Quarter century passes
When he signed the Americans with Disabilities Act into law 25 years ago this July, President George H.W. Bush aimed to change the lives of millions of Americans living with disabilities. The broad-based law mandated access to governmental services, employment, business and transportation, allowing people to achieve goals and live their lives integrated into a community just like everyone else.
But while the ADA, as the legislation is known, was, in the words of Ruderman Family Foundation president Jay Ruderman, who presides over projects benefiting the disabled in the Jewish and non-Jewish communities, a “landmark statement by the government” in the realm of equality and civil rights, implementation of the law, say critics, has fallen short. Whether in terms of enforcement or the state of economic opportunities for the disabled, many acknowledge that a lot more work is left to be done.
“I think things have improved highly in the last 25 years,” said Deborah Friedman, executive director of Jewish Residential Services in Pittsburgh. “For many people, prior to the passage of the ADA, thinking about inclusion of people with disabilities was sort of off the radar screen.”
Now, after 25 years, the first generation of people who were diagnosed with disabilities as children since the ADA became law “have led a significant part of their lives as part of the mainstream,” Friedman noted.
The ADA “shifted the way people think about disabilities,” Ruderman said. “Before the ADA there was a medical approach: ‘Disabled people have problems. We have to cure them.’ What the ADA said was, ‘No, we need to change the environment, make our public institutions accessible institutions.’ ”
But one of its biggest flaws, Ruderman pointed out, was in exempting religious institutions from certain aspects of accommodation.
“I think our Jewish values teach us that every Jewish soul deserves to be included in our community. Unfortunately, we don’t live up to those values in our Jewish communities,” he said. “We tend to focus on the best and the brightest, and we don’t tend to look after the people on the fringes of our community.
“[People say it’s] expensive to include people with disabilities, but that’s a cop-out,” he continued. “There’s enough money in our community to do what we want. Our community is very focused on social justice, on being a light to the world — that’s a very important value; unfortunately, we don’t look at ourselves.”
So many Jewish philanthropies are focused on the continuation of the Jewish people while ignoring a large segment of the population that wants to be connected, he charged. “When I hear philanthropists don’t do disability, to me, that’s an absurd statement. You want to connect the Jewish community, but you’re willing to write off 20 percent of the community and their families? That tells me we need to change attitudes, and part of that is self-advocates standing up and demanding their rights.”
The Ruderman Family Foundation has provided grants to several Jewish institutions, including the United Synagogue of Conservative Judaism, which recently received $100,000 that it will use “to promote the inclusion of people with disabilities into Jewish life,” according to Ed Frim of Pittsburgh, who is working as the inclusion specialist at the USCJ.
The USCJ grant will be used to “build organizational capacity” among a cohort of about 15 Conservative congregations throughout the country working to improve their capacity to be inclusive, Frim said. Beth El Congregation of the South Hills, which has had an inclusion committee for several years, is one of the congregations chosen to be part of that cohort.
Frim will be working with each individual congregation to create a strategic plan and action plan for people with disabilities, he said. His aim is to have plans in place for each congregation by August so that implementation can take place in the fall.
The focus of each congregation will vary depending upon the demographics of its members, Frim noted. While some will concentrate their efforts on including children with disabilities into their religious schools and youth groups, others may focus on serving older congregants who have recently developed disabilities, such as hearing deficits. Others may be working on renovating their facilities to become ADA compliant.
“The thing about this issue,” Frim said, “is it never goes away.”
But while many Jewish communities across the country struggle with their organizations’ compliance with the ADA, and their commitment to inclusion, Pittsburgh seems to be faring fairly well, according to longtime disability advocate Judy Greenwald Cohen, the mother of an adult child with disabilities.
Although issues of unemployment and lack of funding for families still persist, programs such as the United Way’s 21 and Able initiative aid young adults with disabilities in accessing services that can help them live productive lives once they age out of the services mandated by the state when they are children.
Unemployment among the disabled is prevalent. According to national statistics provided by Jennifer Laszlo Mizrahi, president of RespectAbility, 70 percent of working-age Americans with disabilities are unemployed. In Pennsylvania, where about 78 percent of those aged 21 to 64 without disabilities were employed in 2012, only 33 percent of people with disabilities in the same age bracket were employed, according to disabilitystatistics.org, which is funded in part by the
U.S. Department of Education’s National Institute on Disability and Rehabilitation Research.
In her writings, Mizrahi points out that while other minority groups have made huge gains in employment opportunities, disabled individuals are no more likely to be employed than they were before the ADA was passed.
That’s why she wants to see the Workforce Innovation and Opportunity Act, which was signed into law in July 2014, succeed. Mizrahi, who is dyslexic and suffered a car accident before the passage of the ADA, testified before the U.S. Department of Labor Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities, calling the committee’s attention to the “Disability Employment First Planning Tool” crafted in conjunction with other leading disability advocates.
“We want to see the investment the taxpayer is making [used wisely], giving people with disabilities [a] better future,” said Mizrahi.
But while the ADA opened up many doors for people with disabilities, including some doors to higher education, accommodations are not guaranteed in the same way the Individuals with Disabilities Education Act mandates for the K-12 population, which can leave disabled adults out in the cold.
Shelly Christensen, co-founder of Jewish Disability Awareness Month (JDAM) — now running for the seventh consecutive February — literally wrote the book on inclusion, titled, “Jewish Community Guide to Inclusion of People with Disabilities.” Her advocacy efforts were inspired by her middle son, Jacob, who has Asperger’s syndrome and was not diagnosed until he was 15.
