011 at 8:03 pm

    So well said Peter.
    Matthew was such a fighter for our kids.
    When the local National Autism Association wanted to hold an autism awareness day in City Hall Matthew Sapolin responded immediately and offered to hosted our event.
    He was as kind and gracious a member of NYC govt. they could ever hope to have. Unlike most politicians Matthew did not just say a few words, take a picture and leave. He gave a moving and personal speech about living w/ disabilities = living w/ dignity and finding a place where all over children can be valued and appreciated for their talents. He spoke about the need for NYC govt to do a better job helping our families.
    Matthew stayed until the very end, chatting and asking questions of all the Moms and their kids.
    He did not have a child nor a family member w/ autism but Matthew was as interested, caring and as eager to help as anyone I have ever met.
    Whenever we needed Matthew’s help w/ City Hall he was always there. At various times Matthew met w/ me, my Mom, Sabeeha and members of AS and NAA. He could not have been more helpful and encouraging towards our cause.
    Matthew Sapolin will be so missed.

  4. December 2, 2011 at 8:17 pm

    Commissioner Sapolin was an amazing and tireless advocate and his loss will be felt deeply and widely. My prayers are with his family at this difficult time. He was instrumental in sponsoring the National Autism Association New York Metro Chapter autism awareness event in the NYC Council Chamber and was an active participant in the event – and stayed long after it ended to speak with families and advocates. Both his speech at the podium and his one on one conversations with those there were powerful and inspirational. May he rest in peace.

  5. December 2, 2011 at 8:24 pm

    Very sorry to hear this news. He presented me with the NAA Spirit of Hope award last year and inspired me. My condolences to his family, friends and colleagues.

  6. December 2, 2011 at 8:44 pm

    Thank you Mr. Sapolin.

  7. Darla Highley
    December 3, 2011 at 9:00 am

    Thank you for posting Peter.

  8. December 3, 2011 at 9:21 am

    I am deeply saddened by Mr. Sapolin’s passing. I had the privilege of meeting him when he honored us by hosting National Autism Association New York Metro chapter’s commemoration of Autism Awareness Month at City Hall. His support of our organization’s efforts to raise awareness about autism has had a lasting impact. We will always be grateful to his memory for what he did to elevate the discourse on autism. I personally feel his loss and it is with a heavy heart that I offer my condolences to his family. His legacy will endure.
    Sabeeha Rehman

  9. December 5, 2011 at 9:05 am

    Very well-said Peter. My condolences to his family, friends, and colleagues. He was an amazing human being and an incredible advocate. I had the pleasure of meeting with him in connection with the National Autism Assoc. – NY Metro Chapter Autism Awareness event in 2011. He was instrumental in arranging for us to use the City Council Chamber and was an important part of the event itself. His remarks from the podium as well as his words spoken privately to the many families and professionals who stayed after the ceremony to meet him were powerful and touching. He will be greatly missed and his loss weighs heavily upon me, as I am sure it does for anyone who had the honor to know him, however briefly. His life was cut too short but he made an incredible difference in the time he was here. May he rest in peace. My thoughts and prayers are with his loved ones. Kim Mack Rosenberg

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