In a school art room, 20-year-old Mostafa slips on an apron over his gray sweater. He touches the canvas spread across a table. “Mostafa, want to paint here?” asks his teacher, pointing to the design stencilled on the canvas. She offers green paint; wordlessly, he accepts. Mostafa then glides his brush across the white surface.
A few floors below, his mother, Maha Helali, is busy taking calls and meeting with assistants at ADVANCE, the organization she founded in 1997 to service children and adults with special needs, such as her autistic son. “The motivation was Mostafa,” Helali says, “and loving him and knowing that you owed to a child to give them their best chance. If you don’t do it, who is going to do it?”
In her son’s lifetime, Helali has not only forged greater awareness around autism but also introduced new programming and therapies to Egypt and trained ranks of educators in special needs, making her staffers among the most sought after in the region. She is also working to ensure that citizens with disabilities are represented as the country reinvents itself. Helali has stretched the usual NGO framework, running her entity in the style of what she deems a social business, to underscore sustainability. Judging from her own deeply personal journey, she says society has come a long way, but there remains much work ahead to build acceptance and further integrate people with developmental and physical disabilities.
A Different Way
Helali picked up early on that something was adrift in her son’s behavior. At first, she thought it might be ADHD, but as she read more about autism, things began to click. When Mostafa was three years old, a family friend who was a psychiatrist diagnosed him with autism. Helali took her son to England, where they confirmed the diagnosis of regressive autism. When she returned to Cairo, she enrolled him in a special private school, supplemented with speech and occupational therapy sessions. She later took him for treatment in Belgium, where she visited a center where parents took their children for therapy. In the friendly atmosphere there, she noticed her son being comfortable. By this time, Helali had become schooled in various approaches and interventions for addressing autism, but there wasn’t a place in Egypt that housed all those resources.
She described the Belgian center to her psychiatrist friend: “I want to do something like this, but I wanted to do it in a different way. I want to have a home where parents come with their children for the diagnosis and for all the therapies.” Keeping everything under one roof would cut down on the hassle for parents like her who had to travel from site to site for therapies.
So in 1996, Helali, the psychiatrist, and another friend, who was an educational psychologist, partnered, bringing together their expertise and money to establish the for-profit Learning Resource Center. Today the center provides diagnostic and consultation services, educational training, and specialized therapy, among other things, for children with learning disabilities, developmental disorders, and behavioral issues. Helali says that in contributing to the company, she and her partners each focused on what they did best. “You have to be modest and know that ‘This is [how] much I know,’ and stick to what you know. And listen to those who know the other areas,” says Helali, seated at her desk clad in a blue knit blazer and a gray chiffon headscarf.
The launch of the Learning Resource Center marked a pivotal time for Helali. It seemed that all the experiences she’d had in her life up until that point had been preparing her for what she was about to do next. She had a background in banking, teaching Arabic, working in the administration of a school in Abu Dhabi, and writing reports and budgets at UNESCO’s Cairo office as the assistant to the specialist in basic sciences. “I feel always like my route was planned by God, because I got to learn a lot of things that later on helped me in what I did,” she says. She left UNESCO, a major decision she pins on her concern for Mostafa. “I’m going to be walking out of a lifetime medical insurance,” Helali says. “But then I felt, ‘Okay, what good is it if I have a medical insurance and he’s not improving?'” Adding to the stress, in between learning of Mostafa’s diagnosis, both her parents died within a year of each other.
The Learning Resource Center started as a diagnostic nursery where the idea was for children enter an intervention program and then later be integrated into the mainstream. But Helali says some children were always coming back and essentially would not be included in outside institutions. Around the same time, Helali was among seven mothers who had started a parent support group. “We were sitting there, and I said, ‘Listen, I know what we should do, but I can’t do it alone,'” she says. “These kids—their needs were not being met except with the full program… They’re never going to be accepted and included, not at this stage where the country is at.” So, in 1997, Helali used the money her late father had allocated in his will to Mostafa to found the nonprofit organization ADVANCE.
