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.”

www.cdb.org.il

Excitement and Alacrity widespread amongst the Israeli deaf-blind community

Born in Tuscumbia, Alabama, Helen Keller was the first deaf-blind individual in history to receive a degree. Author of several books and articles, her life was characterized by great accomplishment and admiration. In May 1952, Helen Keller became the first and only world renowned deaf-blind person to visit Israel. A political activist until the end of her life, she serves as a symbol of success for deafblind and disabled communities, and the Center for Deaf-Blind Persons in Israel is happy to announce that she has paved the way for Jelica Nuccio, the first deaf-blind person of iconic status to visit Israel since. Jelica Nuccio of Seattle Washington, Project Director of the National Support Service Provider Pilot Project, will arrive in Israel in order to participate in a conference, the first of its kind in Israel, on May 9-10, 2010 in Tel Aviv, entitled “Building Bridges.”

Helen Keller traveled with a companion for most of her life, which was necessary due to the lack of a disabled-friendly environment. However, with advancements in technology and society, Jelica has been afforded many opportunities and is completely independent, married and living in Seattle, Washington. Jelica has Usher Syndrome, the leading cause of deaf-blindness, whereas Helen Keller became deaf-blind early in life after contracting an illness that was probably meningitis or scarlet fever. However, both women were pivotal well beyond the deaf-blind communities from whence they came, and the Center for Deaf-Blind Persons in Israel hopes to learn from Jelica’s experiences, as she serves as an unequivocal role model for deaf-blind people in Israel, who by and large want to lead independent lives.

Jelica will present a workshop on how to support children and young adults with Usher Syndrome (I, II and III), which is a genetic disorder that is the leading cause of deaf-blindness. Because Usher Syndrome is characterized by deafness and progressive vision loss, many young adults don’t know they will lose their vision at some point in their lives, making emotional and rehabilitative support paramount. Therefore, the Center for Deaf-Blind Persons will present a brief overview of its Role Model Program, whereby we identify and relate to youth with Usher Syndrome by helping them to understand and accept their reality through relatable mentors that also have Usher.
Theresa authored a book entitled Guidelines: Practical Tips for Working and Socializing with Deaf-Blind People, which she will discuss during the session. The Center for Deaf-Blind Persons hopes to learn from her vast professional experience in order to augment the Role Model Program here in Israel. Chaim Fuchs, Executive Director of the Center for Deaf-Blind Persons hopes Jelica and Theresa’s visit will “raise awareness of deaf-blindness in Israel and aid our professional staff in implementing related programs for deaf-blind youth.”

In addition to the conference sponsors (The Perkins School for the Blind and Keren Or: Jerusalem Center for Multi-handicapped Blind Children), the following organizations and ministries will be participating: The Center for Deaf-Blind Persons in Israel; Eliya: The Israel Association for the Advancement of Blind & Visually Impaired Children; Nalagaat; The Ministry of Welfare and The Ministry of Education. The conference will be an excellent opportunity for civil society professionals to present work in their respective fields.

The conference will be held at the "Yafe Lee" Conference Center, Ganei Yehoshua, HaYarkon Park, Tel Aviv, on May 9th and 10th. Please contact -"International" 08-6655766 to confirm arrival or send email to inbar.rina@gmail.com
The Beth David Institute’s Center for Deaf-Blind Persons hopes to help Israel’s estimated 1200 deaf-blind population in Israel to lead full and independent lives. Although we have come very far since 1952, we hope that Jelica’s visit will leave us with a message of hope for the future and new ideas for servicing the deaf-blind community in Israel.

Personal Stories: Yuri

Yuri: Moving Away but Staying Close: “I’ve been participating in Ulpan classes at the Deaf-Blind Center for several months now, and they’re really helping me learn Hebrew. Since we came to Israel from the Ukraine several years ago, I’ve been living with my mother in Kiryat Gat. But now, I’ve received the OK from National Insurance to move into an apartment in Ofakim. Of course, I’m very excited about living independently, but Ofakim is much further from the Center in Tel Aviv. So I’ve decided to stop going to evening Ulpan classes – and transfer to the morning class instead so I won’t have to travel at night, since I have night blindness. Do you want to know how seriously we take this class? One of my classmates, Sasha, had to have brain surgery. But just a few days after he was released from the hospital, he was back in Ulpan!”

Personal Stories: Roni

Meeting Roni (told by her mentor, Donna): As soon as I arrived at the high school for the deaf, a teacher introduced me to Roni, who is 17 years old. Her first question to me was, “Do you have a problem with your vision?” I answered that I did. Roni was happy to see that I was young – I’m 28. She had been sure I would be much older than she was and unable to relate to her. We started getting acquainted and Roni told me about school and about her family. She asked a lot of questions about Usher Syndrome, and I could tell she was very anxious and needed a lot of information. She had been told just two months before that she had Usher syndrome, and she couldn’t believe this was happening to her. She was tested because her cousin, who was pregnant, was found to be a carrier and recommended to Roni’s mother that she be tested, too. I answered all of Roni’s questions. She told me that she hadn’t been sleeping well since she discovered she had the syndrome. She was also sad that her boyfriend was slowly distancing himself from her since she had told him – mistakenly – that she would be completely blind by the time she was 20. Roni was very relieved to find out that I also have Usher Syndrome and that she didn’t have to cope with her feelings alone. I told her that in spite of everything, I’ve continued my life – volunteering for the army, receiving my B.A., getting married and having children. And she began to understand that she, too, will be able to do whatever she wants. Roni is a good student and I know she is motivated to succeed. She asked that we meet again and we arranged that at the next meeting, I would visit her home and meet her mother, who was devastated by the diagnosis. I told her that my mother had had a similar reaction. I think it will help Roni a lot to continue meeting with me over the coming months.

Personal Stories: Shimon

Taking Charge:
“Although I was over 50 years old, I was completely dependent on my sister when it came to making any important decisions. When I wanted to go on a trip, she was the one who decided whether I could go and what time I should get back. Even my personal bank account was in her name. Here I was: middle aged, intelligent but not able to run my own life – and I hated it! The Deaf-Blind Center helped me change my life. They helped me understand how many aspects of my life could be much more accessible to me. And as I participated in the psychodrama group here, I gained the self-confidence to stand up to my sister and tell her that I was an adult and I could take care of myself! Now, I’m happy to say, I make my own decisions and take care of my own finances.”

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Welcome to the Blog for The Center for Deaf-Blind Persons in Israel (CDB). We provide necessary social and government liaison services for Israel's estimated 1200 deafblind population.

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