Down but not out

A special-needs couple adjusts to marriage as this year brought disheartening news regarding equality for those with disabilities.

By FRIMET ROTH
REUVEN and SHULAMIT down syndrome 311 (photo credit: FRIMET ROTH)
REUVEN and SHULAMIT down syndrome 311
(photo credit: FRIMET ROTH)
This year brought disheartening news regarding equality for those with disabilities.
A survey of 41 major employers revealed that of all classes of job applicants, they are most reluctant to hire the disabled. This exceeded the negativity they harbored toward two other minorities about which they were polled: Arabs and haredim.
But the picture is not entirely bleak.
Reuven and Shulamit are seeing to that.
This 30-something couple greets us at the door of their second-floor walk-up, a tidy, pleasantly furnished apartment in Jerusalem’s Kiryat Moshe neighborhood.
Reuven wears a crocheted kippa and Shulamit covers her hair with a hat.
The dining room table is set with cold and hot drinks and a bowl of fruit.
Reuven’s mother, Hinda, who has accompanied me, makes the introductions.
The scene, mundane by most measures, is no mean feat for Reuven and Shulamit. Both were born with Down syndrome. While 15 to 20 cognitively impaired couples marry here every year, few of them have Down and, due to the opposition of some rabbis, even fewer are religious.
Reuven and Shulamit were the third such couple when they married 15 months ago. Shulamit’s father, a respected rabbi in the National Religious sector, officiated and 500 guests attended the realization of a dream.
“I had a very strong faith that I would get married,” explains Shulamit. “I just believed that this thing would happen, that I would marry.”
Reuven was just as determined: “From age zero.”
And how has it changed them? “I just feel entirely different,” Shulamit effuses. ”Here’s what I tell everyone: Are you familiar with ‘joy of life’? Well, before I was married I always felt it. But from the moment I was told that I’m engaged, my ‘joy of life’ exploded, burst out, engulfed me. It’s real now. It truly opened up for me.”
“I join her in what she says,” says Reuven. “And I know this is real for me, because I know myself very well,” Shulamit adds.
What about couples with disabilities who face parental opposition? “Okay.
So if it’s no, then no.”
She and Reuven were spared that frustration.
They attended the same summer camp as children, went their separate ways and met again decades later at a bus stop. Several enjoyable dates followed.
And as soon as the relationship grew serious, both sets of parents met to plan a wedding.
Could they set an example for others? “Yes. That’s it. Maybe parents will understand things differently then,” says Shulamit.
We meet at night because they both work full-time. Shulamit’s job is photocopying documents for the teachers at a haredi special education school. The pupils there suffer from ADHD and learning disabilities. ”When, say, they haven’t taken their Ritalin they go wild,” she explains. ”They have emotional problems, spiritual problems, you name it.”
Reuven works at the Education Ministry where he greets visitors and empties the paper bins for recycling. Do they enjoy their work? “Yes, thank God,” Shulamit answers, words that punctuate her conversation often.
Have they ever suffered from rudeness or insensitivity? “Actually, no. At work it would never happen because they love us there,” says Shulamit, “Everywhere we go, they love us. Nothing you can do to change that.” Reuven adds: “Also, because they know us.”
He remembers that when he was young, “there was a boy in school who insulted me... I remember his name –” “Don’t mention names. Better not to tell,” Shulamit interjects. “Right. I won’t,” Reuven agrees.
Shulamit, who finishes work earlier than Reuven, shops for groceries, cleans and cooks three times a week with a counselor, Sari, from the haredi organization Alei Siach. Shulamit lived for 15 years in one of its group apartments for the disabled. The organization also provides the two with weekly sessions of professional couples therapy.
“On days when Sari doesn’t come, we cook together according to the menu that is posted for us in the kitchen.”
Reuven’s favorite: “omelets.”
They spend most of their leisure time at home together, except for Reuven’s two extracurricular activities. One is a course in human relations skills offered under the auspices of Beit Izzie Shapira and Alei Siach. He brings a certificate he received upon completion of the first year of Introduction to Practical Psychology – “Now I’m in the second year,” he adds. The other one is a drama club.
(Shulamit explains that for religious reasons, this is an activity she “can’t go to because it’s a mixed group.”
THE DOWN population’s health problems, including heart defects, vision and hearing impairment, obesity, thyroid and other conditions, are now mostly treatable or controllable. Consequently, their average life expectancy has risen to 60, up from 25 in the 1970s and nine at the start of the 20th century. With a desire for intimacy as deep as everyone else’s, the trend toward marriage was a natural progression.
In England, the first wedding of a couple with Down syndrome took place in 2006. In the US, the first such nuptials were recorded in several states during the past decade.
Here, while socializing between the genders is encouraged at government facilities, marriage is not. Chaya Aminadav, director of the Welfare and Social Services Ministry’s Department of Services for the Mentally Disabled, contends that most cognitively impaired adults need warmth, friendship, intimacy but not necessarily long-term relationships or marriage. “The Down syndrome relationships withstand time, but the others tend to swap mates after a while,” she relates, “even with 24-hour supervision at their group apartments.”
So cognitively impaired couples here often opt to pair up casually instead.
But for singles who are either religious Jews or Arabs, this is not an acceptable option. Rabbi Shai Piron, who has written and spoken about the problem, complains that legislation ensuring equal opportunities for the disabled has proven insufficient because the rabbinical courts control marital issues. “Why don’t the lawmakers address the rabbinical courts and request that they draft regulations in regard to marriage of the disabled in general and the cognitively impaired in particular?” He concludes that the matter languishes in a fog that allows for arbitrary decisions and injustice.
