Normal life is still hard for the mentally disabled, but new singles club is step in right direction.
By GAIL LICHTMANmentally disabled 224.88(photo credit: Courtesy)
On a rainy night last month, about 20 single men and women gathered in the Greater Baka Community Center to meet and discuss issues of dating and relationships. What made this seemingly unextraordinary gathering different was its target audience: twenty- and thirty-somethings with Down syndrome and other mental disabilities.
Started two months ago by Tzamid (the Hebrew acronym for special needs), a unit in the municipal Social Department, in cooperation with the Greater Baka Community Council and with funding from the New Jerusalem Foundation, the club, which meets every other Tuesday, is the first municipal framework in Israel for facilitating social encounters among mentally disabled young adults.
"This club was set up out of a deep belief that those with special needs have the right to full and satisfying lives in the community, including the possibility of creating connections with the opposite sex," says Sara Salman, director of Tzamid, which provides leisure and cultural activities to both children and adults in 14 branches throughout Jerusalem, including in the Arab and haredi sectors. "We want to help special needs persons integrate and lead full lives."
Led by a trained group leader, the club broaches such topics as couples' communication, love, how to initiate contact and how to end relationships.
"We are trying to give those in the club the tools to both build and end relationships," explains Shlomit Phillips, coordinator of special-needs in the Greater Baka Community Council. "This population has special difficulties in connecting and creating relationships. The club will help lessen their embarrassment. We use all kinds of exercises, games, role-playing, psychodrama and discussions to help them learn about relationships. But it is a long process."
Members, who range in age from 18 to about 35, come from all over Jerusalem. Potential candidates are screened for suitability.
Every meeting starts off with coffee and light refreshments and a chance to mingle freely. Then the members gather with the group leader.
ON THE night In Jerusalem attended, one member, N., started to talk about his desire to go out with another member, R., who lives in the same hostel as he does. R. explained to him that she already had a boyfriend and that she would be happy for them to be "just friends" but didn't want N. hugging or kissing her.
"But your boyfriend has been sick and cannot take you out," N. interjected. "You can go out with me and be my girlfriend."
Group leader Odel Malka patiently pointed out that even though R.'s boyfriend was sick, he was still her boyfriend. "What would you do if R. was your girlfriend and was going out with someone else?" she asked him.
N. remained silent but J. piped up: "I would feel bad."
And Y. added: "I would be afraid she was cheating on me."
N. still refused to accept R.'s refusal to be his girlfriend.
"So what do we do with disappointments?" Malka queried the group.
"We need to go on and look for someone else," B. replied.
"To be a couple, you need the consent of both parties, not just one," Malka explained. "There are two in a relationship and you have to check what the other person thinks."
Finally, N. grudgingly admitted that "maybe I need to take the love in my heart and give it to someone else."
"What is revolutionary about this club is that it deals with subjects that were once thought of as taboo for those with special needs - love, sexuality and intimacy," says Phillips. "Ten years ago, we could never have opened a club like this. The whole concept of disability has moved forward. Once, providing hostels and jobs was thought of as enough. Society has opened up to those who are different. Today, the belief is that everyone has the right to relationships and to live as full a life as possible."
Indeed, the concept of special-needs populations has improved. For the greater part of the 20th century, compulsory sterilization to prevent reproduction of those considered to be "defective" was carried out in a number of countries, primarily the US, Canada and Sweden. The principal targets of these policies were the mentally disabled and mentally ill.
In the landmark 1927 decision Buck vs. Bell, the US Supreme Court upheld the right of the State of Virginia to forcibly sterilize patients in a home for the mentally disabled. Justice Oliver Wendell Holmes Jr., writing for the majority, justified this "for the protection and health of the state."
After World War II, public opinion turned against compulsory sterilization in the light of Nazi atrocities. But between 1900 and when the last operation was performed in Oregon in 1981, more than 64,000 persons had undergone forced sterilization in the US.
Clara Feldman, executive director of Shekel, a Jerusalem-based non-profit that helps persons with disabilities live, work and participate in activities in the community, recalls the changes she has seen since the organization was founded in 1979.
"We were a pioneer in adopting the social welfare and rehabilitation polices and community support systems that preclude institutionalization," explains Feldman, who received the 2007 Jerusalem Foundation Prize for her outstanding contributions to the welfare of the capital's disabled residents.
"The last two decades have seen significant changes in the concept of what services are needed for persons with special needs. Until 20 years ago, those with mental disabilities were sent to institutions or kept at home and sent to special education. But there were no solutions for them after they reached 21 and they were generally sent to institutions," she continues. "The concept that special-needs persons have the right to live in the community has involved an educational process for the public, a change of government policy and a rethinking on the part of the parents to see that the community is the natural place for all people.
