Jewish Deaf-Blind people are a small segment of the Deaf community. Overall, less than 1% of the U.S. population is Deaf-Blind, and even fewer are Jewish, but Deaf-Blindness has a huge impact on communication and mobility. There is the American Association of the Deaf-Blind (AADB) in Silver Spring, MD which advocates for the needs of Deaf-Blind people and services such-as the Helen Keller National Center in Sands Point, NY, but there is no national advocacy organization for Jewish Deaf-Blind people. Resources designed for Jewish Blind people assume knowledge of Hebrew language and Judaism that Deaf Blind people may not have. As youth, Jewish Deaf Blind children face obstacles in learning about Judaism that go beyond those faced by Deaf people. As adults, they face obstacles participating, in Jewish events.
Common Types of Deaf-Blindness
The most common form of Deaf-Blindness in young people is Usher’s Syndrome, deafness with Retinitis Pigmentosa (RP). The first symptom of RP is night blindness, which means difficulty seeing at night. In the final stage, the person’s vision narrows to a “tunnel”, hence the popular term for RP is “tunnel vision.” People with Usher’s inherit it from both parents; those who inherit from only one parent are called “carriers” and do not develop Usher’s themselves.
There are three types of Usher’s; Type 1 includes deafness at birth, balance problems, and blindness that starts early within the first ten years of life. With Type 2, the child likely to be hard of hearing with normal balance, and blindness starts in the late teens. Type 3 is similar to Type 2, but RP develops in adult life. People with Usher’s Type 2 and 3 are more likely to use hearing aids and speech reading to communicate. Approximately 5% of people born Deaf have Usher’s.
The leading cause of Deaf-Blindness in older adults is Age-related-Macular Degeneration (AMD) which rarely. occurs before age 50. For some people it may be caused. by heredity, and in other people by other factors such as being extremely nearsighted, or certain eye infections such as histoplasmosis. It is the reverse of RP, as people with AMD can see what’s happening at the sides but will have one or more ‘black dots” blocking the view in the center of their vision.
Deaf-Blind Culture
Deaf-Blind people have their own cultural values but their identity issues are similar to those faced by Deaf people. Jeffrey Bohrman, who lives in Columbus, OH said, “Many young people, especially the teens, don’t like the term “Deaf-Blind” arid prefer to merely say “Usher Syndrome” later on they would accept their Deaf-Blindness like I did.”
Deaf-Blind people may move to a large city to meet others and get better services. The Deaf-Blind Service Center in Seattle, WA has helped that city become one of the most accessible in the U.S. Robert Blumenthau is a Seattle resident and he reports that there are ten Jewish Deaf Blind people living in the area, and in addition, there are fifteen Jewish Deaf. Approximately six certified interpreters are Jewish. Other places in the U.S. which have large Deaf-Blind populations include Washington, DC, Lafayette, LA, and New York City.
Jeffrey Bohrman is a former president and long-time member of the AADB. He said, “The only Jewish activity during the AADB conferences have been the religious services. For years they were held on Saturday evenings, which so happens to be the first day of the conference week. It was very often very poorly .attended although there were quite few Jewish folks attending the conference. For the last two conferences, we tried something different–we had such services on Sunday mornings while the Catholics and Protestants had their services, and they were much better attended. The last one which so happened to be herein Columbus, OH was attended by approximately 20.”
Jeffrey Bohrman
There are a variety of technologies that Deaf-Blind people use. For those who prefer large print, closed-circuit TV (CCTV) magnifies small print, and Ultratec manufactures TTY’s with Large Visual Displays (LVD) for easier, reading. Braille has long been used for printed materials and to display. text, but it has found new uses. The invention of TeleBraille in the 1980’s combined with the Telephone Relay Services (TRS) in the 1990’s has made it possible for Deaf-Blind people to carry on telephone conversations in complete privacy. For one-on-one communication, Deaf-Blind people who grew up Deaf will often use tactile sign language and fingerspelling into the hand.
TeleBraille
Support Service Providers
When attending a social event, a Deaf-Blind person may use a Support Service Provider (SSP) to keep them informed of what is going on. Another term one may see is Intervenor. Bohrman explained, “Intervenor is a popular term used in Canada. But it’s used merely for children- in many cases. They have certified programs for this in Canada and I believe we have one in U.S. Most of us view the word “intervenor” as meaning that the person is more involved with the Deaf-Blind person than a SSP. Intervenor helps the Deaf-Blind person with more intensive information especially in t he area of environment and sort of help the Deaf Blind person make decisions. SSPs don’t do this- they merely help guide the Deaf-Blind into the , community by taking them to places and doing things entirely at the Deaf-Blind’s decision and request. We often refer to SSP as “interpreter/guide” although most of the SSPs aren’t often interpreters per se.”
