Locating and Helping Arab Youth with Usher Syndrome

KIRIYAT HAYOVEL – Two representatives from the Beth David Institute’s Center for Deaf-Blind Persons (CDB) presented an explanation of Usher Syndrome last week to the “All Israel are Friends School for the Deaf” in Jerusalem. The school caters to both Arab and Jewish deaf students using Israeli sign language which is universal to both Arab and Jewish Israelis. The students seem to make no differentiation between their respective ethnicities thus embodying the name of the school in their interaction. “There is a unique model of cooperation between the two populations, as their disabilities have served to bind them beyond politics,” Spokesperson of the Center for Deaf-Blind Persons Josh Simon said. Therefore, representatives Yaakov and Yara conveyed their messages with only the need to translate occasional Hebrew terminology into Arabic on the dry-erase board behind them.

Yaakov serves as a mentor in The Center for Deaf-Blind Person’s (CDB) unique and innovative Role Model program, which essentially locates youth with Usher Syndrome and helps them accept and cope with their newly diagnosed disorder by using experienced, trained and successful adults who also have Usher. Both Yaakov and Yaara began with background information about themselves which led into personal experiences dealing with loss of vision that might have been relevant to some of the students present. The group of 26 listened intently as Yaakov explained his difficulties learning and absorbing information in a hearing and sighted world. Usher Syndrome is a genetic disorder characterized by deafness and progressive vision loss throughout life which can sometimes occur at an early age. Usher Syndrome is the main cause of Israel’s estimated 1200 deaf-blind population according to research conducted by CDB.

The decision to address Arabs in the school derives from CDB’s greater campaign to identify and serve populations with Usher and to spread the unique Role Model Program throughout the world, for which the concept is by and large unknown. Having just received a positive review from an external evaluation, the program is “ready to be shared,” said Chaim Fuchs, Executive Director of the Beth David Institute’s Center for Deaf-Blind Persons. He added, “Reaching out to the Arab sector will prove to the world that cooperation in such an area of conflict only speaks to the efficacy of the program.” CDB hopes to identify those in Israel as well as East Jerusalem, which incidentally has the highest concentration of people with Usher Syndrome in the world. Because of the political reality on the ground, it is difficult for Jews to bring these important services to Arabs in East Jerusalem. Therefore, CDB hopes to cooperate with schools and locals in order to garner support for the program and locate those that might have Usher. According to Fuchs, “We received positive feedback in regards to the Role Model Program both from external evaluators and leading professionals in the field in wake of a conference earlier this month, so we are ready to spread our knowledge and expertise in what we believe is the most effective means of dealing with Usher Syndrome.”

The organizations is currently engaged in fundraising and public relations campaigns that will hopefully make the spread of this revolutionary program possible throughout the world, beginning in East Jerusalem. Elias Kakabov, Proffesional Director of CDB said, “We have been working closely with a group of young Arab adults who could hypothetically form a unique cadre to replicate the Role Model program in areas that we can’t access.” Kakabov added, “Now we only need the resources.”

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