Shalom and Ronit head to the huppa
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 fiancée 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 fiancée, 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.
