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Written by Negar
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Dear Fellow Members of the Persian Jewish Community,
I am writing this letter to talk about a painful subject that is facing many of our members, many of whom you may personally know. My intent is to discuss the judgment and shame that many of our community members with disabled children or extended family members feel. My hope is that by addressing this topic each one of us examines our attitude within ourselves, and does something to change the current situation within our community.
First let me give you a little bit of a background about myself. I'm a school psychologist, and for the past six years I have been employed by Los Angeles Unified School District (LAUSD). Five of my last six years has been spent with the LAUSD preschool department on the Westside of town conducting initial assessments on children between the ages of three to five where parents and teachers report concerns about possible delays in development. At the conclusion of the assessment many of the children are identified with various disabilities including autism, mental retardation, developmental delays, speech delays or learning disabilities.
Working on the Westside of town I personally have witnessed many Persian Jewish Families walking through our doors with special needs children, and almost every single time in addition to the pain of discovering that their child may have a disability, the families are also struggling with negative judgment from family members, friends and other members of the community, and consequently feel shame and guilt. Unfortunately in our community, many people blame the parents as though they themselves must have either directly done something wrong to the child (in reality great majority are the most wonderful caring parents you can imagine), or must have committed some kind of a sin against G-d to have this happen to them ( I know many observant people with children with disabilities). There is also an intense and many times irrational fear of what must be in other people's genetic makeup that may have lead to having a child with disability.
As I know first hand, though sometimes there may be some family history for things like autism, more often then not there is no family history. It is time for us to stop judging and blaming and time to start helping each other. We need to wake up and understand that G-d forbid this can happen to ANYONE including those that judge others and believe that their genetic makeup is impeccable. The latest numbers from Center for Disease Control indicates that today 1 out of every 150 children will be diagnosed with autism. Ten years ago that number was closer to 1 in 10,000. Our families of children with disabilities are already struggling with pain and stress of raising a child with special needs, and they do not need judgment and shame from the rest of us to add to their difficulties.
They should not have to feel that they have to hide their children from public view and exclude them from the day to day fabric of our Persian Jewish Community so to avoid other people's sneers and negative comments or to give their other children and their extended family members a chance to find a respectable marriage partner. Think about it, when was the last time that you went to a wedding and you saw a child with special needs included in the celebration? Chances are there were 500 people at that wedding. Wouldn't you think based on the latest Center for Disease Control research there would have to be at "least" a couple of autistic children in that mix? These children exist though they are rarely seen. They are real and they are human like you and me. Our community should include them and celebrate them and their achievements (yes they have achievements), and should provide their parents and families with the additional love and support that they need.
Before closing, I would like to mention another point. Many of those that make the negative judgments are the same people that try to adhere to some principal of Judaism including keeping kosher, celebrating holidays and etc. My point to those individuals is that if you look deeply within our religion you will notice that many of our great leaders also had disabilities yet G-d looked beyond their disability and chose them amongst a sea of physically perfect individuals to be our leaders for their great neshama (soul). For example we all know that Moses had a speech impediment and did not speak well. By today's standards he would probably be receiving speech therapy, yet G-d chose him, and he was one of the greatest leaders that has ever lived. Leah our foremother had eyes that did not see too well. Yet once again G-d chose her over others and made her the more fertile wife of Jacob and most of us descend from her. If G-d, the ruler of the universe, the one that made us and that we pray to everyday, could look beyond their physical imperfections and physical disabilities and see the beauty in their neshama, why do we the lowly humans think that we have the right to judge and exclude others?
I hope this has given us all something to think about so that next time when we run into a friend, family member, neighbor or a fellow Persian Jewish community member that has a child with disability we offer them nothing but inclusion, love and support.
Respectfully,
Negar |
