Al-Ahram Weekly 20 - 26 January 2000 Issue No. 465
Published in Cairo by AL-AHRAM established in 1875

Not so different after all Out of love, fear or shame, many families hide their children. The reason? They have Down's Syndrome. As Yasmine El-Rashidi discovers, however, difference doesn't always mean disability photo: Sherif Sonbol

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It is easy to look at Mai Abdel-Fattah and think she is just a helpless, learning-impaired child (in fact, the less sensitive would probably think: "Poor girl, she's retarded"). But that wouldn't be true. Rather, she is a lively, sociable, sports-crazy 15-year-old, who just happens to have been born with an extra chromosome. It could have given her blue eyes or blond hair. But it was chromosome 21, and it gave her Down's Syndrome.

People seem to think that her slightly bulging, slanted eyes give them permission to stare. They stare at her whenever she leaves her house: when she is walking down the street, when she is out on errands or eating lunch.

Mai, however, acts as if she doesn't care.

Every evening a little after 8.00pm, she prepares her gear, packs her bag, and makes her way to the Gezira Sporting Club with her parents and 26-year-old sister, Maysoun. The guards at the door wave hello, and she beams back her trademark smile -- a seemingly permanent fixture on her soft, round face.

"Bye," she waves to her family, as she leaps out of the small white car. A second later, she is out of sight.

"She loves the gymnasium," her sister says laughing. "Everyone chats with her, and all the men are nice and friendly!"

Rigged out in her black stretch pants and oversized beige T-shirt, Mai could be any 15-year-old trying to get into shape. Except that it is only at the club that people are nice to her. Everywhere else, her family says, people snicker and sneer.

"She pretends she doesn't care," Maysoun says. "But she is actually very hurt. She always asks me 'why are they staring at me? Is it because I'm fat?'"

She is fat, but she can't help it.

The dictionary says: Down's Syndrome, genetic defect. Characterised by a broad, flat face, up-slanted eyes, low-set ears, small nose, enlarged tongue and lips, heart or kidney malformations, and moderate to severe mental retardation. Also includes underactive thyroid glands, identifiable by bulging eyes and excess fat deposits.

One wouldn't know it to look at the bubbly teenager working out at the gym, walking endlessly around the track, and sitting by the pool, joking with her sister and their friends, but Mai gets hurt. Very hurt.

"She will never cry in front of anyone except me," Maysoun says. "All the hurt and frustration from the comments and stares are stored inside her. It's only when we are alone in our room that she cries and cries."

Mai hates being laughed at, being called "crazy" and "demented". She despises the fact that she will never be treated like a person -- a human being with rights and desires.

Still, she has found a place at the club where she can be herself -- and her family does not treat her "differently". She is encouraged to be herself: a young woman with dreams and goals, interests and talents -- simply to be comfortable with who she is. She was dealt an ace in her family, and the gratitude shows. For others with Down's Syndrome, though, that card is more often a joker.

Evana Hoch, an expert on Down's Syndrome, says that too many families are still hiding their children away -- pretending to others that they do not exist. "They are ashamed," Hoch says. "It's still considered a taboo."

The existence of that taboo was brought home to her sharply when she came to Egypt in 1994. Before that, Hoch had been in Brazil, working with children who suffer from Down's Syndrome.

"What really struck me when I came here," she says, "was the fact that in the first few years here, I didn't see a single person with Down's Syndrome in a public place. I came to believe that they were hidden away at home". Her assumption proved correct.

Having begun work toward a master's degree in sociology at the American University in Cairo, Hoch was disheartened by what she found at first. "There was absolutely no information about Down's Syndrome in particular," she says. "There was no data, no research, no figures. Absolutely no literature on Down's Syndrome in Egypt whatsoever." She decided it was up to her to create it -- and her efforts won her the Frank G Wisner graduate thesis award for scholarly excellence.

It was tough, though, to approach parents and relatives who considered her inquiries rude and intrusive. Her determination to bring the issue out into the open, however, helped Hoch break the taboo barrier and encourage parents to confide.

"My interviews and research were conducted among parents of children in centres like the Right to Live and the Integrated Care Centre in Zeitoun," she says. "At first they were very sceptical, but eventually they opened up and thanked me for giving them the opportunity to talk about all those feelings and thoughts that had been bottled up for so long. It was like therapy for them."

These parents, however, were lucky enough to have a place for their child at one of the centres for mentally retarded children -- none of which are exclusively for the uncounted Down's Syndrome population. But what about the others, who continue to hide their loved ones like a shameful secret? What about those who cannot afford the services, live too far away, or simply can't find a place at a centre?

"The biggest problem is our background and the process of socialisation," says Hoch. "We've been told not to look at people who look different. If a child stares at someone with Down's Syndrome, their mother says 'don't look, it's rude'. Why? We're never told. It's just rude -- taboo. So from a very early age, that prejudice is created. It's at the heart of society and it's only being perpetuated."

Hoch had assumed that extended family networks considered characteristic of Egyptian society would provide an in-built support system for the parents of a child with Down's Syndrome. "But in fact, the extended family actually hide a member with Down's, so as not to jeopardise relatives' chances of getting married -- or the family's reputation as a whole!"