Piron emphasizes that many Down adults comprehend the concept of marriage and should no longer be branded “shotim” (idiots), a category that in Jewish law is forbidden to marry. “It appears that nobody in the legal or religious legislative domain is rushing to... settle the matter once and for all.”
Even overseas, however, Down marriages are still rare enough to be intriguing.
This was evidenced two months ago when first-time director Alexandra Codina’s documentary film Monica and David first bowled over the critics and then won the jury award for best documentary of the year in New York City’s Tribeca Film Festival.
The film’s stars, Monica, the director’s cousin, and David are both articulate and capable. Nevertheless, they are closely shielded by their parents, who worry that exposure to society would subject them to stares and ridicule. They do not work, live in an apartment adjoining Monica’s parents and are awakened every morning by her mother, who cooks and serves them their meals.
Shulamit and Reuven trump them hands down. Yet family support does play a role in their routine. Hinda stops by their home regularly. How often? “Well, as you see, she’s here... she doesn’t have specific times,” acknowledges Shulamit, a superb diplomat.
Her mother-in-law is conscious of the delicate dynamic her presence imposes.
Shulamit “freezes when she opens the front door and sees me,” Hinda notes, so she restricts her visits to once monthly.
But when she feels the apartment has not been cleaned to her standards, she comes by to scrub while Reuven and Shulamit are at work. She chose all the furniture with easy maintenance in mind. And while Shulamit and Reuven chatted with me, she consulted their counselor, Sari, about various matters.
“I’ll buy you a potato and onion container tomorrow,” she promises before we leave, “and I’ll also bring you a special brush for cleaning the carpet well.
I’ll show you how to use it.”
But in general she keeps a low profile in their lives, even allowing herself to travel overseas occasionally.
Shulamit’s parents live in a distant town. “They don’t always manage to [visit],” says Shulamit. “They’re busy people....”
Every few weeks, the couple travel on their own by bus to either set of parents to spend Shabbat with them.
Even among married Down syndrome couples, Reuven and Shulamit are unique. Many Down adults whose lives have been filmed or documented are gifted in some way. One is a musician, two are black belts in martial arts, one has mastered and teaches sign language, some have acquired impressive verbal skills and a few have graduated from college.
Reuven and Shulamit, on the other hand, are more typical of their cohorts.
While they have completed 12 years of study (he in a special education school, she in a mainstream haredi school), they have grappled with unmistakable cognitive impairment.
But they are blessed with superb social skills. Before marriage, Reuven was active at his local synagogue, frequently leading the congregation in prayers.
“Everyone loved my hazanut [cantorial singing],” he proudly notes.
Shulamit, while still single, used to address student audiences “to ensure that the normal girls would accept children like me. Basically, that was the essential thing.”
At times Reuven’s speech can be hard for an outsider to understand. When Shulamit senses that is the case, she hastens to repeat what he has said as a translator would, without a trace of condescension. Reuven compensates for his shortcoming with a keen thoughtfulness for his wife. At one point, he goes into the kitchen to make her a cup of coffee. For most of our chat, his arm rests gently on her shoulder and, unless he has something new to contribute, he is content to let her speak on his behalf.
It is a harmony that many nondisabled couples spend years in therapy to master.
Shulamit has tips for troubled couples: “It’s not worth arguing about every little thing. You can’t always argue.”
SHULAMIT AND REUVEN do not take their success for granted. He describes friends who live nearby. The husband does not have Down syndrome, but the wife, who does, “never leaves the house.
She only works in the kitchen, in the house.” And “Yonatan [the husband] tells me that for everything, they involve her mother.”
Reuven contrasts their own marriage: “Any problem, we resolve it by speaking.
We argue and argue. We talk and then we make up.”
Our visit is nearly over and childbearing has not been broached. It is a painful topic for both Down couples and their parents.
According to Chaya Aminadav, the Welfare Ministry is staunchly opposed to childbearing for the cognitively impaired. But the couples’ desire is there. “I have seen many girls shed tears,” concedes Aminadav, “when I have had to inform them that it isn’t recommended.”
Shulamit was eager to become a mother after she became engaged. But she and Reuven were later persuaded that it was not advisable.
Not everyone concurs. Despite their undisputed inability to raise children independently, some activists promote the right of the cognitively impaired, including those with Down, to procreate.
One proponent of that position is Rabbi Rafi Feuerstein, vice chairman of Jerusalem’s International Center for the Enhancement of Learning Potential.
The father of a 21-year-old Down son who he hopes will one day marry and father children, Feuerstein sees nothing negative in the growth of the Down population: some 35 percent to 50% of children born to mothers with Down are likely to have it or other developmental disabilities.
At the other end of the spectrum are efforts to eliminate Down syndrome entirely. In January, researchers in Hong Kong announced the development of a DNA blood test that detects the syndrome in an unborn fetus. Currently, only invasive tests carrying the risk of miscarriage provide definitive results.
Once the new screen reaches the market, even young women, who now make up the majority of mothers giving birth to Down babies, will be able to get tested.
Older and other high-risk women have hitherto been the only ones undergoing invasive tests. The data indicate that on receiving positive results, 90% of them have chosen to abort.
Back at Shulamit and Reuven’s apartment, a photo session follows. After the first few poses standing stiffly side by side, they move to the sofa. There they entwine their hands, lay them in Reuven’s lap and smile. Their message of love is loud and clear.
The writer’s daughter Malki was murdered at 15 in the Sbarro restaurant bombing (2001). She and her husband founded the Malki Foundation, www.kerenmalki.org, which provides concrete support for Israeli families of all faiths who care at home for a special-needs child.