Who is the real expert on fringe Jews?

Posted on August 3, 2007

I have an appointment with my rabbi for next week.

I am scared.

The problem is that I can’t trust what’s in my head. I can’t trust my emotions. My counselor has observed this, too, saying that I can’t approach situations from a purely emotional stand. I have to go back to the facts, to what I know is real.

Sometimes, though, it is hard to differentiate between what is my interpretation of what I see around me and what is actually real. It is particularly hard when it concerns me.

There is a woman at my shul who has a child with a fairly severe disability. There is little hope for this child to successfully navigate any sort of shul-offered children’s programming or bar mitzvah studies without individual and long-term assistance, such as a personal tutor. This woman has been an advocate for children with disabilities and their parents since her own child was diagnosed shortly after birth. Not one visible change has been made to the children’s programming. No tutoring has been offered. This woman cannot enjoy Shabbos at shul because she is spending every moment assisting her child. She told me in tears that she is considering leaving the shul because it seems blind and deaf to her needs.

Not long after she told me this, another woman, a medical doctor who has children of her own but none with a diagnosed disability, spoke up at shul on behalf of children with disabilities and how to integrate them better within shul programming. Suddenly the board was interested. A committee was formed to study the issue.

When I discretely asked why no one was interested when the mother spoke but were after the doctor spoke, I was told that the disabled child’s mother was seen as too close to the issue and as such, was too emotional to be trusted. Yet the doctor, being a doctor and not having any children with disabilities, was an impartial, trusted source. Now they could listen.

By this logic, I am too close to the issue of depression. I am too emotional to be trusted. Even though I know my depression inside and out and can usually find words to express what’s going on. Even though I have perhaps identified some of the problems–lack of communication, insufficient community education–and proposed solutions that would accommodate a medium-sized shul with an overworked rabbi and a strapped budget.

Certainly, it would be nice to make a difference for me, to find the Jewish support I need. But that is not enough. There are far too many others, such as this woman with the child with the disability, such as Rabbi WAC’s Fringe Jews, who are not finding support either. Someone needs to speak up for them. If that responsibility falls to me, I will accept it and do the best I can.

But how can I provide insight or guidance or be effective in any way if I can be written off as too close to the issue, too emotional, or worse yet, just another of the mentally ill?

It would seem to me that, having lived with this illness for most of my life, I would be something of an expert on it. Yet expertise is not something I can attribute to myself if it is not corroborated by others, is it? Can a teacher really call himself a teacher if he has no students?

And even if I could attribute expertise to myself, how does that have any impact on those many who will only listen if the speaker is objective, rational, and preferably has formal, post-graduate level training on the topic?

Or maybe my feeling ineffective and powerless is all coming from within, a product of the very illness I feel ineffective speaking about.

Too many questions for this erev Shabbos. I’m going to go braid the challah.


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