My son, Meyshe, and I were on the cover of J.’s Jan. 21 issue, and we were interviewed for the article “Jewish housing crisis: Aging parents fear for their special-needs kids.”
In response, Esther Fuks wrote in a letter to the editor that the seriously mentally ill were left out of the story. She is absolutely right, of course.
Though it was not the focus of that article, the dearth of options for the seriously mentally ill, and for all of the Jewish disabled community, is similar and shameful. There is not a family in existence that isn’t touched by someone with a disability. Society is well past the age when those with illnesses were and differences were set outside the encampment. But what we do now is make them invisible. I am sure Ms. Fuks knows what I am talking about. Meyshe’s own family largely steps around him. They don’t reject him, but neither do they make an effort to engage him. He knows it. He feels it.
Most people are not surprised that Meyshe is highly intelligent (they’ve seen “Rain Man”). But what they don’t expect is that he’s deep. Every disabled person is a whole being with the same joys, fears, insights and blind spots as the “neuro-normals.” So if he’s so smart, why does he need such assistance? This is what Meyshe said: “I am too honest and pure of heart, and there are people out there who wouldn’t blink to take advantage of me.”
How sad it is that honesty and pure-heartedness are liabilities, but I can’t change the world.
So who will watch out for my son when I am gone? I approached the Jewish Federation. They told me to go to Jewish Family & Community Services, who told me to talk to the JCC, who directed me back to the Federation. These are all excellent organizations that are indispensable to our community, which illustrates how good people and good organizations can “invisibilize” those with differences. It’s just not a category in their purview.
There are long-term housing opportunities for people with a variety of differences, and I was assured that they would certainly accommodate Meyshe’s needs as an observant Jew. But this is insufficient, and would put him in the position of advocating for his own needs as a Jew. His needs might be accommodated, but would they be encouraged, nurtured and instructed, and would he be alone in observing them? Who will make a seder on Pesach? What does he do when it’s the holiday season and everyone else is singing carols and decorating the tree?
We parents of children with any kind of disability know that it is up to us to provide for them after we are gone. My son can live in any number of places, but I want him to thrive. Wherever he lives, this will be his family, and his family should be Jewish.
I know there are others in my situation. I just have to find them so we can create the Jewish group homes that do not as yet exist. It is a gargantuan project, and I cannot do it alone. I am looking for others with my same concerns who want to be involved in doing something for our Jewish children’s futures. If we put our hearts, brains and talents together, we can effect change. Please contact me at [email protected].