From Awareness to Inclusion

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Disability advocates are pushing for all Jews to be included in all aspects of Jewish life. (Courtesy of RespectAbility)

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. According to Virginia Knowlton Marcus, executive director of the Maryland Disability Law Center, 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.

“[The ADA has] been the beginning of a sea change in how people with disabilities are regarded in our society,” said Marcus. “There’s a long history of discrimination and segregation that the ADA provided a legal tool to overcome, and we have made significant progress in the last 25 years.

“Before the ADA, there were hundreds of thousands of people with disabilities shut away in large facilities rather than being included with their families and their communities,” she added. “[The ADA] has begun a shift of resources out of the outmoded way of dealing with people with disabilities.”

Ruderman agreed that the ADA was “significant.”

[pullquote]“Jewish values teach us that every Jewish soul deserves to be included in our community. unfortunately, we don’t live up to those values.”[/pullquote]

“It shifted the way people think about disabilities,” he 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, he 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.”

Ben Dubin, a member of Baltimore Hebrew Congregation who has testified in Annapolis on disabilities and serves as vice chair of the Baltimore County Commission on Disabilities, agrees with Ruderman.

Dubin, whose adult daughter is deaf, sees lack of compliance with the law as a significant barrier to the disabled.

“I guess its unfortunate today that people have to sue [to meet ADA standards],” said Dubin. “I’m really cognizant of venues, facilities when there is not a signer or oral interpreter for the deaf, or captioned for the deaf. When I take my daughter to these places, why do I constantly have to ask in advance [if these services are offered]?”

Answering his own question, Dubin offered that “some of it is still attitudinal. People don’t think people with disabilities can do what people [without] disabilities can do with regard to the job market, but if you hold businesses and government [agencies] to the letter of the ADA, what’s in the law, things would be ideal.”

According to national statistics provided by Jennifer Laszlo Mizrahi, president of RespectAbility, 70 percent of working-age Americans with disabilities are unemployed. In Maryland, where slightly more than 80 percent of those aged 21 to 64 are employed, only slightly more than 42 percent of people with disabilities in the same age bracket are 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’s 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.

Locally, there are a number of organizations that provide vocational training and educational opportunities for the disabled. Among them are the Arc, Chimes and the League for People with Disabilities, Inc., which was co-founded by the Council of Jewish women. The Community College of Baltimore County works in collaboration with these agencies to host classes and provides students with learning differences or cognitive challenges an accessible education through the Single Step Program.

Melanie Hood-Wilson, director of special populations at CCBC, estimates that 90 to 125 students enroll in the noncredit program each semester on campus. There are two types of students at Single Step, she said: the student who wants to go out in the world and have a career and the student who simply wants to have the same college experience as his or her nondisabled peers or siblings who might attend nearby Towson University or UMBC.

Teaching life skills is also part of the experience, as there has been “a growing awareness that self-advocacy and self-determination are essential,” said Hood-Wilson.

While the ADA opened up 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.

“All people want to be as independent as we can be; some of us just need more support,” explained Hood-Wilson. “That’s really what the disability world is all about in the 21st century — helping people with disabilities figure out how to live the lives they want to live and providing them with the resources they need.”

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.

Jacob Christensen was diagnosed with Asperger’s syndrome when he was 15. His mother co-founded Jewish Disability Awareness Month. (Provided)
Jacob Christensen was diagnosed with Asperger’s syndrome when he was 15. His mother co-founded Jewish Disability Awareness Month. (Provided)

“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 educators. They looked to JDAM to move from simply educating disabled Jews to including them in the mainstream community as full participants with whatever supports they needed.

“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 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 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.

Rabbi Lynne Landsberg, a senior advisor on disability rights for the Religious Action Center of Reform Judaism, experienced exclusion firsthand.

While taking her son to religious school years ago, she was in a car accident that left her in a coma for six weeks; she suffered a traumatic brain injury and needed to relearn how to walk and talk.

She said via email, “To my dismay, many synagogues I visit tell me that their attempts to welcome people with disabilities fall under the purview of their social action committee. We Jews must help our synagogues understand that welcoming people with disabilities is not a social action item. … Social action is teaching every segment of our community about this minority that is seldom acknowledged.”

Self-advocacy, an increasingly popular buzzword, is a movement that 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, 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.”

Exclusionary practices at Jewish camps is something that rings true to Ari Ne’eman, winner of the 2014 Morton E. Ruderman Award in Inclusion and president and co-founder of the Autistic Self Advocacy Network (ASAN).

“The Ramah camps has a policy that each Ramah camp will welcome a camper with a particular disability,” said Ne’eman. In other words, he continued, if you are disabled, you might not be able to go to the same summer camp as all of your friends from home. “Now, if the Jewish camp system were subject to the same requirements under the ADA as secular camps that would be a very questionable arrangement.”

Camp is not the only place Ne’eman has seen or experienced exclusion firsthand. 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 UMBC, 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.

In terms of local Jewish life, The Associated: Jewish Community Federation of Baltimore has a Caring Commission that works to ensure services for the most vulnerable populations, according to commission member and Jewish Federations of North America’s Disability Committee co-chair Janet Livingston. “I do think we’ve done quite a lot in our community,” she said. “We’ve worked hard to make people with disabilities able to participate and function and give all our families services to be able to participate.”

Another Associated-funded Jewish communal resource Livingston points to is the Baltimore Jewish Abilities Alliance. Its website, jewishabilities.org, serves as a one-stop shop for Jewish and general services for a wide array of disabilities from early childhood through adulthood.

To mark JDAM, The Associated is partnering with the JCC, Jewish Community Services, the Macks Center for Jewish Education and SHEMESH on a number of workshops and programs. The Associated will be sending representatives to Washington D.C. on Feb. 25 to participate in Jewish Disability Day, organized by the Jewish Disability Network, JFNA and the RAC.

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