My disabled children were ostracized — by the Orthodox
This essay is part of our ongoing series, Outside the Bubble: Class and Inequality in the Jewish Community. It explores the class divides in Jewish communities of all denominations, and the financial struggles belonging to these communities can incur. Please email your thoughts and essays to [email protected].
When my husband and I got married, we decided to increase our level of practice. We moved into an Orthodox community and prepared to start our lives together. We knew we wanted our children to grow up with a clear Jewish identity, with a shared love of Jewish faith and traditions, and without some of the ambiguities of practice that my husband and I grew up with. But we had no idea what we were getting ourselves into.
Fast forward a few years, we found ourselves parents to triplets, a special needs foster son, and another daughter. It wasn’t long before all of our children had a host of painful labels, including ADHD, global developmental delay, autism, OCD, anxiety, depression, epilepsy, asthma, fine motor delays, speech fluency dysfunction, and cognitive impairment. Each of my children is closely monitored by a team of specialists – developmental pediatricians, neurologists, behaviorists, pulmonologists, psychiatrists, speech therapists, occupational therapists, physical therapists, special educators, and more. Most of these specialists are out-of-network or not covered by our insurance plans at all.
The specialty medications each of them takes are costly. They would weigh down any family. But to a family coping with the already exorbitant costs of being Orthodox, they are downright prohibitive. This is how it goes for Orthodox families. Even if you don’t have a lot of money, you aren’t given a religious exemption relieving you of the excessive grocery bills and education costs associated with being Orthodox. Just because we had huge extra costs, we weren’t given a reprieve from the cost of ritual objects such as tzitzit, mezuzot, tefillin, sheitels/tichels, kippot, lulavim and esrogim, siddurim, Shabbos candles, tzedekah, and shul dues.
The costs don’t disappear, and neither do the community expectations for our lifestyles, or the assumption that because my husband and I are professionals, we can afford it all, regardless of circumstance. We can’t. We’ve already sacrificed vacations and dinners out just to keep the lights on in the midst of all the other bills. Our cars are old, our clothes aren’t replaced every season, I don’t have an expensive sheitel anymore, and extracurricular activities are limited.
We ultimately decided that our children wouldn’t attend day schools. We could never have afforded it. The schools were also unable to provide the kind of care my kids need.
But when you’re Orthodox, you’re supposed to go to day school. And I can now tell you first hand that children who are unable to attend day schools because of financial, medical, social, or developmental differences are ostracized, left out, and taught that they are too different to fully participate in our Orthodox communities.
My children are now doubly ostracized, both because of their developmental and medical differences and because we’ve made the financial and developmental decision to send them to secular schools.
This is a shonda. The Orthodox community should be welcoming to anyone who wants to join. And yet many religious Jews believe that there is never any excuse for not sending kids to day school or Jewish summer camp (my kids play in the back yard in the sprinkler all summer), or for not having the biggest esrog. There is no excuse for not “Keeping Up With The Kleinfelds”.
It’s ironic that there’s so much pressure to spend big on tuition and camp and wigs and esrogs, precisely because we as a community do a wonderful job of ensuring that families in acute financial crisis receive generous support. We don’t allow a family to go without Shabbos dinner if we can help it. We support our friends and family in times of medical instability. In the Jewish community, we support each other for all visible, public struggles, and even some hidden ones. My own family was on the receiving end of such a generous amount of chessed from our community (both financial and in the form of Shabbos meals for an entire year) that we will never be able to repay.
We frum Jews are so good at taking care of our own in a crisis, but when it comes to the mundane needs of a middle class family, we fall short. And if you can’t afford day school, you’re instantly considered less than those who can.
I do not at all believe that it is the responsibility of the community to make our financial situation easier. But I do think it is important to restore a sense of perspective and balance to our culture. There was a time that even mainstream Orthodox Jews went to public schools and their Jewish education was left to their parents, their synagogue and extracurricular Hebrew school programs or tutors.
Instead of focusing on pressuring all families to send their kids to expensive — and sometimes developmentally inappropriate — day schools, more emphasis could be placed on shul-based learning opportunities for children. There are lots of opportunities for adults, but so few for children since it is assumed that all children go to day school. There should be more Shabbos groups for children, more kid-friendly chessed and mitzvah opportunities, for example, involving children in bikur cholim projects, or in community challah-bakes, or involving children in kiddush setup and cleanup, or taking community field trips to Jewish museums, or establishing teenage mentors for younger students.
In this way, the burden of educating children is shifted, but so, too, are the costs. This is not specific to special needs children, but would benefit all children in the community, whether they attend day schools or not.
The Orthodox community should welcome all members with open arms and without judgment.
Karen Cohen is a busy mom of four, all of whom have special needs. She is passionate about special needs advocacy, particularly within the Jewish community.