“Pulling Back the Curtain: The Good, The Ugly, The Real of a Journey with Disabilities” is the title of a provocative presentation by Whitney Ellenby, who will speak on Feb. 5 at the Alliance’s Dwares Jewish Community Center.
Ellenby dives fearlessly into sensitive topics that so many people experience but are afraid to speak aloud, providing insight into what may seem like a private disgrace and cause self-blame for having a “defective” child. Rather than another “miraculous breakthrough” story, she provides an unflinching, real-time portal into the mind of a parent who used extraordinary and unorthodox methods to advocate for her child.
Ellenby is a former U.S. Department of Justice Disability Rights attorney, founder of Autism Ambassadors, and a disability advocate. She is the author of “Autism Uncensored: Pulling Back the Curtain,” which will be available for purchase at the program.
This is a true story that focuses in an immersive way on autism as Ellenby experienced it, from diagnosis to impact on her marriage, defeats, etc. Her methods of coping with the common feelings of shame for having a child who is conspicuously different from the norm applies to all those impacted by disabilities. She explores such topics as public disclosure, the burden the general public shares in meaningful inclusion of people with disabilities, and so on.
While a strong proponent of inclusion, Ellenby also advocates for giving a person with disabilities “a room of one’s own,” where they can be entirely themselves without fear of judgment or reprisal. She also strongly feels that we must make sure parents are imbued with a sense of confidence about their children, so they never succumb to apologizing tacitly or overtly for who they are, and instead proudly disclose their identities.
Ellenby says, “Keep in mind that although my book focuses on autism, my discussion following the reading will relate to parents of all special-needs children, since so many of the struggles we face are intertwined, and my message about eschewing shame, disclosing the truth, etc. ... applies to all of us.”
This presentation is part of Jewish Disability Awareness, Acceptance and Inclusion Month. Last year’s JDAIM program in Rhode Island, the film “My Hero Brother,” about the interactions of Israelis with Down Syndrome and their siblings during a bonding experience in India, is now available for rental on Vimeo on Demand.
“Pulling Back the Curtain: The Good, The Ugly, The Real of a Journey with Disabilities” will be presented on Tuesday, Feb. 5, at 7 p.m. at the Alliance’s Dwares Jewish Community Center, 401 Elmgrove Ave., Providence, and is open to all. Parents of children with disabilities will particularly benefit from the presentation, as will educators, therapists, medical professionals and policymakers.
For more information, contact Larry Katz at firstname.lastname@example.org or 401-421-4111, ext. 179.
LARRY KATZ is director of Jewish life and learning at the Jewish Alliance of Greater Rhode Island.