Michelle and her husband Aron are parents to two young adults, their daughter Rachel and son Danny. Known as "DJ Danny," Michelle's son has cerebral palsy and speech apraxia, but he is a "sociable, fun-loving guy." He loves all kinds of music but particularly the Macarena. Danny has had a few gigs at special needs parties, and this summer while away at Camp Ramah, he worked as a DJ at the pool!
Michelle is also a parent disability advocate, a non-profit innovator and a social services entrepreneur. She blogs on topics related to intellectual and developmental disabilities for the LA Jewish Journal. Her driving passion right now is her job as the Founding Executive Director of the Jewish Los Angeles Special Trust, the first pooled nonprofit trust in Los Angeles County. The trust is open to all faiths and is an affordable and easy way for people with disabilities to have access to private funds without jeopardizing their government benefits.
Michelle broke our hearts in the good way telling us about Danny's bar mitzvah some years ago. Conservative Judaism is very important to the family, and after their daughter Rachel had a beautiful bat mitzvah, Aron and Michelle wanted the same for Danny. Their synagogue was supportive but ignorant of the disability population, so with Michelle's help and inspiration from an inclusive evangelical church in Pasadena, they pulled it off. Elizabeth had the pleasure of attending that service and recalls it as a formative experience for her of beauty and inclusion and community.
Michelle acknowledges that these things are difficult for organized groups to do, but she says "instead of saying NO, people need to just say YES, AND." Now that Danny is a full member of his synagogue, he is, quite literally, counted, and is an integral part of the community with an obligation to show up for the important rituals. Michelle added that because of his severe disabilities there are few other places where Danny is counted.
That sense of community or the lack of it is what fuels much of the anguish and the isolation that many parents of severely disabled children and young adults feel. Michelle points out that in the Hebrew community, the special needs kids often become the recipients of good deeds but that they, too, should have the obligation of performing good deeds, that they are able to participate in the full community.
At the end of the rich and varied discussion, Michelle managed to finally talk a bit about her own needs and desire for better self-care. She spoke of the struggle to balance family and career and of how as she's grown older and Danny more independent, she's able to take more time for herself.
"I guess looking back, I should have maybe checked out of working for a few years," she says. Listeners will probably agree that they're glad she stayed in the game such was her impact on their lives and their children's!
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Inspirational Person or Group
A group of parents in California in the 1960s who refused to put their kids in institutions and pushed for community-based programs. Their advocacy led to the Lanterman Act. It's on their shoulders that we stand as we keep advocating for community inclusion. There's a documentary about them called "We're Here to Speak for Justice."