I recently read a blog post of a mom who had a baby with Down syndrome. While researching the condition she became aware of the atrocious conditions under which children with special needs kids in many countries live. After seeing children literally tied to cribs she and her husband made the decision to adopt two children with Down syndrome from FSU. She posted images from the appalling condition in the orphanage and I cannot get those pictures off my mind.
I contrast this with my situation living in Manhattan, a large and wealthy Jewish community. Our Jewish nursery schools have fourteen children with three teachers yet the door was repeatedly slammed in the face of my daughter simply because she had a diagnosis. The situation is more subtle and the treatment of special needs children perhaps less egregious than the orphanage in Russia but the sad principle is unfortunately the same.
However, there are sparks of light and hope in this otherwise dark blanket of discrimination. In Israel, a lady by the name of Adina Tal saw the opportunity to create a theater for the deaf-blind population and The Nalaga’at (“Please do touch”) Center was born. Theater is a medium that relies on communication, yet its actors are both without sight or hearing. Most of the actors of Nalaga’at were born with Usher syndrome, a condition where children are born deaf or hard of hearing and then gradually lose their sight as well so that by their early twenties, people with Usher syndrome, live in complete silence and darkness. In addition most of the actors are foreign born speaking Russian and not Hebrew, further limiting interaction. But Adina, this marvelous lady with a vision made the impossible possible and used tactile sign language to give a voice to those who have none. She also started a cafe “Kapish” with deaf waiters and a restaurant Blackout with blind servers which is pitch dark to afford diners what it is like to eat as a blind person. Refer to my blog from our visit to the restaurant – http://www.metroimma.com/profiles/blogs/an-enlightening-experience-in-the-dark
Gavin and I saw the show today and I was very moved by what she created. I was also so proud when I consider that Israel is the only country in the world to truly serve this unique population. What a Kiddush Hashem (Sanctification of G-d’s name) to believe in the potential of every person.
Usher’s syndrome seems like such a cruel disease. To take someone who is already deaf and then see them gradually lose their sight and transform their silent world into darkness…..Why does such a disease exist, why are some people affected in this way?
People like Adina understand that sometimes “Why” is not a productive or useful question. A much better question to ask and challenge to rise to is “What” – what can I do to make life better for these wonderful, brave people? What is our response as a community to disabled people?
PS: I strongly encourage everyone should see this show. jdeal is currently running a special deal at http://www.jdeal.com/deal/29550/nyu-skirball-center/new-york
Originally published: January 28, 2012
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