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Another Voice: Advocates for the disabled are making real progress

By Max Donatelli

This past October, my son, Craig, wife, Joyce, and I were privileged to attend the Self-Advocacy Association of New York State’s (SANYS) 26th annual conference in Albany. This successful three-day conference saw more than 800 self-advocates (mostly individuals with developmental disabilities), agency support staff, parents and government people joining together with the theme: “Transformation Is Us: Our Lives, Our Choices, Our Community.”

We had the honor of being asked to be keynote speakers the first night of the event. We told the story about Craig. As a young man with Down syndrome, he moved out of our family home almost two and one-half years ago and into a shared living situation with friends his age through the efforts of the young men, their families and Aspire of Western New York. The three of us told of his dream about wanting to move out with his honorary brother, David, and the families’ five-year journey to help realize this vision.

Our presentation was well-received and got many supportive comments. It was great to be part of this wonderful event and allow Craig to continue his advocacy at the state level.

It is difficult to describe my feelings about being a part of this experience. To me it was emotionally overwhelming to see so many individuals learning, sharing, having fun and gaining from this successful conference. The range of developmental disabilities was very wide. There were individuals who have autism, cerebral palsy, blindness and many other disabilities, some noticeable, others not so. There were many in wheelchairs, some needed help to be fed, and some with visible physical deformities. However, nothing kept them from clearly enjoying the experience.

Kudos to Steve Holmes, the executive administrator of SANYS, and the conference committee for putting on such a meaningful event. This organization has really helped the self-advocacy movement grow over the past 20 years. Being there struck me with how much progress we have made with individuals with developmental disabilities finally being more present in the mainstream.

Even 10 years ago you wouldn’t see many of these people in public, let alone sharing their stories. They would have been hidden away from sight. Given the critical challenges we face today getting funding for needed resources, it was refreshing to see so many wanting to advocate for their own needs. This of course included Craig, who spoke well at the microphone sharing his own story about his dream.

It is so important for all advocates and their families to educate public officials and the public at large about the serious challenges that individuals with developmental disabilities face today. This conference helped inspire me to do even more to strive to make a difference.

Max Donatelli, of Hamburg, is a family advocate and consultant for Baker Victory Services.