"The disabled are no different from anyone else," she says. "They have the same dreams and the same desires to realize their potential. We have to enable them to do so. Otherwise, they will not be really living. Rather, life will just pass them by. An enlightened society wants to give its citizens the ability to live their lives to the fullest."
She notes that 15 years ago, when Shekel opened its first group home, the neighbors objected. "Now, no one says anything. People have learned to accept the disabled and see them as people too," Feldman says. "But the more services develop and the more the disabled can live like everyone else, the more their desires and needs will expand. Relationships are very important. Just because the mentally disabled need guidance in developing and sustaining relationships doesn't mean we should prevent them."
"CHROMOSOMES SHOULD not have the last word," says Prof. Reuven Feuerstein, chairman and founder of the International Center for the Enhancement of Learning Potential (ICELP), a non-profit organization that plays a crucial role in helping the intellectually and emotionally challenged maximize their potential and develop into independent, contributing members of society.
"Since the life of every Israeli is composed of education, military service, a job and family life, the lives of these young people should follow the same pattern."
In the course of more than half a century, Feuerstein, who is now well over 80, has revolutionized the way society views and treats those with Down syndrome and other mental disabilities.
Internationally recognized for his theoretical and applied contributions in educational psychology and a winner of the Israel Prize in Education, Feuerstein developed the theory of structural cognitive modifiability. The theory maintains that any person, irrespective of what made him low-functioning, the age at which intervention starts and the severity of his condition, can be modified and brought to a higher level.
Working with the late Yael Minsker, who was known as "the mother of the Down syndrome child," Feuerstein developed educational and job training programs for those with Down syndrome, as well as a voluntary army program whereby they serve in the IDF.
"We develop our youngsters in terms of speech, feelings, cognitive processes, interactions with others, skills in living with others, job skills and even army service," Feuerstein explains. "They are aware of the needs of others. To see all this end in life in a hostel is a disaster. We work to bring them to a higher level of functioning - to be made ready to give and be a partner and then force them to live in a sterile hostel as isolated individuals.
"I feel I have done very little for them if everything I have accomplished does not enable our youngsters to marry and create conditions for living in a nuclear family where they can share love and friendship," he continues. "They have a right to a life with a sense of meaning. The nuclear family could be the greatest source of happiness for these people.
"When the mother of a Down syndrome child first comes to see me, she is very concerned," Feuerstein says. "One of her concerns is that her child will spend his adult life in a hostel - in a non-meaningful environment. It makes her feel her child will not lead a happy life. I try to give this mother the possibility for her child to lead a normative life. I always end by asking her to invite me to the huppa. Most mothers start to cry and say, 'Why do you say this?' I explain that I never say anything I do not believe in. I then tell her that she must prepare her child to be part of a nuclear family with support. Everything this parent does must be so that it will be possible for her child to live his life as part of a nuclear family."
Over the past 12 years, 16 of Feuerstein's alumni, all with Down syndrome, have married and "there hasn't been one divorce," he notes.
Not content with this achievement, Feuerstein is now in the process of establishing within ICELP an institute for the development of marital relations.
"We want this institute to be a paradigm of how to prepare young people for marriage. We want to study and develop methodologies to bring those with Down syndrome and other mental disabilities to the state where they are able to create a nuclear family and live in the most appropriate way in the community. And we want to train others to use the methods we develop - to teach the world how to prepare these youngsters for living in a nuclear family," Feuerstein explains.
ICELP is now in the process of forming a staff and appropriate tools for the program. It is also planning to create a community of young married special-needs couples who will live together, each one in their own apartment, within a complex of 10 to 12 apartments. These couples will receive support and direction on how to maintain a nuclear family and organize their lives, from budgeting to shopping to preparing food.
"We want to create the proper conditions and after say two or three years, they will be able to move out into the community to live independently with a support system," says Feuerstein.
But marriage raises the issue of children. While Feldman supports marriage, she did not want to talk about children.
Salman also said that her unit was "not working in the direction of children. We just want to give them the opportunity not to be alone, to have a partner with whom they can have a life."
Feuerstein, while admitting that children are a problem, "one we are discussing," does not oppose, per se, the mentally disabled having them. "We intend to include the rabbinate, psychologists, physicians, etc. on an advisory board, which will decide how to shape the intervention process needed. I am ready to help those with mental disabilities to learn how to care for a child. I think they can be as intelligent a parent as they need to be," he says.
"Remember, the goal is integration and inclusion into the environment in which they live," he explains. "We need to shape the world in God's image, not just the human being but also the society. For this I have been called a pathological optimist."
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