“We always saw Jacob as Jacob and if he had a disability going on then we needed to work with him and not marginalize him and not create a persona that was less than,” she said. “And the one place that we did not have problems was at our synagogue and our religious school. Jacob was just Jacob there.”
As inclusive as her home congregation in Minneapolis was, Christensen and other members of the Jewish Special Education International Consortium recognized that inclusion was not on the radar of many Jewish educators. They looked to JDAM as a way to move from simply educating disabled Jews to including them in the mainstream community with whatever supports helped them be full participants.
“Think of the variety of ways you participate in the Jewish community,” she wrote in a recent blog post leading up to this year’s JDAM. “You choose how you wish to be involved. So it must be for people with disabilities. The key is supporting each person to determine what is important to them instead of us determining what we think is important for them.
“The whole idea of inclusion isn’t complicated: You treat people with dignity and respect that all people are created in God’s image and it’s not a mitzvah project,” she added. “We have a ways to go.”
Joining Christensen in spreading the message that inclusivity must be an ideal constantly pursued is Lisa Friedman, education co-director at Temple Beth-El in Hillsborough, N.J. She blogs about JDAM at jewishspecialneeds.blogspot.com and matankids.org, and offers her expertise to Jewish communal groups, particularly religious schools and synagogues. This year, she is challenging other disability advocates to think about inspiration, awareness, acceptance and inclusion each week of February.
“[The] tagline of JDAM is from awareness to inclusion,” said Lisa Friedman. “Often when I present, there’s this progression: First, you have to make sure people are on board, that they agree [with inclusion], and that’s pretty easy, but a lot of times that’s where it stops. … I went in this direction of, ‘OK, you’re inspired, now learn.’”
Two of the biggest challenges congregations often cite are lack of funds and lack of expertise
“I’ll [be told], ‘Sure, it’s easy for you to say ‘xyz’ because you’re an expert in [inclusion], but we’re not experts,’” said Lisa Friedman. When it comes to “money, people get scared off. … But there are simple ways to be more inclusive, like offering large print books or video streaming.”
Self-advocacy, a buzzword increasingly being used outside the disability world, is a movement that Lisa Friedman fully supports. The involvement of disabled individuals into how they want to be included in the community and what supports they will need should be an obvious place to start, she contends.
As to how well the Jewish world has done with inclusion, Lisa Friedman says it’s a work in progress.
“I think we’ve done well in pockets. I think there are some places … that do some aspect of inclusion well,” she said. “The whole Jewish camping movement isn’t inclusive, but there are exemplary, outstanding examples of inclusion within Jewish camps.”
Ari Ne’eman, winner of the 2014 Morton E. Ruderman Award in Inclusion and president and co-founder of the Autistic Self Advocacy Network, has seen or experienced exclusion. He described having to leave religious school because of his disability.
“To be frank, there are many ways that Jewish communal life is very exclusionary,” he said. “Sometimes that comes in the form of having separate segregated programs instead of being welcomed into the greater community.”
Ne’eman, who holds a degree in political science from the University of Maryland, Baltimore County, co-founded ASAN in 2006 as a response to a “growing discussion on autism, but it was excluding the voice of autistic people.”
ASAN is firmly in the “nothing about us without us” camp and is unafraid of voicing its views — from using identity-first language to opposing autistic individuals being institutionalized or placed in sheltered situations — even when those views garner pushback, even open hostility, from parents and other advocates. Ne’eman wants to see disabled individuals not only brought to the table, but sitting on Federation boards or at the head of Jewish communal institutions.
But shifting the paradigm for those with special needs is a “work in progress,” said Jordan Golin, COO and director of clinical services at Jewish Family & Children’s Service.
“The first step is for the community to recognize that this is a significant issue; and, that is happening,” he said. “The second step is the provision of services, and that is also starting to happen.”
Awareness of those with disabilities is increasing, Deborah Friedman said.
“As a community, we know we have some sort of obligation to help these people,” she said. “And there is an awareness that inclusion benefits those without disabilities as well.”
In Pennsylvania there are a number of organizations that provide assistance to those with disabilities, Golin noted.
“We’re very lucky,” Golin said. “We are better than lots of other states. We are not doing a bad job as a community, but I think we could be doing better.”
From Quest Therapeutic Camp of Pittsburgh for children with emotional or psychological challenges, to the JRS which helps provide housing and support services for adults living with mental illness or with intellectual disabilities, to the Friendship Circle, to various programs supported by the Jewish Federation of Greater Pittsburgh, “we do have a lot of really high quality services in our area,” Golin said.
Nevertheless, a lot of adults with disabilities are “sitting about home, not working,” noted Linda Marino, critical/special needs coordinator at JF&CS.
“After age 18 or 21, some services go away,” Golin said. “And as an individual with special needs gets older, and his parents get older, they worry more. They worry what will happen to the child once the parent is gone. It becomes more complicated.”
There is a waiting list — sometimes for decades — for housing and other services for adults with disabilities, said Deborah Friedman.
Things seem to be improving, though, and the transition from high school to adulthood for those with special needs is getting easier, according to Marino.
“People are getting on board at age 14,” she said. “Agencies are invited to meetings and helping to make plans about what this person is going to do after high school. There is more conversation about that.”
“I think we can be pretty proud of what Pittsburgh has done to be more inclusive,” said Cohen, noting that communal agencies such as the Agency for Jewish Learning, the Jewish Community Center of Greater Pittsburgh, the Jewish Association on Aging and the Jewish Family & Children’s Service, among others “have all put programs in place to be more inclusive. And we can applaud many of our synagogues with inclusion committees as well.”
Toby Tabachnick can be reached at email@example.com. Melissa Apter writes for the Baltimore Jewish Times.