Stigma and Non-Disclosure

Which comes first, the decision to disclose sensitive personal information, or the fear of stigma that may result from disclosure? This is a question of many people who feel at the margins of the Jewish community, whether for physical/mental illness, sexual orientation, poverty or special needs.

For many Jewish parents raising a child with less severe or “invisible” special needs, there is a strong, inherent urge not to share the child’s challenges with educators, camp directors and youth directors. After all, if the child can “pass” as a typical child, why turn the child’s diagnosis into a “label”, with all the stigma and difference that goes along with that appellation?  With our community’s hyper focus on academic and extracurricular success, a Jewish kid who is even a little quirky or who has an artistic bent can feel left out, let alone someone who has a diagnosed learning disability.

In many cases, however, that lack of disclosure can boomerang, and result in the child acting up, getting into trouble, or even in the best case, often unable to keep up academically, and/or socially and the resulting feelings of low self-esteem.

At Matan’s recent inaugural Jewish special education national institute in New York City, 20 congregational school education directors from across the country came together to launch a 15-month program that will enable their schools to better accommodate children with special learning needs.

The two-day intensive program on March 11-12 featured a keynote address by our own Rabbi Bradley Artson, Dean of the Ziegler School of Rabbinic Studies at American Jewish University, and his 19-year-old son Jacob, who has Autism and communicates through typing.  Matan staff presented on such topics as differentiated instruction, communicating with families and developing proper systems to understand various students’ needs.

Among these many topics, Meredith Polsky of Matan’s staff told me they discussed the issue of why parents don’t provide relevant information to congregational school directors, and how to change that. My sense is that parents are fearful of disclosure because they don’t see their congregational schools as truly welcoming students with special needs. Are there any photographs of kids with overt disabilities in their promotional literature? Do they encourage children with special needs to enroll, or do they fear that being known, as the “special ed” school will hurt their ability to enroll the more academically gifted students? Once other parents see my son Danny using his walker in any public space, I often become the “confessor” in whispered, anxious voices and hear the fear of stigma loud and clear.

Until a school or synagogue is seen as really welcoming those children with special learning needs, parents will be reluctant to share, but once the schools have established themselves an inclusive centers of Jewish study, it is incumbent upon the parents to disclose their children’s special needs.

One last note: I was very pleased to see such a nice line-up of major funders for this program and hope that other Jewish foundations and individuals will follow their lead: The Adler Family Innovation Fund of The Jewish Federation of Northern New Jersey, The Natan Fund, The Solelim Fund of UJA-Federation of New York and The Jewish Women’s Foundation of New York.