Tag Archives: family

Facing Disability Stereotypes With Dignity

Courtesy of Sandee Brawarski, NY Jewish Week

Courtesy of Sandee Brawarski, NY Jewish Week

By: Rabbi Michael Levy

Time: about 1500 BCE
Location: Goshen, Egypt

The Torah portion Vayechi (and Jacob lived,) which will be read in synagogues on January 3, 2015, describes an encounter between Jacob and his son Joseph (Genesis 48, 8-14.). The patriarch Jacob, elderly and nearly blind, is about to bless his grandchildren Menashe and Ephraim. He places his right hand on the head of Ephraim, the second-born, and his left hand on the head of Menashe, the first-born.

Observing this, Jacob’s son Joseph, the father of the two boys, feels compelled to correct his father, both verbally and by moving Jacob’s hands. He reminds his father that he should place his right (primary) hand on Menashe, the first-born son.

This might be the first recorded incident in which a non-disabled individual assumes that age and/or physical disability automatically result in diminished intellect or misguided judgment.

Jacob’s Response
Jacob calmly reminds Joseph that not only does he know exactly what he is doing, but also that he prophetically foresees that Ephraim will be greater than his older brother. His perceived mistake is definitely not a mistake.

With calmness and dignity, Jacob maintains his position as the family patriarch whose closeness to God sometimes enables him to foretell future events.

Time: 2015
Location: Jewish Communities

Frequently, many of us with physical disabilities encounter people who, like Joseph, assume that we can’t judge situations well. Once, as I tried to walk down subway stairs, a well-meaning commuter grabbed me from behind, assuming that I wanted to take the escalator. I wish I had maintained Jacob’s calmness and dignity when I responded.

Often, a waiter observing a non-disabled person and a person with a disability together will ask the non-disabled individual “What does HE want?” After 3500 years, the stereotype remains.

The Source of Jacob’s Dignity
A lifetime of family interactions prepared Jacob to respond with dignity to the “Joseph incident.” Jacob’s parents had disagreements. His brother Esau hated him. His father-in-law was a cheater. His wives quarreled, and ten of his sons were jealous of their brother Joseph.

Amidst this “mishpacha (family) vortex,” Jacob developed his unique personality and set out on his unique mission. Knowing that his personality was much more important than his disability, Jacob could respond to Joseph as a knowledgeable and understanding father.

stereotypeEmulating Jacob: A Common Goal for Families and Self-Advocates
Schools camps and synagogues still have too many barriers that prevent participation by Jews with disabilities. However, while these institutions influence us, the “family crucible” has a much greater effect on how we perceive ourselves and who we become.

Sometimes families, imagining that it is constantly difficult and burdensome to live with a disability, act in ways that do not promote dignity and participation. Self-advocates can show them what it is really like to grow up with, and age with, a disability.

Families can teach self-advocates that regarding interventions in schools, camps and synagogues, one size does not fit all. The technique that works for Cindy may not work for Arthur.

The 3500-year-old “physical disability equals poor judgment” stereotype is not likely to disappear in our lifetime. May God help all of us to face this disability stereotype with dignity, as we repeatedly prove that the stereotype is a mis-perception.

A native of Bradley Beach, New Jersey, Rabbi Michael Levy attributes his achievements to God’s beneficence and to his courageous parents. His parents supported him as he explored his small home town, visited Israel and later studied at Hebrew University, journeyed towards more observant Judaism, received rabbinic ordination, obtained a master’s degree in social work from Columbia University and lectured on Torah- and disability-related topics.
As a founding member of Yad Hachazakah — the Jewish Disability Empowerment Center, Rabbi Levy strives to make the Jewish experience and Jewish texts accessible to Jews with disabilities.
Rabbi Levy is currently director of Travel Training at MTA New York City Transit. He is an active member of Congregation Aish Kodesh in Woodmere, NY. He invites anyone who has disability-related questions to e-mail him at info@yadempowers.org  Rabbi Michael Levy participated in the recent Jewish self-advocate conference convened by the foundation. 

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Siblings Need Support Too

Don Meyer is the director of the Sibling Support Project, a national effort dedicated to the interests of millions of brothers and sisters of people with special health, developmental and mental health concerns.  As the project’s director, Don has conducted more than 300 workshops in all 50 states as well as Canada, Guatemala, Ireland, Italy, Iceland, Turkey, England, New Zealand, and Japan.  His workshops and trainings have reached thousands of parents and providers have helped establish more than 390 Sibshops worldwide.

Below is an interview I conducted with Don about Sibshops and the need to support siblings of people with disabilities. Part II will be posted soon.
– Ephraim Gopin, Communications Director, Ruderman Family Foundation

Credit: Mike Houle

Credit: Mike Houle

What are Sibshops?

For the kids who attend them, Sibshops are pedal-to-the-metal events where they will meet other sibs (usually for the first time), have fun, laugh, talk about the good and not-so-good parts of having a sib with a disability, play some great games, learn something about the services their brothers and sister receive, and have some more fun. Sibshops are evidence of their loving concern for the family member who will have the longest-lasting relationship with a person who has a disability. Often, local agencies work with other like-minded agencies to cosponsor one Sibshop for all the brothers and sisters in a given community.

How did you get involved in the issue of siblings of people with disabilities?

Sibshops is an outgrowth of work I did with dads of kids with disabilities at the University of Washington (Seattle) in the late seventies. The university had many groups for parents of children with Down syndrome that were functionally called “mom groups.” My advisor advised me to get fathers involved, which I did along with a father of a child with Down syndrome.

As I began to run these groups, I began to realize more was needed for extended family members and not just parents. That’s how Sibshops got its start back in 1982.

Who facilitates Sibshops?

We like to have both family members and service providers as a part of the Sibshop leadership. We very much like having adult sibs as Sibshop facilitators. The facilitator who is a service provider will know about the needs represented in the group and about services available in the community.  Regardless of whether the facilitator is a family member or service provider, we seek certain qualities in a good Sibshop facilitator.  We want them to truly enjoy the company of kids and have had experience working with kids; to be especially good listeners; and to have the ability to convey a sense of joy, wonder, and fun.

Are Sibshops a form of therapy?

Sibshops may be “therapeutic” for kids to attend, but they’re not therapy.  Sibshops takes a wellness perspective.  They’re a celebration of the many lifelong contributions made by brothers and sisters of people with disabilities.

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What’s so special about the sibling relationship?

The sibling relationship is life’s longest relationship.

1)     Anything you can say about being the parent of a child with a disability, you can pretty much put ditto marks around it for brothers & sisters. Studies have shown that sibling experiences parallel their parent’s experiences.

2)     Brothers and sisters will have the longest lasting relationship with the sibling with a disability, even longer than the parents. When parents aren’t there to look after the child, siblings will have to make sure the person with a disability lives a dignified life.

3)     Over the long haul, no one logs more minutes/hours with kids with a disability than siblings.

4)     No classmate in an inclusive classroom has a greater impact on the social development of a kid with a disability than their siblings.

This helps explain why I think supporting siblings is so important. Remember: parents receive more services and considerations than siblings do. That needs to be changed because the siblings will still be around long after the parents have passed on.

Don lives in Seattle with his wife, Terry DeLeonardis, a special education teacher and consultant and their  four children. Don is the senior author or editor of numerous articles and six books and received the 2007 Duncan Award from Children’s Hospital in Seattle for his work with families.  Don recently created a group for grandparents to connect with their peers. Enjoy this video about the importance of creating services for siblings.

Read our last post: It’s Jenny’s Decision

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Filed under Disabilities rights, Disabilities Trends, Initiatives, perceptions of disability