Adults with Disabilities Take Action to Help Others
In a recent panel discussion entitled, “Opening the Gates of Community, Identifying Needs, Advocating for Access, and Becoming Inclusive,” moderated by Jeri Mendelsohn and Elise Hahn Felix, Co-Chairs of the UJA-Federation of New York’s Taskforce on People with Disabilities, panelists, with great insight and compassion, shared their views regarding challenges to inclusion, and the missions of the organizations they run to optimize life experiences for individuals with disabilities.
Panelist Sharon Shapiro, CEO of Yad HaChazakah-The Jewish Disability Empowerment Center, who herself is physically disabled and has a speech disability, related how she founded the organization twenty years ago to facilitate independent living for individuals with disabilities. Relating her perspectives as an individual with disabilities, she indicated that it’s the speech impediment, not being in a wheelchair, that has proven the most difficult barrier to surmount. But Shapiro, like the name of the organization she founded, is tough and bright. She copes with people reacting with distress to her speech by “catching their attention, and looking them straight in the eye.”
Michael John Carly, Executive Director of Global and Regional Asperger Syndrome Partnership (GRASP)—an organization which focuses on educational outreach, advocacy, and negotiating between employers, religious leaders, and sometimes even significant others, for individuals diagnosed along the Autism Spectrum—shared his personal experience with Asperger’s Syndrome, having been diagnosed with it a week after his four year old son received the same diagnosis. For Carly, this diagnosis was freeing, suddenly opening up for him an understanding about his own life. It no longer was about confusion or blame, but an understanding of his differences due to a “difference in wiring.” Carly noted how instrumental and enlightening it is for individuals along the autism spectrum to meet and share their experiences. GRASP currently has growing regional support group members in New York and Long Island which are peer-run. As Carly expressed, “individuals with autism go through life trying to explain themselves to the world, but it’s much easier when you know there are people who run on the same juice as you.”
In sharing their advice on inclusion from a moral and policy-oriented perspective, Shapiro stated the importance of “opening up the child in each of us. Ask questions that children ask: ‘Why? How? When? When seeing someone who’s different, approach and get to know them.” From the point of view of policy, Shapiro indicated that organizational leadership should focus on expanding recruitment and outreach efforts for individuals with disabilities.
Carly would like to see individuals “getting involved,” especially with reference to the heavily debated academic and policy discussions surrounding autism, such as the cure debate, the vaccine debate, and how to allocate funding. “The more involved, the more educated we get, the sooner we’ll reach a resolution,” he stated. Resounding Shapiro’s thoughts on empowerment, Carly highlighted the importance of self-advocacy, with employers, and in life in general.#