This blog was originally posted here on January 8th, 2016
“The arrogance of the able-bodied is staggering. Yes, maybe we’d like to be able to get places quickly, and carry things in both hands, but only because we have to keep up with the rest of you. We would rather be just like us, and have that be all right.”
-Barbara Kingsolver, The Poisonwood Bible
Our youngest, Akiva, who has disabilities and recently turned 18, has had to be re-evaluated by local government and municipal agencies - we live in Jerusalem- as part of assessing his needs for adulthood. Sounds great. We need to make sure he has access to appropriate services for the rest of his life, and begin to grapple with where he might live in the future.
One recent visit, which included some cognitive testing, a psychosocial analysis of home life ,and a doctor look-see, also required that we, his parents, fill out a long and frustrating form, rating his independent living skills on a scale of 0 to 3.
Seriously. 0 to 3? Nobody is a 0, regardless of what their cognitive and independent skills seem. They’re alive. They exist. They’re humans of the world, living and breathing.
Considered the father of modern philosophy, Rene Descartes wrote, “I think, therefore I am.”Maybe that’s the problem. It’s 2016, and we still parse existence based on what we presume thinking or cognition is about.
And I shudder to think of what Akiva’s final number will be, how his cognitive capacity will be assessed, and how that will limit his choices in adulthood. How his number will have little to do with his sense of humor, his friendly nature, and his love of musical theater.
The Jewish tradition of creation teaches us that humankind, male and female, were formed in the image of the Creator, words that are often quoted by those who point to an ethos of human equality, regardless of difference, in Judaism.
The reality is very different. Out there in the real world, people with disabilities, young and old,and those who love them, feel distinctly apart from the rest of the community. While Jewish education, formal and informal, has expanded to offer more opportunities for children, teens and young adults who have disabilities, the number of those who can access or afford such programs, or who are considered sufficiently ‘high-functioning’ is limited.
We are grateful to live in Israel, where Akiva has had access to a meaningful Jewish education, something that seemed impossible in New York, where he didn’t fit into the hard-driving, on-our-way-to-Harvard life of the average Jewish child of our former community.
In Israel, Akiva has also had access to Shutaf Inclusion Programs, an unique informal education model that I co-founded with another mother, 9 years ago. Shutaf is a place of complete acceptance and inclusion for all children, teens and young adults of all abilities; religious and secular, rich and poor, from all cultural backgrounds. For Akiva, the inclusion opportunities offered at Shutaf are critically important, offering him a place where any perceived developmentor independent skills he lacks are not seen as an impediment to being part of the program.
At Shutaf, Akiva’s not being discriminated against, as often happens in the world of disabilities, where individuals are divided and parceled off based on their label, or on the idea of which populations of need should be together — as opposed to a united community of people with disabilities, let alone a united and inclusive general community of everyone.
But that doesn’t soothe my feelings of injustice that the system, and our compliance with the system, has removed the Creator and given us a rating scale for assessing self-worth along with presumed ‘design flaws,’ as opposed to valuing personhood and what makes us different.
That would be an act of Jewish loving kindness whose time has come, because disability is a Jewish peoplehood issue.
Beth Steinberg is the Executive Director and Co-Founder of Shutaf Inclusion Programs, offering year-round, informal education programs for children, teens and young people with disabilities in Jerusalem. Shutaf is committed to an inclusive teaching model that welcomes all participants with and without disabilities regardless of religious, cultural and socioeconomic differences. Beth blogs on The Times of Israel. Contact her at firstname.lastname@example.org