She and the other parents chipped in with their skills to get the project off the ground. What started as a day program with seven children (five of whom had autism) now resembles a school and vocational facility with 90 students from ages two to 27. There are also off-site programs, such as those that support teachers who help integrate students into ordinary schools. (ADVANCE and the Learning Resource Center are completely separate entities and don’t share operations or facilities.) In the halls of ADVANCE, children’s names are listed in English and Arabic above their cartoon character backpacks. Classrooms are labelled: “Occupational Therapy,” “Psychomotor Skills,” and “Movement and Speech.” In one room, older children practice their Arabic numerals out loud with their teacher. Inside another, a boy plays an educational game on a computer. Art projects bedeck the walls—paintings of vegetables, the face of a smiling dark-haired boy made from colorful paper. Outside, past the playground, trailers house vocational workshops where students (the older ones, especially) learn skills such as sewing, gardening, jewelry, basket weaving, and recycling paper into books and gift bags. Students also get office and sales exposure at a mini business center and a shop selling candy and small items.
Helali faced her share of difficulties in establishing the programs. Some family members questioned her investing money in an effort that promised no profit. Another major challenge came in the form of raising funds. She and others had to differentiate for people the nature of ADVANCE’s work from that of a standard NGO. First, they had to explain that they weren’t running a charity but operating programs and that the children weren’t orphans. They had to show that the money they raised went to a sponsorship fund that paid the fees for children whose parents couldn’t afford the programs. And then there was the host of bureaucratic and legal headaches.
From the start, Helali knew she would not run ADVANCE like a charity but rather, akin to a business. She wanted to avoid the pitfall of NGOs that fail to keep adequate track of their needs. Instead, she wanted to have a clear budget to determine how much needed to be targeted for fundraising and how much could be allocated for services. Having a treasurer with an MBA speaks to this approach: “We run it like a social business,” Helali says. “What I try to do is to have different activities that will raise money.” Activities that help generate money include doing external trainings as well as selling jewelry and other products (which the students make in their workshops) at craft bazaars. Helali’s latest enterprise consists of branding ADVANCE. Now, with a license, anything the organization produces will bear its brand. Helali sees this as a way to build awareness and potentially earn money off material that might print or use the name. Any profit made from these ventures is put back into the organization. As the chairperson of ADVANCE, Helali, with the rest of her board, works on a voluntary basis, garnering no income from her time spent there.
The top-notch staff training that Helali has refined over the years has become both an asset and a liability for her. As the demand for special needs teachers has grown in recent years in Arab countries, Egypt has been at the forefront in adding to that hiring pool with its special needs education colleges; ADVANCE, in particular, has earned a reputation for its qualified instructors. Other outlets, therefore, especially those in countries that can offer higher salaries, scoop up Helali’s teachers. So she’s developed a “gentleman’s agreement” with her teachers: If you get an offer, don’t leave within the school year, and notify the administration so that a replacement can be trained and you don’t disrupt the programming. For her part, to get Arabic-speaking occupational therapists, she usually turns to Jordan where there’s a known OT college because Egypt lacks such a school. (She says there are also Palestinian OT graduates, but obtaining visas can be difficult for them.)
Beyond helping children within the walls of ADVANCE, Helali says the organization also contributes to the community. The group organizes educational conferences at schools for teachers and parents. Its administration also visits colleges, and works with students and student unions so that young people, especially those becoming physicians, know how to handle a person with autism. In April, which is Autism Awareness Month, members travel to different governorates in Egypt to make sure they’re spreading the know-how and knowledge outside Cairo. Helali turned first to the governorate of Mansoura from where her father hailed as a way of paying tribute and giving back to her family.
