Posted by Michelle K. Wolf
It’s not everyday that I get emails from both the Orthodox Union/Yachad and the Religious Action Center of Reform Judaism on the same topic –increasing disability inclusion in our synagogues. And it is even more rare to read that the four major Jewish streams—Conservative, Reconstructionist, Orthodox and Reform—have come together for the first time on the issue and created a new joint initiative called “Hineinu” (“We are here”).
The focus of this new initiative is on the sacred space of our synagogues. By joining together, the four streams will share their best practices and encourage all synagogues to proactively become more welcoming communities, both physically and emotionally.
During the first year, the plans are to:
• Create a network of synagogues and professionals among all four movements that will help achieve the goal of making disability inclusion the standard at every synagogue
• Convene community leaders, sharing materials and online resources, networking between lay leadership and disability professionals, and fostering the establishment or growth of synagogue-based inclusion committees.
• Author and share a community-wide resource guide with simple and low-cost suggestions for how synagogues can begin to be more disability Inclusive.
Interestingly, this initiative started at both ends of the observant spectrum, with Deborah Berman, LCSW, director of social work for Yachad and Rabbi Lynne Landsberg, senior advisor on disability issues for the Religious Action Center of Reform Judaism. The Conservative and Reconstructionist movements were then invited to join.
Each movement will implement the suggestions to meet the needs of their own constituencies and will share those adaptations for its specific practices, on their movement websites. “There will be no sharing of religious services or practices between the OU and other denominations – that is not the goal of Hineinu,” said Dr. Jeffrey Lichtman, international director of the National Jewish Council for Disabilities (NJCD), which includes Yachad.
Rabbi Lynne Landsberg, the Senior Adviser on Disability Issues for the Religious Action Center of Reform Judaism, said:
"In Berachot (34b), the Talmud teaches that a synagogue must be built with windows in the sanctuary. I believe this is so we can see who is outside and unable to join us. As Jews, we have to maintain 'mental windows' everywhere so that we can recognize all people, including people with disabilities, as people first. We must look beyond the disability—beyond the 'container' —and see the person within, the person with often unacknowledged, and therefore, untapped potential."
As we get ready to celebrate “Thanksgivukkah,” next week, let’s take a moment to reflect on this historic unity around such an important community issue and hope that this can lead to other collaborative efforts in the future. Who knows? Maybe even Congress can learn a lesson or two on cross aisle cooperation for the greater good.
12.5.13 at 8:56 pm | The first national Leadership Institute on. . .
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11.3.13 at 10:36 pm | Teachers-in-training want to include more. . .
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4.21.11 at 11:23 pm | In the search for a "home" for our young adults. . . (8)
November 15, 2013 | 12:00 am
Posted by Michelle K. Wolf
On the eve of a first-ever, three-day summit in Washington D.C, Suzanne Wright, co-founder of Autism Speaks, and grandmother to an autistic child, called for a National Plan for Autism, to create a coordinated, national response to the 3 million and growing number of children and adults now diagnosed with autism (current rates are 1:50 according to the CDC).
What’s the problem with that? Don’t we disability advocates want more federal dollars going to help families who have children, teens or adults with autism?
Sure we do, but unfortunately, the pity-evoking, semi-tragic tone Wright used with her “Call to Action” has resulted in a huge cyber-backlash from adult self-advocates who have autism, and many parents as well.
Here’s an excerpt from Wright's opinion piece:
“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. …
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.”
Her relentless focus on the burdens of raising a child with a developmental disability is really scary to me—after all, if having a family member with severe special needs is such a tragedy, why not remove those kids/teens from their families and communities? Wouldn’t life be easier all the way around? That was the conventional thinking for too long in this country, resulting in such horrors as Willowbook in New York, and unfortunately is still the norm in many countries around the world.
One parent blogger, Shannon Des Roches Rosa, who also a co-founder and senior editor at Thinking Person's Guide to Autism felt that Wright’s letter was
“ham-fisted” (strikes a great chord to a Jewish blogger) and outraged “at her using our lives to yank John Q. Public's pity chains.”
And from an adult with autism:
“We are teachers, psychologists, parents, somebody's children, researchers, scientists, artists, musicians and many, many more. There are many roles for us in the organizations which claim to represent us and work towards improving supports for us… Please remember: Nothing about us, without us.”
In an interesting historical side note, on Nov. 15th, the White House is hosting an observance of the 50th Anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, signed into law by President Kennedy in 1963. Originally called “The Mental Retardation Construction and Facilities Act of 1963”; this was the first federal law to promote community-based health care and provided federal funding for such facilities.
What families and adults with autism and other developmental disabilities need isn’t pity. We need an update of that 1963 law to ensure adequate financial assistance for families, with more job opportunities and affordable housing options for adults . Overall, we need a system that is built to help, not hinder, access to needed services and support.
November 3, 2013 | 10:36 pm
Posted by Michelle K. Wolf
“Disability is now understood to be a human rights issue. People are disabled by society, not just by their bodies. These barriers can be overcome, if governments, nongovernmental organizations, professionals and people with disabilities and their families work together. “
--From the first ever WHO/World Bank World report on disability, Sept 2013
Last week I had the opportunity to spend an afternoon with 12 bright and promising Masters of Education students at the American Jewish University on the topic of teaching students/campers with special needs. A majority of the dozen students either had siblings with special needs, had worked as an 1:1 aide with a youngster with special needs or had encountered campers who had special needs, yet this was their first class addressing the issue directly.
The students were very open to idea of including students/campers with special needs, but one young man pointed out that “everyone keeps talking about inclusion but no one is telling us how to do it.” In some cases, trying to include campers with more severe behavioral challenges, especially if they were prone to violent outbursts, did not end well, with some campers sent home. A big part of the problem was the lack of honesty on the part of parents on the application form, and the fear that parents had that they if they fully disclosed their child’s challenges, they would be excluded from the program.
Another key issue was a lack of in-service staff training. One of the students told me he was recruited by a religious school in Boston to be a 1:1 aide for a student with autism, and his total training consisted of being given one article to read about autism. Another student talked about being matched up a very large male camper with special needs, who required physical intervention, and that she needed to ask for help from a male counselor, who was closer in size to the camper.
We covered a lot of ground during the 2.5 hours we had together including the concept of Universal Design, how the Regional Center system works in California, the difference between learning disabilities and developmental disabilities and the tension between inclusive and separate programs for students and campers with special needs.
I came away from the experience with conflicted feelings: grateful for the opportunity to meet with these students and hopeful, that so many of them were truly committed to including students and campers with special needs in their future work environments and also frustrated that their curriculum wasn’t yet providing the nuts and bolts of working with youth and teens with special needs that they will need to succeed.