The New Idea

In Egyptian society, as in many societies, brain and genetic disorders are not well understood by the public. People who have, for example, autism or a severe learning disability are shunned, pushed to society's margins, and written off as burdensome to families and society. Faulty public perception, shaped by ignorance and misunderstanding, is the condemning factor that underlies all others. Dina, the mother of a five-year-old with Down's syndrome, sees that to change attitudes and pave the way for societal reform, children are the place to start. In fact, the early preschool years offer an especially promising opportunity to realize important advances in societal integration by setting a different expectation of normalcy early on. This insight has led to the first of what Dina hopes will be a regional network of preschools that prioritize the integration of children with special needs and children without them. Now in its third year, the inaugural school offers a stimulating environment for all children to learn together, play together, and develop friendships. Furthermore, the adults in the picture–teachers and parents–learn to see special needs in a far more tolerant light. Having demonstrated success with her first school, Dina plans to introduce school-based integration of children with special needs throughout the Middle East and, with other parents and supporters, influence public policy and opinion through advocacy and education.

The Problem

According to the Information Center of the Egyptian Cabinet, roughly two million Egyptians are disabled or have special needs. Of these, half are children. Many believe these estimates are conservative; the actual figures, some contend, are double. According to the cabinet's report, governmental and nongovernmental services reach only about 1 percent of children and adults with special needs. The rest–the vast majority–are dismissed, assumed to be incapable of learning, achieving, or leading independent lives. Parents hide such children away and feel shamed and isolated.

Dina believes that even the 1 percent who get help do not receive the right kind. It is true that dozens of charity groups focus on disabilities, but these efforts fail to provide the things most desperately needed–straightforward information about disorders and impairments, their causes, and their treatments; support to parents; training to teachers, doctors, and other adults; and the best possible early learning environments for children with special needs. Misunderstanding, fear, pity–these sentiments, born of ignorance and linked to age-old assumptions about ability, normalcy, and human potential persist, and no one has figured out an effective approach to changing them.

Furthermore, Egypt lacks a successful inclusion model. Nowhere can children with and without special needs meet on equal footing, in a place intended for both equally. Children with special needs attend special-needs schools where they are pampered rather than taught to care for themselves. Lifelong dependency, even in simple tasks like feeding or dressing, is the result. Egyptian law disallows school-based inclusion of children with special needs in the classroom, and teachers are not equipped with the requisite understanding to be helpful. Doctors, too, lack the understanding they need to prepare parents to help their children learn. Everyone involved needs education and information and exposure.

The Strategy

Underlying Dina's strategy is her belief that every child should be given the chance to learn and excel to the best of his abilities. Early childhood development studies suggest that the very early years are critical to growth and learning; Dina's effort is therefore intended to reach preschool-aged children as the primary beneficiaries. Further, she sees that the best way to begin a change process is to introduce the desired change as part of something bigger. For Dina and her goal, this means focusing broadly on education rather than narrowly on special needs. In Dina's pilot effort, her Cairo preschool, the focus is on excellence in learning–for everyone, children with and without special needs. But in every class, at least one special-needs child is learning and interacting with her normal peers.

Dina sees that teachers are the foundation for success and change. She carefully selects bright teachers with good hearts to work with all children in ways that are fitted to their level of ability. She offers specialized training to these teachers and cooperates with a Canadian specialist in school-based inclusion who flies in each quarter to conduct refresher courses for seasoned staff and introductory classes for new staff. Dina sees that teachers are the school's most valuable asset and an important part of her spread strategy. After all, she is training those who will be among Egypt's pioneers in school-based inclusion. She sees that even staff departures offer an opportunity to spread training and understanding, as teachers who leave are likely to end up in other schools. She is especially inspired to see teachers at the school transformed by their experiences in ways that allow them to take on a stance of advocacy for school-based inclusion.

Parents are another critical target group. For parents of children with special needs, Dina offers information that is accessible and relevant to their child's needs. She advises couples to educate others in the family, doctors, neighbors, and anyone who interacts with their child on a regular basis. In many cases, this means translating into Arabic information that is widely available in English and other languages. Dina also offers scholarships to children with special needs. Furthermore, she is very open about her and her husband's struggle to find the best opportunities for Ali, their son, and about the emotional and practical challenges they, as parents, have encountered. In this way, she draws parents into an informal support group that extends to parents of children who do not attend her school.

