"Mibidul leshiluv: hitmodedut im mugbalut bakehila" ("From Segregation to Inclusion: People with Disabilities in the Community") edited by Meir Hovav and Pesach Gitelman, Carmel and Beit Issie Shapiro-Amutat Avi, 418 pages + 23 pages of English abstracts, NIS 94

Over 30 years have gone by since the birth in a Jerusalem hospital of a tiny baby girl, the first child of a very young Haredi couple from the ultra-Orthodox neighborhood of Mea Shearim. There were few prenatal testing options in those days, and even if such testing had been available, it is doubtful that this couple would have taken advantage of it. Shortly before the birth, the baby was found to have a defect that would affect her physical and mental development. In those days, they called it "retarded."

A few days after the birth, the mother left the hospital. The newborn stayed behind in her crib. The nurses fed her, changed her diapers and bathed her. Sometimes one of them would pick her up, cuddle her for a minute and put her back down, to endure more hours of loneliness. As a young social work student at that hospital, I was sent to the parents - to get to know them, establish contact, offer support and, most of all, encourage them to develop a relationship with their baby, who didn't even have a name, and to take her home with them. I looked forward to awakening their sense of parental responsibility, and tapping into the maternal and paternal love in their hearts.

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I set off for Mea Shearim dressed in a skirt and a long-sleeved blouse. In their tiny, cramped apartment I met two pale and frightened young people. Every time I walked in, the father got up and left the house, unprepared to talk with me. The mother, wan and brokenhearted, mumbled a few words, shed a few tears and asked me to stop coming. The baby remained in the hospital. I have no idea what happened to her.

The memory of that baby girl came back to me as I read the fascinating article by Dr. Hefziba Lifshitz and Dr. Rivka Glaubman in "From Segregation to Inclusion," a collection of essays on coping with mental disability in the community. Lifshitz and Glaubman explore how the attitude toward the special-needs individual has changed in Haredi society. They describe a transition from the "stigma effect" to the "adaptation effect."

In the traditional view, developmental disability is a birth defect that nothing can change. Hence, there is the feeling that very little benefit can come from outside intervention. The implications for the rest of the family (such as the harm it can do to the marriage prospects of other family members) are so grave that the best way to cope is by concealing the problem and not seeking specialized help, in minor cases, or, if the disability is severe, by sending the special-needs child away to a boarding school or other institution.

The "adaptation effect," on the other hand, involves recognizing the special needs of developmentally disabled youngsters and their families. This recognition takes the form of establishing appropriate educational frameworks that combine attention to the particular needs of each child while preserving a Haredi lifestyle and family support. In this way, the modern-day principles of normalization, integration and quality of life can also be applied to those with special needs in this society. The transition to this new approach was made possible when rabbis and community leaders agreed to be "agents of change" and to use their influence as spiritual authorities to create greater acceptance of special-needs individuals.

In the 1970s, the health and welfare system did not recognize the problem of being different or having special needs in Haredi society. We failed to understand how their background could ffect the response of shocked parents to the birth of a child with disabilities. We did not offer intervention methods that fit in with their world, and their system of values and beliefs. We did not call upon the larger community and the extended family to help them in their distress. I would like to believe that today we would operate differently.

I remember visiting the building that was being converted into the first school for special education in the Haredi sector, in the late 1980s, in the course of my professional duties. This school sprang from the initiative of leaders within the community, and won the support of the rabbis. It was the first sign of change.

Family project

But the change in attitude to those with special needs is not restricted to the Haredi community; it extends to society as a whole. This change is discussed in other articles, such as Dina Feldman's analysis of how a law mandating equality for disabled individuals would promote the rights of the mentally disabled, and Meir Hovav and Haya Aminadav's piece on the history of the Ministry of Labor and Social Welfare's policies with respect to individuals with developmental disabilities.

"From Segregation to Inclusion" was published on the occasion of the 25th anniversary of Beit Issie Shapiro. This local nonprofit community organization provides a variety of up-to-date services and treatments to the developmentally disabled and their families. Beit Issie was established in memory of Issie Shapiro of South Africa, who worked to promote the welfare of special-needs children. Over the years, the Shapiro family has continued its involvement in the operational aspects and development of Beit Issie (see the article by Israel Sykes and Naomi Stuchiner, the latter Issie Shapiro's daughter and the managing director of Beit Issie for the last 24 years).

