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Nov. 26, 2009
FRIMET ROTH , THE JERUSALEM POST
An
online version of this article was
originally published on the Jerusalem Post's website
 Nearly
2,000 years ago the Talmud recognized that finding a partner for a
happy marriage is a miraculous feat. "To match couples together is
as difficult as the splitting of the Red Sea," it tells us.
For young adults with
disabilities, even splitting a sea does not capture the difficulties
they must overcome in order to marry. One determined couple tackled
them bravely.
Shalom is unaware that
he is a trailblazer. This, he says, is just "the fulfillment of a
dream of mine." When asked for how long has he wanted to marry, he
responds, "From age zero."
Bearded, casually
groomed, handsome and self-possessed, he is forthcoming about his
engagement to Ronit. She is "smart, wise, serious, full of
self-confidence and pretty," he assures us. His indistinct speech is
overshadowed by its articulateness. Both Shalom and his fiancיe
have Down syndrome.
Shalom's mother Bina
sits beside him detailing the upcoming event, at times reverting to
English, which he does not understand. Unperturbed, he waits for the
conversation to return to Hebrew.
The couple first met
many years ago at summer camp, but then lost contact. Several months
ago they bumped into each other again at the Central Bus Station in
Jerusalem. From there followed dates at cafes and flowing
conversations. "We have tons to talk about," Shalom says. "She loves
to laugh and sometimes I make her laugh." She has dubbed him "Matzhikon"
(funnyman), he adds.
There was no formal
marriage proposal. Once both sets of parents understood that their
children were in love, they met and decided to arrange for them to
marry. Handling the logistics of an event for the 950 invitees has
been the easy task. Planning for the couple's life afterward is more
challenging.
Shalom's mother, Bina,
is well aware of what she now faces. His and Ronit's welfare will,
no doubt, always remain a source of concern. "Shalom knows that all
these years I didn't want him to get married," she relates, turning
to him for agreement.
"He's a pleasant, easy
boy, not problematic, and I like having him at home. But he wanted
to marry because he is searching for a partner like everyone else,
and I understood that the right thing is to let him marry and
develop."
The families have only
roughly outlined the couple's living arrangements. Shalom and Ronit
will remain at their current jobs - she as a photocopier at a
primary school for learning disabled children in Jerusalem's Romema
neighborhood, and he in paper recycling at the Givat Shaul offices
of the Ministry of Education. The parents are looking for a rental
apartment near Shalom's parents.
Ronit has lived in an
Alei Siach sheltered home for the past 15 years. She and Shalom will
be the third married couple among the 360 Jerusalemites who are
assisted by the organization's network of hostels, workshops and
clubhouses.
Chana Bransdorfer,
spokeswoman for Alei Siach, says that Ronit attended weekly therapy
sessions for several years. It was there that the idea of marriage
arose and then took root. The sessions primed her for the
undertaking, along with her family's support and in consultation
with outside professionals.
All residences and
activities sponsored by Alei Siach are gender-segregated, so Ronit
never met boys there. The other Alei Siach couples were arranged
through matchmakers, in accordance with haredi protocol. Marriage is
clearly a goal that Alei Siach champions for those of its charges
who are capable of it.
SHALOM NAMES three
married Down's friends, and his mother adds two more couples she
knows who live together. Yet, Rivka Sneh, a founder and director of
Yated, the nonprofit serving 1,500 families of Down's children
around the country, paints a bleak picture of marital opportunities.
She says that despite impressive strides in the areas of education,
employment and community living, progress in this area has been
minimal - it is the last frontier.
In an effort to conquer
it, Sneh lectures throughout the country about the sexual and
marital needs of Down's adults. According to her records, there are
only five married couples in the country. A sixth has been engaged
for more than a year and is awaiting subsidized marital quarters
from the Ministry of Welfare and Social Services. They will become
available, she says, once another couple materializes to join them
in a sheltered apartment. Only parents with the finances to rent
their children an apartment can sidestep this obstacle.
Sneh argues that
acknowledging the right of Down's adults to form relationships and
marry is not enough. Most of them need to be taught how to socialize
with the opposite sex. Currently there is one national center in Tel
Aviv that provides counseling and instruction in forming
relationships. Local branches exist in Haifa, Afula and Beersheba,
and a new one will soon open in Jerusalem. Through various exercises
such as psychodrama, participants acquire social skills that include
making eye contact, initiating conversation, asking appropriate
questions and listening attentively. Sneh claims that these few
centers do not meet the needs of all.
