February has been a busy month for Dr. John Winer, executive director of the Jewish Association for Developmental Disabilities. To mark Jewish Disabilities Awareness and Inclusion Month, J-ADD’s head participated in three major events.
On February 10, Dr. Winer took part in Jewish Disability Advocacy Day on Capitol Hill, which was co-sponsored by the Jewish Federations of North America and the Religious Action Center of Reform Judaism.
On February 18, he was invited by the White House to sit on a panel with other experts. The panel’s focus was the inclusion of Americans with disabilities in the Jewish community. Because both events took place in the nation’s capital, “I should have moved to D.C.,” he joked.
Sandwiched in between these two events was his own organization’s second annual Jewish Disability and Inclusion Conference, held on February 14. “It was a great sandwich to participate in,” he said.
Dr. Winer, who has headed J-ADD for the last 12 years, said it was a “humbling experience” to be invited to join the White House panel. Convened by the White House Office of Public Engagement, the gathering was moderated by Matt Nosanchuk, a White House associate director of public engagement and liaison to the Jewish community, and Maria Town, similarly a White House public engagement associate director and liaison to the disability community. At the meeting, Jewish advocates for the disabled briefed Obama administration officials on barriers to Jewish life for people with disabilities.
Along with Dr. Winer, panelists included Sheila Katz of Hillel International, Aaron Kaufman of JFNA, and Ruti Regan, co-founder of the nonprofit special needs group Anachnu. The organizers, Dr. Winer said, “were looking to see who could provide expertise and information from both a service perspective and a knowledge perspective” — in other words, who had both hands-on experience and “professional knowledge of what’s out there.” Two of the panelists, Ms. Regan and Mr. Kaufman, are disabled.
J-ADD serves more than 200 families in the community who need respite services, as well as 50 intellectually disabled people who need “all levels of residential support, from 2 hours to 24 hours a day,” Dr. Winer said. The organization’s primary goal is to provide residential support to these people in the community; the number of housing options has increased he said.
“We still have traditional group homes,” Dr. Winer said; J-ADD owns two group homes outright, and it shares ownership of five others with the state. But not all people opt to live in these facilities. As a result, the organization now offers apartment living with full support for those who prefer it. All the apartments are rented.
Dr. Winer said he not only contributed to the D.C. panel but also took away new ideas.
“The perspective I brought is that you should look at disabilities as a whole,” he said, noting that J-ADD works with people who have intellectual disabilities, and this population must be seen as a part of the wider disability community.
He also spoke about the values that make up the “Torahsphere: tzedakah and gemilut hasadim. If we don’t marry them properly, we won’t do things right,” he said. Gemilut hasadim, he continued, “is about being beneficent to someone,” while “tzedakah means looking for justice, for [people’s] rights.” People with intellectual disabilities have the right to housing, to an occupation, and “to feeling like productive members of society. We need to do the right thing by being beneficent. No individual wants to feel like they are a chesed project.”
Looking at the issue from a broader perspective, Dr. Winer said that the problem also could be described in terms of distribution of resources. “Let’s say someone is hard of hearing and needs to pay extra for an interpreter at synagogue,” he said. “It might cost that person $1,000.” But looked at from a community-wide perspective, “if the $1,000 is spread out over a membership of, say, 200 members, it’s not insurmountable. It’s a shared communal expense.”
Applying that principle to group homes and vocational programs, Dr. Winer said “we can do it as a group expense, including it in the cost of living. We’re looking for perfection, but we’re not perfect. We should gather up the pieces” — people in the community with and without disabilities — “and make a beautiful mosaic. No Jew should be excluded because of a disability.”
It was also noted at the gathering that “religious institutions have a way of not participating in the ADA” — the Americans with Disabilities Act. For example, Dr. Winer said, while such institutions can’t discriminate in employment, they may not have ramps. Dr. Winer suggested that we write to politicians pointing out that while exemptions were originally made for religious organizations “to make accommodations for people who couldn’t afford it,” it’s now time to change that.
“Every planning project should have these requirements,” he said. “We need to promote an approach. We don’t need to solve problems on a need-by-need basis. We need a flexible approach to inclusion, but not a ‘special exceptional’ approach.”
He learned something very important in Washington, Dr. Winer said. “I learned that people with disabilities want us to listen to them. They don’t want professionals telling them what to do.
“They’re willing to listen to us, but they want us to listen to them, to hear what they have to say. One panelist [with disabilities] spoke about a Birthright trip he went on, geared to people with disabilities. He said he really enjoyed himself.”
From that, Dr. Winer learned that while professionals must not lose sight of the balance between integration and segregation, sometimes it’s okay to step back. He said that as a proponent of inclusion, his “aha moment” came when he heard how much his fellow panelist had enjoyed that Israel trip.
The panel discussion, he said, showed the need for more information-sharing among professionals in the field. “Some of us already got together to continue the conversation,” he said. “We hope there will be more advocacy in the community, more awareness and acceptance that people with disabilities have a mind, have a voice, and need to be heard.
We’re chasing away people,” he added, explaining that he recently heard from people in the deaf community that they were “rejected” by a synagogue that refused to hire a signer.
“I hope there will be more conferences,” Dr. Winer said. But even more important, “I hope we can really make a change.”