It should be noted that most of the articles in the book are about coping with the situation of developmental disabilities, even if this is not stated in its title or subtitle. The subtitle of the book does not make this clear. This vagueness is not insignificant, considering the fact that there are critical differences between physical and cognitive disabilities.

The book opens with a tribute to Shapiro, a short introduction and a list of contributors. The rest is divided into three sections. The first section contains two articles on legislation and policy, followed by a section consisting of six articles on different aspects of coping with disabilities and the disabled in Israel. Most of the contributions in this section focus on developmentally disabled children. Written by educators and people who work in the helping professions (especially social work), these articles form an intriguing mosaic of insights on attitudes toward these children and their families at different stages of life, as well as in the community, in the family home, and when the time comes for placement in a hostel or institution.

The third section revolves chiefly around the professional activities of Beit Issie Shapiro, which go beyond dealing directly with the children and their families. The organization also initiates training courses for social workers and teachers, influences legislation and contributes to the discourse on the operation of nonprofit associations. All of the articles are academically sound, and have a wide range of sources to back them up.

Rich anthology

So we are talking about a rich anthology offering a diverse collection of articles on educational, organizational and therapeutic subjects, reflecting the authors' deep commitment to the welfare of children with developmental disabilities and their families. This commitment has spurred them to become involved in program development, policymaking and legislation that support the integration of special-needs individuals in the community.

Commitment to integration reflects a worldview in which a person with developmental disabilities is a full-fledged human being who is capable, among other things, of making decisions, setting goals and acting on his or her own behalf. This approach obligates society as a whole, and those responsible for the care of a developmentally disabled child or adult, to stop patronizing and adopting a know-it-all attitude. The abilities of each individual must be assessed, and a personal program built for each one. The aim is to enhance these personal capabilities and turn them into a tool for bettering the lives of people with developmental disabilities. What this means is protecting their privacy, respecting them as human beings, encouraging independence, helping them express themselves and reach their goals, and allowing them to live as normal a life as possible.

Once we are on the subject of commitment, however, I would draw attention to the editors' admission that their book does not address the feelings of special-needs individuals on inclusion, the difficulties they face in the inclusion process, and their need to spend part of their lives in the company of others with similar disabilities. Indeed, that is a major drawback. Everyone talks about equality, opportunity, freedom of choice, dignity and self-fulfillment. But how do the people involved feel about this?

In her article, Dina Feldman allows us to hear one voice - that of A.M., the first person to represent the developmentally disabled on the advisory committee to Israel's commission on equality for disabled people. A.M. describes his life and his achievements, and talks about his desire to enjoy such normative aspects of life as holding a job, going on trips and having a social life. "The most important thing is to be healthier and more independent," he says. "To walk around by ourselves and not always be dependent on other people."

What is missing in this book are the feelings, thoughts and opinions of large numbers of young people and adults, who despite their disabilities, envision a world rich with opportunity and are capable of articulating their desires. Their voice might have added another dimension to the professional writing here, and transformed the rhetoric about human dignity into something profound, sincere and emanating from the heart.

Though the book is in the main directed at the professional community, people involved in the education and care of developmentally disabled and disabled individuals in general, parents and family members will also find this book interesting and useful, in spite of the professional terminology. Creating a forum that is relevant to both professionals and recipients of these services is almost an impossible mission, but this book does offer some articles that may be appreciated by the general public.

As a diverse and professional collection of articles on a sensitive subject, "From Segregation to Inclusion" offers a genuine contribution. "Talking about it" is an important part of the process, paving the way for action and progress. We can only hope that this preoccupation with inclusion not only reflects what has been done, but will help to stimulate further action that focuses on the special-needs individual as a client, and makes it possible for these people to take part in decisions affecting their future, based on respect, identification of strengths and empathy.

My hope is that the next anthology will present the life stories of people with developmental disabilities from their own mouths. When that happens, the idea of enabling them to play an active part in society, be involved in the decisions that affect their lives, and let their voices be heard, will move from theory to practice.

Dorit Eldar-Avidan is a lecturer in the school of social work of the Hebrew University of Jerusalem and the law faculty of the Herzliya Interdisciplinary Center.