David Bar-Tzur is a sign language interpreter in Rochester, NY who has worked extensively with Deaf-Blind people. He said that SSP’s have an important role in providing access to visual information. “Just as Deaf people have often been left out of what is happening about them linguistically, Deaf-Blind people miss a great deal of visual information. The interpreter needs to supply this as part of Deaf-Blind culture. They must be informed of why you need to leave, when you will meet them, leave them in a place where they will be oriented and safe while you are gone, and tell them who you are when you return. Independence is also a matter of etiquette and the SSP needs to enable the client. It is not unusual for Jewish celebrations td be followed by eating and so an example independence would be the SSP bringing the consumer’s hand to where the utensils are instead of putting it on the tray in a food line.”
People might assume that-like sign language Interpreters-SSP’s have certification standards, but there are none. Nancy O’Donnell, Information Specialist at DB-LINK, a research center at Western Oregon University said, “There is currently no national certification or standard for SSPs or Interveners. Training for each is done on a local basis and is custom designed by the agency providing the training.” The Deaf-Blind Service Center (DBSC) in Seattle, WA is one of the few programs which trains, hires and pays SSPs; most others use volunteers.
Ilissa Rubinberg, Coordinator of the SSP Training Program at the HKNC said that SSP’s are in a relatively new field and setting up certification standards takes a long time There are also issues of who to pay for training and what organization would be responsible. The Helen Keller National Center (HKNC) in Sands, NY established a 6-hour SSP training program in
1995, but it is a non-funded volunteer program. The HKNC requires SSP’s to be trained before they will accept them to work with clients. Workshops are offered 2-3 times a year and cover topics such as Tactile Sign Language, mobility, overview of Deaf-Blind Culture, and responsibilities of an SSP.
Like many CODAS who have become interpreters, SSP’s are often motivated by personal reasons. Ruth Morris is a volunteer SSP in Los Angeles, CA. “When 1 was small,” she said, “as I was boarding at school for Jewish deaf, school in East of England on during World War II. There was Jewish deaf partially blind boy, as he always cheer me up. After the war, we all go back to London, there was Jewish Deaf partially blind from Poland, when she was 12 and I was 10 years old, since we have been good friends. When my husband and I Immigrated to Los Angeles, CA on 1963 with our two l still think of my friend all the time, that’s why 1 became Involved with deaf-blind in Braille Institute.”
Maintaining Independence
Robert Blumenau learned he had Usher’s during his adult life. Born and in Michigan, he attended private Deaf schools, then transferred to a public high school. He attended Gallaudet University where he studied accounting and also learned sign language. He transferred to Rochester Institute of Technology’s National Technical Institute of the Deaf (RIT/NTID) and received his degree in accounting and computers in 1972. After being diagnosed with Usher’s Syndrome, he attended the Helen Keller National Center for Deaf-Blind Youth in Sands Point, NY and received training in tactile ASL, Braille, and computers. He has remained a member of the Jewish Deaf Congress (JDC) and was recently re-elected as Treasurer of Washington State Deaf-Blind Citizens; a chapter of the American Association of the Deaf-Blind (AADB).
Jeffrey Bohrman grew up in New Jersey, “across the river from NYC”, attending Clarke School for the Deaf in Northampton, MA. His family moved to the Poconos in Pennsylvania during his teens and he attended high school in Philadelphia. After graduating from high school, he went to college, eventually earning a Ph.D. in Pharmacology from University of the Pacific in California He worked for many years as a research toxicologist but later became director of Ohio’s Deaf-Blind program. Bohrman said, “I’m married to hearing-impaired gal and we have two grown children.”
Jay Ravitsky lives in Philadelphia, PA and has a Deaf-Blind sister. Both have Usher’s syndrome. He first attended Pennsylvania School for the Deaf and later transferred to American School for the Deaf In West Hartford, CT. Ravitsky work as an administrative support clerk for the U.S. government. He is an active member of Philadelphia Hebrew Association of the Deaf and the AADB.
Jaime Recht grew up in New York City in a hearing family. She has one sister who is deaf, and both have Usher’s Syndrome. She attended Lexington School for the Deaf and Gallaudet University. She is married to Scott Recht, Deaf, and has two sons, hearing. “I overcome my limitation”, she said proudly. “I would not allow to stop me raising my children, I do my best as a Deaf-Blind mom.”
