When Down children grow up

Despite medical advancements lengthening lifespans, religious establishment makes it difficult for Israelis with Down syndrome to marry under Jewish law.

October 15, 2011 22:58
Adults  with Down syndrome with Rivka Sneh, Ada Oz

Down syndrome 311 . (photo credit: Judy Siegel-Itzkovich)

Health is “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,” according to the World Health Organization’s official definition. If so, adults with Down syndrome – who have a long list of potential medical problems because of having an extra 21st chromosome – have the right to love, companionship and marriage, if they are able and want it, and to enjoy as normal a life as possible.

British physician John Langdon Down was the first to describe the trisomy 3 syndrome in 1866. It took almost a century more for French pediatrician and geneticist Prof. Jerome Lejeune to discover the cause – having a total of 47 instead of 46 chromosomes. In the mid-20th century, those born with the defect reached their fourth or fifth decade at most. But today, their life expectancy is significantly higher thanks to more advanced knowledge and treatment of medical complications and improved medical imaging. Adults with Down syndrome can live into their 60s or more. So marriage has become a relevant issue.

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One in 800 births results in a Down syndrome baby – most of them traditional or very observant Jewish or Muslim couples who refuse to have an abortion and prefer to raise a less-than-perfect child. There are about 150 Down syndrome babies born here each year. Decades ago, the birth rate used to be twice as high, and many parents abandoned their babies – diagnosed soon after delivery – in obstetric wards for adoption or foster care. Today, thanks to improved education and information and more awareness of the potential of such disabled people, no Down baby is abandoned in Israeli obstetrics wards.

The number of Down births is due to be reduced even more significantly within a year or so when companies begin to market a newly developed blood test for women in their 11th or 12th week of pregnancy that can detect trisomy with 100 percent accuracy; it would be early enough to overcome halachic (Jewish legal) objections to abortion, yet some couples will still want to have the baby.

The extra chromosome – the most common single cause of human birth defects – creates problems with the way the body and brain develop. These include a flattened nose; decreased muscle tone; excess skin at the nape of the neck; separated joints between the bones of the skull, small ears and mouth, upward-slanting eyes, short hands and fingers, shorter average height; a short attention span; possible vision and heart problems and slow physical development and learning; hip problems; under-active thyroid; weight problems and obesity; and difficulty hearing.

Surgery and other treatments, including behavioral therapy, can go far to ameliorate these difficulties.

Emotionally, people with Down may suffer from anger, frustration and compulsive behavior. As teenage girls and women are usually able to get pregnant and both sexes suffer from sexual abuse by strangers, they are taught about sex and pregnancy. But clearly, the difficulties involved in the syndrome don’t mean they do not want and cannot find companionship and love and dream of getting married.

Males with the syndrome are likely to be unable to father babies because of damaged sperm. Given the risk of passing on trisomy 21 to children and the difficulty they would have raising even normal children, couples who want to get married or live together without official recognition need – and receive – counseling from the Welfare and Social Affairs Ministry and voluntary organizations about contraception and couple-hood. Yet abroad, some professionals maintain that children of mildly retarded couples are probably no worse off than children of individuals who are classified as culturally deprived.

Yated (www.yated.org.il), the voluntary association for children and adults with Down syndrome, realized the needs of adults with Down and nine years ago established a special unit to help them. Noga Pazi, who has a degree in special education and psychology, is coordinator of activities for some 120 Down syndrome young adults aged 25 to 32. All the Yated activities are free. Living in Amuka in the Galilee, Pazi coordinates through phone calls, e-mails and personal visits to Down adults around the country. Among members are 50 Arab adults who have the syndrome.

The Jerusalem Post was recently invited by Yated director-general Ada Oz to its first-ever tour of Jerusalem and lunch for seven Down couples from all over – who are living together and/or married by lawyers or by the Conservative and Reform movements in Israel. Unfortunately, with extremely rare exceptions, the Orthodox rabbinical establishment – the official Chief Rabbinate and haredi rabbis – has ignored the issue and refuse to perform weddings of Down syndrome adults.

“Their parents are very positive about them getting married,” said Pazi. One of the first things to enter their minds after being told in the delivery room that the baby has the syndrome is what will happen when he or she grows up and the parents are no longer able to take care of them and show their concern and love. Instead of living with someone they love in an apartment of their own, they would be one of several strangers in a dormitory or other sheltered framework.

“Yated gives Down children and adults all kinds of non-financial support,” said Rivka Sneh, the longtime head of Yated’s Jerusalem branch who herself is the mother of a Down baby who reached adulthood. Yated’s adult activities include organized Shabbat weekends for religious people. As the risk of Down is higher in families, there is family affiliated to Yated with two siblings with trisomy.

Sneh and Oz bemoaned the fact that the religious establishment considers adults with the syndrome as having the status of shoteh or mental disability (developmentally and with serious psychiatric disorders), which means they cannot get married according to Jewish law. Some rabbis won’t even include them in a minyan, the quorum of ten men required for some prayers. Most of the couples, said Oz, wanted to have a traditional Jewish wedding ceremony and official state recognition but they are denied this.

