Jewish Deaf-Blind Community
by Therese Shellabarger
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."