Jewish Identity
Blumenau learned his Jewish identity by attending Jewish Sunday school for Deaf students, and he also celebrated annual events such as Hanukkah and Purim. As a youth, he was the only Jewish Deaf person in his area, so this motivated him to attend JDC Conventions, where he met other Jewish Deaf-Blind people. Since moving to Seattle, he said, “I had asked for other Jewish Deaf and Deaf-Blind and they mentioned me there are some-I attended temple where other one or more Jewish Deaf Blind taking the services with help of interpreters.”
Robert Blumenau
Bohrman learned of his Jewish identity at age five. He said, “My first recollection was going to the High Holiday Services at then rented YMCA room. My parents were among the founders of a Reform Temple in the Bergen County in New Jersey back in 1948.” Bohrman usually attends services with his wife. He uses tactile interpreters during services and also during some rituals. He said that interpreters are funded through Columbus Jewish Federation. Blumenau maintains his Jewish identity by observing the Jewish holidays and cooking Jewish food.
Ravitsky learned of his Jewish identity from attending Jewish Sunday School arid teaming Hebrew. He learned about Jewish holidays and customs from his parents and grandparents. “I always attend Jewish Deaf cultural, especially, went to Israel with Jewish Deaf Group,” he-said. “What I was really wanted was to learn how to explore some interests through Jewish particulars.”
Recht teamed of her Jewish identity at age ten from her parents. Asked how she maintains a. Jewish identity, she replied, “I feel the same (as) for others. am no different except Deaf-Blind person.”
Siegel attended a mainstreamed day school with a large program for the Deaf in Cleveland, Ohio. He became aware of his Jewish identity through interaction with his parents, teachers for the Deaf; and by attending a synagogue Sunday school. He occasionally rides with friends to Jewish cultural or religious events.
Access To Jewish Events
Transportation is difficult for Deaf-Blind people, but thanks to paratransit a transit service for eligible disabled riders, the situation has improved. Bohrman and Siegel both use paratransit, but Blumenau prefers to use the public transit in Seattle, which he describes as “the best.” The signs are easy to read and he says the people around him are very friendly and helpful. Because they cannot drive, Deaf-Blind people who work may not have time to attend Jewish services.
Blumenau said, “In Seattle many people who are Jewish Deaf or :Deaf-Blind do -not attend any service or social together as they had before and was dropped out due to work conflicts.” To attend synagogue and social events Ravitsky and Siegel both rule with relatives or mends while Bohrman and Recht ride with their spouses. An other solution, Siegel suggested, ‘Transportation Could be provided by various Jewish groups to gradually eliminate the social isolation.”
“I attend services once in a while, but always during the High Holidays, Bohrman explained, “I was member of HAD in Philadelphia and one in Chicago when we lived there. In addition, we were members of Jewish Congregations both in Oak Ridge, TN (Conservative) and in Cincinati, OH (Reform). I am an occasional member of Jewish Deaf Congress and have attended several of the conventions during the ’70’s.
Many Jewish Deaf people in the U.S. find it difficult to become fluent in Hebrew, and even more so for Jewish Deaf-Blind. Siegel commented, “I once read the Braille Jewish High Holy Prayer Book but it was awkward at first due to some Hebrew language.” Ravitsky suggested that foreign language software may be more accessible than Hebrew classes, as he suggested, “Would like to provide some software on the computer what I can practice to read Hebrew, Judaism and Judaism sign languages.”
Bohrman noted that in Orthodox settings, it is important for an interpreter to be the same gender as the person they are interpreting for. In one situation where he had a female interpreter, Bohrman sat in the women’s section. He commented, “The rabbi explained to me later on that he viewed this as if I was a hospital patient and was attended by a female nurse or doctor!”
Rabbi Mordechai Shuchatowitz has been called upon in the past to make Halachic rulings on Deaf issues. “Jewish law requires that men and women be separated in synagogue, ” he explained, “which precludes a woman interpreter from sitting in the men’s section as well as man from sitting in the women’s section. Although she is there to help him for a legitimate and very important purpose, her presence in the men’s section would pose Halachic problem for the rest of the men there, as would his presence in the ladies’ section. The only solution know of is to somehow find a male tactile interpreter for deaf-blind man. This may not be readily available, but availing him a proper means of communication within the guidelines of Halacha is so important that hopefully it can be accomplished, with the help of G-d.”