Dina's approach to the parents of normal students is somewhat different. For the most part, these parents are drawn to the school not because they support her inclusion model or even because they know very much about special needs. They come because the quality of education for all children is excellent, and the facilities and learning aids are top-notch. Occasionally, parents confront Dina about the appropriateness of having a child with special needs in the same classroom with other children. Her response is firm and unapologetic: inclusion is the rule at her school, and it is entirely normal and appropriate. A few parents have disagreed and enrolled their children elsewhere. But most accept the approach, reluctantly at first. Then they begin to learn, and the learning process, Dina notes, can result in dramatic changes in attitude. Through routine parent meetings, informal interactions, and professional monthly newsletters, she quietly builds a group of supporters who will be instrumental in society-wide reform.

Envisioned from the outset as a pilot program, Dina's school now works well. She has built a solid team of 70–half of whom are trained teachers, the other half administrative and cleaning staff. The school's first three years have produced 500 "graduates" who have enrolled in many schools throughout the city, taking their preschool experiences and introduction to inclusion with them. Dina has helped each of the special needs children find programs appropriate for them–some in mainstream classrooms. She is satisfied that she is on the right track toward achieving lasting change and is now ready to focus more broadly. Her five-year plan includes starting at least three more preschools in Egypt and one in a neighboring country. Farther down the road, she sees one preschool in every major city in the Arab world. Working with other parents and supporters, and armed with the success of her first effort, she plans to approach the Ministry of Education to advocate for inclusion in public schools and offer advanced and continuous training to teachers, using the techniques, curriculum, and expertise she has developed.

The Person

A Cairo native, Dina grew up in an upper-middle-class family. Her family provided her with an excellent education–French Lycée school, Sacre Coeur, American University of Cairo–and instilled in her a sense of social responsibility. In 1992, while a university student, she formed the Environmental Awareness Association, a student group she initially chaired. Dina's interests in politics and economics led her to pursue work experiences with the United National Development Program, Save the Children, and other development groups, from which she gained broad exposure to development in the Middle East, and to tools like microcredit.

In 1995 Dina married and, two years later, delivered her first child, Ali. Initially, things seemed entirely normal. But when Ali was thee months old, he got sick and a doctor who was not the boy's routine doctor examined him. Dina watched the doctor examine her child–he looked carefully at Ali's ears and palms and head–and she realized that something was wrong, something she and her husband had not been told. She asked, then demanded, that the doctor tell her what was wrong. She learned that Ali had Down's syndrome.

In the months that followed, she and her husband frantically searched for help and information. Dina learned that scant information and no quality services were available in Egypt. Most disturbing was the attitude of doctors and other specialists. When she asked Ali's doctor for help in identifying schools for him, the young, progressive doctor responded, "Why bother? He is a mental retard."

Dina persisted; she wanted the very best for Ali, and understood after quickly exhausting the possibilities at home that she would need to look for solutions abroad. She and Ali traveled to France and to the United States for tests and development skills assessments. During this period, she learned of practices, treatments, and educational opportunities available in other settings to children with Down's syndrome. The difference between the opportunities she saw abroad and what she knew to exist at home shocked her.

Back in Egypt, Dina and her husband worried that Ali was growing too attached to them to the detriment of his social development. They decided to enroll him in school to give him a chance to play with other kids. They discovered that Egyptian law disallows integration of special needs children with their normal peers in school; nonetheless, they continued to look for possibilities, and in the process, they talked to many teachers. After an exhaustive search, they found a daycare that opened its doors to him. The teachers adored Ali and showered him with affection, but Dina saw that the result was damaging: in their care, he was becoming a dependent. She wanted something different and better for Ali. In fact, she wanted something different and better for all children with special needs, and this something included opportunities for inclusion and learning and a tolerant, informed public.

Ali is now almost six. He goes to school at New Cairo British International School, which is–thanks to him–experimenting with inclusion. Dina sees that he is happy and challenged and doing well. She says that Ali is the joy of her life. Poised, articulate, determined, Dina is a powerful model for other mothers and fathers of children with special needs.