Sneh, who knows Shalom,
emphasizes that he is unique: He never needed any such guidance. In
fact he tells us that he has many friends and even a string of past
girlfriends, the first of whom he met in primary school. Since then
he has enjoyed several other relationships. His mother explains, "He
was always warm, giving, knew how to dote on others and how to give
love." Shalom adds, "And how to give respect."
Shalom radiates an
enviable inner peace. Sneh points out that many Down's individuals
are denied that by dint of their sexual frustration. They are
rendered so tense, restless and even aggressive that caregivers
frequently administer medication just to calm them down. Sixty
percent of those institutionalized and 40% of those in
community-based residences receive psychiatric drugs. Sneh says that
according to the chief psychiatrist of the Welfare and Social
Services Ministry, only 10% of that sector have conditions that
actually require such treatment.
The promotion of sexual
and marital relations may be appropriate for Down's adults. However
its suitability for the general mentally disabled population is
hotly disputed.
Dr. Chaya Aminadav,
director of the Department of Services for the Mentally Disabled at
the Ministry of Welfare and Social Services, does not consider
marriage to be ideal for most of the mentally disabled. Down's
individuals are unique in their desire and ability to remain devoted
and monogamous, she insists. However, those who are mentally
disabled as a result of other genetic syndromes or from brain
injuries are less likely to remain loyal to their partners. Often,
she adds, after such a couple has been settled in a residence with a
second couple, they swap mates.
This is one reason that
Aminadav's department does not advocate sexual partnership and
marriage. Socializing between the genders, on the other hand, is
actively fostered. Aminadav maintains that what most mentally
disabled adults crave is the sense of belonging and togetherness
provided by intimate relationships. More often than not, the sexual
need is secondary or minimal.
The ministry's attitude
explains why Shekel, a nonprofit organization assisting the mentally
disabled sector with sheltered housing, employment and recreational
activities, cites only one married couple among the 200 residents
living in 55 sheltered homes.
Ofer Dahari, clinical
psychologist and director of the organization's residences, notes
that only couples authorized by the ministry can be provided private
accommodation by Shekel. Applications for such authorization are
submitted by the couple, their families or advocacy groups such as
Bizchut, the Israel Human Rights Center for people with
disabilities.
With a mixed population
that includes Jewish, Arab, religious and secular, Dahari says that
Shekel faces some unique challenges. The attitudes of families run
the full gamut of possibilities: Haredi and Arab families forbid
their children to socialize with the opposite sex. Arab women are
even in danger of physical attack by irate relatives if they are
found to have done so. At the opposite extreme, some secular
families approve of extramarital sexual contact, as does the Shekel
administration, provided the couples themselves have expressed that
desire. Unmarried but sexually active couples at Shekel are not
uncommon.
Numerous secular
parents, on the other hand, still discourage physical contact
between the sexes. According to Yated's Sneh, the fact that sexual
predators often target disabled females can prompt parents and
counselors to warn them against any contact with males. The upshot
is that the young women eschew even wholesome relationships with
their male colleagues.
HAD SHALOM and Ronit
begun dating a few years ago, they would have encountered yet
another, distinctly Jewish, hurdle. Until recently many rabbis,
particularly the haredi ones, opposed marriages involving people
with Down's. They relied on the Jewish prohibition of marriage among
shotim (the cognitively disabled).
One of the bases for
that was the fact that halachic marital relations are subject to an
involved set of restrictions known as the laws of family purity.
They prohibit sexual relations during menstruation and for several
days afterward. It was presumed by most rabbinical authorities that
Down's adults are incapable of learning and adhering to those laws.
Yet several respected
religious authorities, both modern Orthodox and haredi, have now
reversed that ruling. They determined that if the laws of family
purity are imparted to the couple beforehand and advisers thereafter
assist them in their application, then marriage is not only
permissible but desirable. (Shalom and Ronit attended separate
private classes to learn these laws.) The other earlier objections
to marriage were also dismissed. Nevertheless, there is still no
clear halachic position accepted by all Orthodox authorities.
Childbearing is an
issue that Shalom's and Ronit's parents have resolved unequivocally.
"Shalom understands that they can't have children because of the
heavy responsibility involved," Bina says. "I'm not capable of doing
that," Shalom confirms. He recalls a Yediot Aharonot article
about Ronit which noted that the rabbis forbade her to bear
children. "They advised her not to," his mother gently corrects.
Either way, the rabbis'
words obviously carry weight for Shalom, who, like his fiancיe,
is religiously observant. He has attended synagogue services
regularly since childhood and still leads several Shabbat prayers.