In Europe and the United States, Hoch argues, such attitudes are antiquated. There, she says, "people with Down's Syndrome are getting married, going out to work and taking care of themselves. Society has given them that chance. They've taken it and are doing well".

The key, though, is the chance.

It is often immensely difficult for the parents of a child with DS to make a leap of faith and stop trying to protect that child from any harm that might befall him or her. It is easier for society, too, to assume that DS precludes understanding or achievement of any sort. It is also true that those with moderate to severe cases may not be able to do very much without help. But they can do some things -- if they are given the chance.

"Everyone immediately assumes, 'she has Down's Syndrome, that means she can't think and has no life'. That's absolutely not true. How can you say that if you don't even give them the chance to prove themselves?" Hoch asks in frustration. The problem, she believes, is that society imposes certain standards of productivity and beauty. "Those are the standards by which people are judged. If you fail to meet them, or fall even slightly below the 'norm', then you're put aside -- shut off in a separate compartment and labelled 'different'."

At a conference on disabilities held in Washington, DC, a few years ago, one participant, Maria Kangere of the Community-Based Rehabilitation Alliance in Combra, Uganda, poignantly spoke about the notion: "My older brother had a mental illness," she said. "We were never allowed to talk about it, not even in a whisper. It was a very stigmatising condition for the whole family. The only time we were free of it was after my brother died, because in my culture, no one speaks of the dead."

This situation prevails in most societies where institutional care for the mentally challenged -- which, paradoxically, seems to make their integration into society easier and more acceptable -- is unavailable or inadequate. Hoch believes such attitudes can only be uprooted by transforming the educational system -- reevaluating what we teach children and why.

"Isn't it important to teach them about the basics of life, too?" Hoch asks, "We need to tell them, 'look, there are people not born like you, they look a bit different, but it's okay. It's fine to talk to them and play with them'". The only difference, she maintains, is that their "defects" show on the outside, rather than being flaws they can keep hidden from others.

Luckily for Mai, her parents knew that from the start. "It was normal for us," says her father, Saleh Abdel-Fattah. "We were abroad when Mai was born, and we took her to centres and brought her teachers. We always treated her like we did other children -- exactly the same."

In this atmosphere of support and equality -- which has been a constitutive factor of her fun-loving personality -- Mai established a routine for herself, made up of commitments and obligations.

"In terms of learning," her father says, "we found that she didn't get very far. What she would learn today, the teacher would have to teach her again tomorrow and the day after. But otherwise, she takes care of herself".

In the morning, she chooses what she will wear that day, and the outfit she thinks her sister -- whom she adores -- should wear to work. After tea and a sandwich, Mai too goes to her own private work place: "the terrace," her father says. "It used to be college before Maysoun graduated, and now it's the office."

Her transit point is the living room, where she calls for the driver to bring her the car. There, she sits on one of the big, soft chairs, stretches her arms out, and "drives" to work. In her "college" days, she would take her books and pens out with her too. But today, as a working girl, she has only three essential tools: her toy cell phone, an empty box of cigarettes, and a pen.

And at the end of the day, after hours of chatting and meetings with "business associates" and "friends", she drives back home, has lunch with her family, and then puts on some lipstick and goes "out" for shisha or tea. Her hang-out spot of choice: the Abdel-Fattahs' dining room.

Yes, she has style and she has character. She knows what she wants and she knows what is in.

Sitting at the club one cold Wednesday evening, Mai complains to her sister that her mobile is broken. "I need a new one," she says, fishing the black look-alike out of her psychedelic gym bag. "Give me a thousand pounds to buy one." She has been to the mobile fair, and she knows.

"Okay, I'll get you one just like mine," Maysoun replies.

"Yuck, I hate those blue ones. I want a green one."

Mai, her sister explains, wants "a T18".

A phone rings at a nearby table, and Mai automatically looks down at her phone.

"Hello," she begins. "Ah! How are you? Yes, yes. No, I can't meet you today I have an appointment. Yes. Okay. I told you. Bye."

"My fiancé," she tells the gathering as she puts her phone away. "The new one."

Yes, she has had many -- just like mobiles, which, her sister says she changes according to the latest trend.

She is definitely trendy, begging her sister to hold a party so that she can wear her short red skirt, have her hair done, and put on more make-up than she is normally allowed.

"And I want a cake this big," she says, stretching her arms out as far as she can reach. "And lots of friends."

She means Maysoun's friends, her father's friends from the club, and her own (imaginary) friends, who keep her company during weekday mornings and afternoons.

To some, her concocted routine is in itself a sign that she is unstable and not normal. But it is also a sign that she knows what the so-called "norm" is -- what is going on in the world and what she is missing out on. She knows what others do, what they want and think and feel. And she too is going to be a part of that. She is also going to help others like herself.

"There is another girl with Down's Syndrome who comes to the club," her father says. "Mai used to take the girl and encourage her to walk around the track with her. Whenever she sees another person with Down's Syndrome, she says, 'Daddy, look, that girl looks like me'."

She is well aware of the difference, and knows she will never be quite like the norm. But she is also aware of the fact that some people treat her with love and affection, that they don't look at her as if she was strange.

So why, she asks her sister when they are alone in their room, doesn't everyone else?

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