Dan Gottlieb described it as "the most excruciating pain" he'd ever felt. He wasn't referring to the physical agony of his broken neck, or to the terrible brace that kept his head nearly locked to his chest for six months, or to the many times his devastating injuries nearly brought him to death's door.
The pain Gottlieb referred to was how his disability totally transformed his life, which meant -- at least for a time -- "being cut off from your species," and feeling that he wasn't "considered a human being."
Invisibility, alienation, loneliness and lack of eye contact, along with lost dreams and a lack of self-worth, are just a few of the experiences the psychologist said he has in common with some 10 percent to 20 percent of the general populace who have disabilities.
The author and the host of WHYY's "Voices in the Family" keynoted a regional conference this month, titled "Opening the Gates of Torah: Including People Who Have Special Needs in the Jewish Community."
The gathering, co-sponsored by a dozen Jewish organizations, including the Jewish Federation of Greater Philadelphia and the Auerbach Central Agency for Jewish Education/Jewish Outreach Partnership, featured 17 different workshops on many facets of inclusion, including early education, asthma and allergies, and residential options for adults with special needs. About 200 people attended the five-hour event, which was also made possible by a grant from the Lasko Foundation.
Getting the Info Out
It's now 20 years since the 1990 signing of the Americans with Disabilities Act. Legal recognition of the right of children with disabilities to a free, appropriate, public education dates back to Public Law 94-142 in 1975 and the Rehabilitation Act of 1973.
The American Jewish landscape has changed during these decades as well. Communities are richer and broader due to ramps and accessible restrooms, Individualized Education Plans (known as IEPs), sign-language interpreters and a plethora of mitzvah days. Accommodation has brought opportunities, joy, pride and inspiration. Still, serious challenges remain, as the conference made clear.
The 17 workshops demonstrated that issues fall into two broad categories: the complexities of serving a diverse and expanding population, and the need to change prevailing attitudes.
"Opening the Gates of Torah" showed that Jewish agencies throughout Greater Philadelphia provide many outstanding programs and services, but it also became clear that this information isn't adequately reaching the people who seek it. Families are overwhelmed by fragmentation of services, coupled with a complexity of regulations and funding.
Moreover, each disability is different. Individuals need case managers, consultants and advocates to navigate the system.
Shantha Edwards, who attended the conference, directs programs for clients in Bucks County who have developmental disabilities. She said that she was unaware of all that's available for her clients -- Jewish families desperate for information and resources.
Constant concerns include transition issues.
"Our daughter will not be able to attend college," said one parent at the gathering. "Is there any sort of residential community for that age where she could continue learning life skills in a college-like setting?"
Despite assets like JCHAI, independent living continues to present huge problems. For example, some 160 adults are on the emergency waiting list for residential placement in Montgomery County's Office of Mental Retardation. Plus, ignorance and fear of the stranger feed isolation and alienation.
In an interview, attendee Adele Fricker talked about how she's built a life for herself after spinal-cord injuries cost her a job and the care of her three daughters two generations ago. Fricker has held excellent jobs since, is pleased to be involved with her synagogue, and proud that her granddaughter made dean's list at Penn State. But she said that someday, she'd love to be invited to someone's home to share a Passover seder.
Marginalizing other people is an obstacle each Jew can remove, said Shelley Christensen, author and coordinator of the Minneapolis Jewish Inclusion Program. She emphasized that "being there, connecting, the act of inclusion -- these are all Jewish values."
Spiritual counselor Mindy Chernoff added that "the greatest gift we can offer others is to be present. Our biggest challenge is to see 'them' as 'us.' "
Gottlieb agreed and urged attendees -- both professionals and people in need -- to have an open heart. The most important question individuals can ask others is: "What is your story?"
Then listen, he stressed, and imagine that this story is your story.