At a broader level, Helali is also involved in national networks promoting inclusive education and the rights of disabled persons. She and other advocates have long lobbied for the millions of disabled Egyptians to be able to participate in civic life. Thanks to her and others’ efforts, 20 handicapped persons were nominated in the post-revolution elections. She notes that these nominees are not restricted to representing only the interests of disabled people but those of their districts as well. Some polling stations also made accommodations for people with physical disabilities because of their advocacy. Helali says they’ve met with officials from various political parties, questioning them: How many disabled members do you have? How many disabled nominees do you have? What’s your program for disabilities? She has sensed some change since the revolution, even as Egypt’s future remains unclear. For instance, the Ministry of Education perked up for the first time to listen to NGOs, according to her. “The revolution has helped us a lot because then people now are listening more,” she says.
Changes, Making Progress
After all these years in the field, Helali can point to some progress since she started out. A lot has changed since the time she took Mostafa to the pediatrician when she first surmised that his condition could be autism, but the doctor dismissed her worry, or when family members hushed her when she wanted to tell others that her son was autistic. Her family has since embraced Mostafa, with some even helping fundraise; her older daughter, a pharmacology and biotechnology graduate, has decided to work with special needs populations. At least, Helali says, the word autism and its Arabic equivalents are better known now than in the past. In addition, there are more centers and organizations working on autism. There’s also a regional network for autism, which Helali helped found, that includes 15 Arab countries.
Still, there’s some way to go. Helali says stigma persists in the Arab world. There is a heredity side to autism, so that with intermarriage being prevalent, the rate of autism is high in the Middle East. The understanding of exactly what autism entails is fuzzy for ordinary people as it is in other parts of the world. Helali says that in this region, several children who are not autistic are being called so because it’s perceived to be a more favorable label than “mentally retarded.” That’s what makes outreach about the specific disabilities that exist so critical. “It’s growing every year,” she says of awareness about autism. And the internet has certainly aided in the accessibility of information about the disorder, she adds.
For Helali, the work is personal. After Mostafa’s diagnosis, Helali and her husband differed on how to handle the situation and eventually divorced. It’s a fact, she points out, that there’s a very high divorce rate among families of children with special needs. Because autism is a social disorder, parents may put in a lot of effort, but there won’t necessarily be a sign or a reciprocal gesture from the child. “You really have to have this self-motivation and self-reinforcement in doing what you’re doing,” Helali stresses. Even today, Mostafa is nonverbal; he communicates in a form of sign language. Each morning, Helali has to give him verbal prompts: “Get dressed. Get up.” Doing so can get tiring. She spends two days at the resource center, two days at ADVANCE, and another day at whichever needs her more. She thinks about how she should be saving up for her son, who is training to be a gardener but probably can’t be expected to fully support himself down the line.
Examining life now, things are brighter. Mostafa’s epilepsy is under control, and when prompted, he does exactly as he’s told. On the spectrum of autism, his condition has become less severe than when first diagnosed. “He gets better every year, and it’s easier to live with him now,” Helali says. “He depends on himself in a lot of things.” There is satisfaction enough in knowing he has thrived, but that is multiplied when she lays eyes on the other students. “God knows, for me, when I’m here, they’re all Mostafa.”
Helali continues to have big plans. She hopes to set up a college or graduate program for special needs education that grants certificates to enrollees. And she hopes to duplicate ADVANCE in other governorates, but says the initiative should come from those residing within the communities.
Somehow, through all her work, Helali manages to steal away slices of time for herself, doing pottery or hitting the books, which in her case has meant studying. And to show for it is the master’s degree in special and inclusive education that she obtained from the University of London. “Mostafa did not have the chance, but I want to make sure that other children have this chance,” she says. “And that also will create a better Egypt and a more inclusive Egypt for Mostafa.”
Excerpted from Arab Women Rising: 35 Entrepreneurs Making a Difference in the Arab World, by Nafeesa Syeed and Rahilla Zafar, published by and copyright Knowledge@Wharton, 2014.