Numerous articles in foreign medical and science journals in recent years have discussed sexuality and Down syndrome. Researchers in the pediatrics department at the University of Iowa Hospitals and Clinics have written that “as human beings, individuals with Down syndrome have the right to emotionally satisfying and culturally appropriate sexual expression. As patients, they have the right to routine reproductive health care provided to the general population. Cognitive and language disabilities may predispose this population to unwanted pregnancy, sexually transmitted disease and sexual exploitation. Sex education tailored to cognitive level, learning style, and living arrangements is essential to the education of children and young adults with Down syndrome.”

The couples here are intelligent enough to live together harmoniously and work for a living, with financial help from the National Insurance Institute as they are recognized as having 100% disability. But despite their successful daily functioning, they are not recognized by the official rabbinate as being mentally capable enough to get married. Some of the people at the Jerusalem event work at a ski site in the Gilboa hills, in a supermarket and other useful jobs. One even writes poetry. Some of them met and fell in love thanks to the Feuerstein Institute (formerly known as the International Center for the Enhancement of Learning Potential or ICELP) in Jerusalem where they underwent training. It is chaired by Prof. Reuven Feuerstein, the world renowned developmental, clinical and cognitive psychologist, Israel Prize winner and candidate for the Nobel prize.

Now 90 years old, Prof. Feuerstein has spent many decades developing and using techniques for promoting the advancement of people with Down based on his theory of intelligence that insists intelligence is “not fixed, but rather modifiable” – that it can be modified through mediated interventions.

The adult activities’ groups choose a chairman and secretary and are actively involved in the away they are run.

They are eligible for interpersonal counseling from the social welfare authorities.

Sagi, 33, and his 30-year-old wife Nitzan are prominent on the Yated Jerusalem tour. Their short stature and innocent bearing makes them seem like children, but they are very much in love and hug each other frequently. They easily answer all questions posed in an interview.

“We first saw each other at my bar mitzva,” recalled Sagi, who proudly wears a simple gold band on her ring finger. The couple live in a sheltered housing facility and are able to go out to work. Since they fell in love, they were no longer doomed to loneliness.

“Sometimes we argue, but we always reach an agreement,” they said. “Arguments add spice to life,” added Nitzan.

Oz said that while the Welfare and Social Affairs Ministry has considerable ongoing involvement in services and support for adults with Down, it should also proactively encourage social encounters and even matchmaking for couples who are interested in getting married.

Prof. Reuven Feuerstein’s son, Dr. Rabbi Rafael Feuerstein, has a 22-year-old son, Elhanan, who was born with Down syndrome. The young man’s father and grandfather have been working with him almost from his birth to advance his development, and they have succeeded as nobody else could have. The kippa-wearing man earned matriculation from a yeshiva high school after being integrated in mainstream schools and is now volunteering in the Israel Defense Forces and aims at a nursing career. Dr.

Rabbi Feuerstein, who is deputy chairman of the Feuerstein Institute and a founder of Tzohar (the voluntary organization of open-minded Orthodox rabbis), very much wants Elhanan to eventually marry.

“We are setting up a national service for preparing Down syndrome couples for marriage and providing ongoing assistance. Nobody knows exactly how many there are and how many want to marry. There are 20,000 Israeli adults with some type of mental disability, and this is a major problem. We intend to provide help with preparing couples for marriage, at the wedding and afterward.”

Dr. Rabbi Feuerstein declared that the halachic problem has to be dealt with by the Chief Rabbinate.

“It is starting to recognize the problem, but it is not organized enough. Many of today’s couples are graduates of the Feuerstein Institute. A public awareness of the abilities of people with the syndrome is needed. We need a public awareness campaign and change the atmosphere to make them think it can be done.”

“Thanks to the institute, the level of the youngsters has been raised. The level of medicine is much improved, and they live longer. Halacha doesn’t talk about Down syndrome but about cognitive and other functioning. It doesn’t designate a person with Down as being a shoteh.

“A normal person who was abandoned as a baby and was raised without human contact by creatures in the forest would be regarded as a shoteh. But there is ignorance among rabbis about what these young people are capable of doing, and indeed, only a handful have been married by Orthodox rabbis here. But even Down couples who wanted to get married by the official rabbinate are unaware that one can find someone who will approve; they just didn’t know and didn’t apply,” said the Feuerstein Institute deputy director.

“Our graduates know about Shabbat, bar mitzva and Rosh Hashana. They have much understanding. As for pregnancy, it is probably not desirable, but the government can’t order them not to get pregnant. And practically, they don’t have to be married to get pregnant.”

Dr. Rabbi Feuerstein concluded: “I want my son to marry when he is ready. I won’t say now whether he should be a father. But he should be able to fall in love and have a wife."

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