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Tuesday, September 2, 2014

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Jews with intellectual disabilities speak out

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U.S.-based lawyer Richard Bernstein, legally blind since birth, speaks out for people with intellectual disabilities. [Galya Ouanounou photo]

TORONTO — A new Jewish self-advocacy group for people with intellectual disabilities held its first meeting on Feb. 16 at Beth David B’nai Israel Beth Am Synagogue.

Following the model of other self-advocacy groups, including non-Jewish groups in Canada, the new group will include a non-disabled “enabler” to help those with intellectual disabilities speak out for themselves. 

Members of the group were addressed by U.S. disability-rights lawyer and professor Richard Bernstein, who has been legally blind since birth and has campaigned for years towards awareness and acceptance for the rights of all individuals.

The enabler is “helpful if they need help accessing resources, or anything too complicated,” says Galya Ouanounou, on leave from JVS Toronto, who has 25 years of experience in special needs, both with JVS and with Yachad, part of the U.S.-based Orthodox Union.

One participant, Rachel Cohen, 31, has Asperger’s syndrome, which makes socializing and employment difficult – and going to shul impossible.

“It’s too stressful for me to go on my own,” Cohen says. “If I had somebody in the community that I could go with, I’d be going to shul more often.”

The term intellectual disability includes autism-spectrum disorders such as Asperger’s, along with Down syndrome, and others. 

It replaces older terms like “mental retardation” and “mental handicap,” and helps differentiate these conditions from mental illnesses like schizophrenia or depression, said Ouanounou.

Intellectual disability has little to do with IQ – a person with an intellectual disability may have a high, low or average IQ, and a person with a low IQ may not have an intellectual disability, she said.

The goal isn’t to stir up trouble, or to sit around and kvetch, Ouanounou emphasizes. “Self advocacy isn’t going to tackle every issue that exists.”

The flyer for the Feb. 16 event invited participants to “explore your goals.”

Ouanounou says it was an open invitation to “talk about what your life is like,” rather than to air a laundry list of complaints.

For one thing, Cohen points out, everybody’s needs will be different.  “Someone with Down syndrome might have different needs from someone with autism or cerebral palsy. You can’t just say … ‘someone with a disability’ and treat everyone the same.”

Ouanounou agrees. Whether it’s the chance to take a trip, find employment or volunteer in a field of interest, or develop relationships with the opposite sex, she hopes the group will offer a “window to realize what else is out there.”

Expanding horizons can be tremendously exciting, she said. “People may be living in a group home… they’ve been in a supported workshop, doing the same kind of thing for 20 years or more,” says Ouanounou. “They’re not using their potential. They might not even know what they want to do with their life.”

Following Bernstein’s talk, he took questions about disability rights from participants, including one young lawyer with cerebral palsy who asked if he should mention his disability when applying for a job. Bernstein suggested he use his disability as a bonus, proclaiming “look what I’ve overcome, I’ve been to law school, I can overcome obstacles.”

Ouanounou said, “people don’t always think about using disability as a plus.”

She plans to continue with regular meetings, a Facebook page, finding funding sources and building connections within the community.  The group has already been endorsed by four local organizations:  JVS Toronto, DANI, Yachad and Zareinu.

Cohen sees the group as an opportunity “to make suggestions for programs you might want to see. Or, if there’s something that is not fair, to speak up against it, and get things that you dreamed of coming true to come true.”

To the entire community, Ouanounou suggests embracing individuals with disabilities in any way we can. “Don’t worry if you feel uncomfortable. Treat them as you would with anyone else, and you’ll get to see the person for who they are. They are just so happy to be welcomed with a smile. That’s what the Jewish community is about – reaching out to one another.”

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