Braille And Large Print
There are many Jewish texts which have been converted to Braille or large print, but may be difficult for the average Jewish Deaf-Blind person because they use Hebrew words or assume the person is very knowledgeable about Judaism. For example, the Jewish Braille Institute (JBI) publishes the Jewish Braille Review, but its contents are described as “scholarly.” Prayer books are readily available from the JBI, which has the largest collection of Jewish Braille and large print materials in the world, including both prayer books and a complete Jewish lending library.
Pearl Lam, a library specialist at the JBI said, “We send materials directly to individuals in need of our services. If an individual needs: two sets of prayer books, for example, one for home and one for the synagogue, we will be happy to supply two sets. Synagogues and other community institutions should feel free to refer people directly to JBI. If an individual uses a specific prayerbook not on our list, we would consider enlarging (on a photocopy machine), a portion, or even the whole prayer book, depending on its length.”
There are also financial issues that make it difficult for smaller synagogues to be accessible for Deaf-Blind people. Shelley Kaplan is chair of the United Synagogue of Conservative Judaism (USCJ) Committee on Accessibility. The committee, encourages Conservative synagogues to make their services accessible but is unable to provide funding to achieve this goal. “USCJ doesn’t help defray expenses, unfortunately,” Kaplan explained. “Our committee has certainly discussed this. service, but it would require a major fundraising effort, for which I don’t currently, have the time to undertake. It is, a long range goal, however.” The committee sets yearly priorities and Kaplan said that this year’s goal is focusing on “people with visual impairments.”
Bar-Tzur said, “It is not unusual. for Jewish Deaf-Blind people as well as Jewish Deaf people to be underserved by Jewish religious organizations. The traditional Jewish attitude has been that Deaf people do not have to concern themselves with Jewish observance because they ate largely considered putar (not obligated) along with mentally retarded people, and children. ” However, he adds, “Now that Sign Language is becoming known and hence away to communicate the Torah to Deaf and Deaf-Blind people, this is being reconsidered.. The best place for a Jewish Deaf-Blind on to start Is at a synagogue , that already has interpreted services for Deaf people and see if some sort of arrangement can I for the needs of the Deaf-Blind person to be met as well.”
Marla Berkowitz is the Deaf co-founder of the Jewish Deaf Resource Center in New York City, and an active member and founder of the Access program at Congregation B’nai Jeshurun in New York City. For the past three years, she has been involved in providing interpreting for Jewish Deaf-Blind people at B’nai Jeshurun services and also the temple’s Introduction to Judaism classes. “We had a Deaf-Blind person attend the Introduction to Judaism class and hired Deaf interpreters for the Deaf-Blind person,” she said. “Finding qualified interpreters was difficult but somehow we managed to find them if we were given time in advance. Also, we got help from the Deaf-Blind person to recommend names of interpreters.” When asked what is needed she replied, “As serves providers for Jewish Deaf-Blind, we need more hands-on training how to provide services better for them.”
Most Notable Moment
The Bar or Bat Mitzvah is often the most memorable moment in a Jewish person’s life. Blumenau said, “I was Bar Mitzvah when I was 13 at all-hearing temple as I was oral Deaf. I was trained to read Hebrew by Israeli student teacher at CID 1n St. Louis for two years. I was well performed as Bar Mitzvah with help of my dad sharing prayers and oral interpreter.”
Bohrman had his Bar Mitzvah as an adult. “The highlight of my Jewish life was looming Bar Mitzvah at age of 39 years! My parents thought would be too difficult for me to study for the ritual which normally takes place at the age of 13 years.” The reason was-simple, he explained, “I was attending a residential school although the schedule did offer some assistance. At that time I was low vision and so hence was able to do the reading. My copy of the Torah reading was enlarged via the copier. Also at that time, I wasn’t into signing for I did not learn formally until I was 41; however, I did have a volunteer oral interpreter who assisted me with my training.”
Ravitsky said that the High Holidays are the most meaningful to him but added with pride, “I did learned to read and speak the Hebrew when I was around 10 years old with Hebrew instructor, then became the first Deaf-Blind Bar Mitzvah in February 1967.”
Recht that the most meaningful Jewish events in her life are Rosh Hashanah Chanukah, and Passover. Siegel said, “My most important Jewish moment in my life was called Bar Mitzvah at a reform synagogue in Cleveland, Ohio when I was 13. I was so fortunate when a rabbi was willing to do it without speaking much Hebrew.”