"Everyone is enthusiastic about my cantorial singing," he exudes.
Aminadav says that
child-rearing usually exceeds the capabilities of this population.
Beyond the enormous demands involved, the addition of a child often
dramatically upsets the equilibrium of the couple's relationship.
Many neglect their spouse in favor of the baby and jealousy ensues.
Most parents, like
those of Shalom and Ronit, sensitively convey to their children that
reproduction is not an option. But Aminadav warns that this can be a
heart-wrenching task. She recalls several Down's women whom she met
at a recent conference: "Tears streamed down their faces while they
told me of their yearning to have children." Even Ronit was quoted
in the newspaper article that Shalom referred to as saying, "I want
to be a bride like everyone else and maybe afterward even a mother
of children."
The women need to be
presented with satisfying alternatives, Aminadav stresses.
Shalom's mother
overcame what she considered a "selfish" preference to keep him at
home to support his decision to marry. But at the opposite end of
the spectrum are parents who push their special-needs offspring to
the huppa. While it is unwise, it is nonetheless
understandable. They have suffered as their children failed to
attain one normal milestone after another: high-school
matriculation, army service, higher education, a profession.
Marrying them off consoles these parents to some degree. Aminadav
calls it "a closing of the circle."
Unfortunately, some
parents are so determined that they go so far as to match their
daughters up with a much older, physically disabled, mentally ill or
even abusive man. Aminadav says that her office endeavors to prevent
such marriages.
For some marriage-eager
parents, grandchildren are an additional aspiration, Aminadav
relates. They expect the arrival of a normal grandchild to alleviate
the pain of having a disabled child.
At times these parents
are so determined that they bring their children to fertility
clinics. (Fertility is particularly low among Down's women.) The
doctors, aware that disabled patients are ill-equipped physically
and emotionally for the rigors of fertility treatment, often turn to
Aminadav for guidance. Needless to say, she discourages it.
RONIT SAT serenely like
any Jewish bride before her huppa, clad in a magnificent white gown
and ensconced on a platform in a throne-like chair. But few of the
female guests milling about approached to wish her the customary "mazal
tov." Not even the young women and children who sang and clapped
around the platform overcame their reticence. All the trappings of a
traditional Jewish wedding could not disguise the fact that this one
was unusual.
Yet Ronit appeared
unfazed and intently read from a decorated card the traditional
bride's prayer. She seemed blessed with the same inner peace that
her groom exhibits.
When Ronit's father,
who served as the officiating rabbi, addressed the couple under the
huppa he stressed the uniqueness of this wedding. "While one is
obligated to thank the Lord for all blessings," he said, "this
particular shidduch deserves a special thanksgiving."
Whenever he instructed
the couple regarding ritual, he did so in a manner they could
understand. "Not the entire hand, just this finger," he reminded
Ronit gently as Shalom reached over with the wedding ring. "Very
nice, very nice," he praised Shalom after he read perfectly the
biblical phrase that grooms recite.
Perhaps one day a
"special" wedding such as this one will be routine. The ministry's
reservations about special-needs marriages are undoubtedly valid for
some individuals. But when, as for Shalom and Ronit, marriage is
clearly in their best interests, it would be cruel to impede it.
Despite the enactment
of several laws and international treaties guaranteeing equal rights
to Israel's disabled, the right to marry is not mentioned explicitly
anywhere. As in the religious domain, much legislative work remains.
Today the pioneering
couple live independently in an apartment in Kiryat Moshe, a
15-minute drive from Shalom's parents. Tali Biton, coordinator of
the group apartment where Ronit formerly lived, says that the couple
will be visited regularly by two Alei Siach counselors and will also
attend a weekly marriage therapy session. Funding for the rental fee
is expected to be provided by the Department of Rehabilitation of
the Ministry of Welfare and Social Services. That office has been
responsible for Ronit's benefits and is sympathetic toward
special-needs marriages.
Two Down's children
attended Ronit and Shalom's wedding and watched the ceremony raptly.
Before the huppa, the elder of the two, a 12-year-old girl, sweetly
serenaded Ronit to the accompaniment of a clarinet and a saxophone.
Facing the bride, she stood erect and poised and sang confidently.
Was she perhaps imagining herself marrying some day? If so, she had
Ronit and Shalom to thank for helping to make that a realistic wish.
The
names of the couple and their family members have been changed to
protect their identity.
This
article can also be read at
http://www.jpost.com
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