If I appear peculiar, There's nothing I can do, You must accept me as I am, As I've accepted you — Denny Davis “Nobody signs up to have a child with special needs,” said US actor John McGinley speaking to the CBC channel about his unique experience in raising a son with Downs Syndrome as part of his campaign to enhance respect for the mentally-challenged.
“Then you realise that this is a gift; this child is the light. And if you can nourish that light and let it shine, you have an opportunity to get closer to God, and that's grace.” In Egypt, however, the disabled are still often having to fend for themselves and are far from leading normal, prosperous lives. They are suffering under the double onslaught of a government that hardly serves their most basic needs, ranging from infrastructure to healthcare, good insurance and education, and a society that can often not accept people with special needs as equally productive citizens.
“We have to admit that we are a society that is highly discriminatory in many ways, and disability is no exception,” regretted Noha Al-Sahrawi, an activist in the field and the mother of a nine-year-old child with Downs Syndrome (DS).
Al-Sahrawi's success story with her daughter reads like a classic Hollywood script. When she was told that her first newborn had DS, she decided she would not give up. Initial shock soon gave way to an inner wealth of energy and persistence: she abandoned a career in journalism and went to the US to study brain development at the Glenn Doman Institute for the Achievement of Human Potential.
Thanks to her persistent early intervention efforts, her DS daughter's IQ is the same as that of an average child of her age. She is integrated into a mainstream school and has been among the top A-grade students of her class. She is also a brilliant ballet dancer and gymnast.
That perseverance and excellence has, however, been met with little or no appreciation by a society that largely frowns on the mentally-challenged. To her shock, Al-Sahrawi's DS daughter was dismissed from school for the reason that her looks could annoy the parents of her peers. A disenchanted Al-Sahrawi decided to move her child to another school, but she has filed a lawsuit against the school for discriminating against her child.
Al-Sahrawi's daughter is not the only case of such discrimination. Sahar Donia, a physician and the mother of nine-year-old child with DS, Farah, says that schooling is one major challenge for all parents of special needs children. “We, as parents, have worked so hard to help our children reach an average IQ, and it is extremely shocking when we find that regular schools can nip all that effort in the bud when they refuse to admit our children,” Donia lamented.
“I for one pay more than double the fees of my daughter's classmates for the mere reason that my daughter is a DS child, and all despite the fact that her IQ is average. This is so unfair, and it encourages more parents to hide their children with such difficulties.” Disability is still sometimes considered to be a stigma in Egypt, something to hide and be ashamed of. Many families may ignore a child with a disability because they either cannot afford the social stigma or the costs of the prolonged care and rehabilitation that the child may need.
Many such families also happen to be economically vulnerable or uneducated and could thus tend to hide a member with special needs for fear of reducing the marital chances of his/her siblings.
“If only parents knew how early intervention programmes can make a difference to their special needs children; if only people knew how beneficial it is to have a special needs child enrolled with other kids in a regular class,” Donia lamented with a sigh.
“Those kids are a blessing; they teach their parents to be patient and loving, and they teach their siblings and classmates how to be kind to others and how to act responsibly. My DS daughter, Farah, has actually taught me how to be a patient and caring mother to my other three children.” Al-Sahrawi and Donia have decided that their efforts should not stop at their own personal success stories, but instead they have taken the message to the whole society. They have formed a lobby group that has been working on increasing social awareness of the rights of special needs people in the media.
They also took the issue to those in charge of writing Egypt's 2013 Constitution, and this could help guarantee many constitutional rights for the disabled and their translation into laws. They are currently founding a non-profit organisation (NGO) that will aim to increase awareness and provide support for those with special needs. CONFLICTING NUMBERS: Activists agree that the social stigma attached to disability has made it difficult to put together an accurate database of the number of special needs people in Egypt, hence leading to further inadequacy in the services provided to this often marginalised sector of society. Egypt's 2006 census, a national survey carried out every ten years, says that almost a million Egyptians suffer from some sort of disability—a figure that census collectors estimate has risen to around four to five million over recent years.
But this number, specialists insist, is an underestimate of the actual size of the population in Egypt.
According to the World Health Organisation, people with disabilities represent approximately 10 per cent of the Egyptian population, or about 8.5 million people. But according to Plan Egypt, a leading 75-year-old international children's development organisation promoting children's rights in 50 countries, “the UN estimates that there are more than 12 million people living with disabilities in Egypt, of which around four million are children.” “If we include the families that are affected by disabilities, we can increase the number to more than 36 million people,” writes the Plan on its Website. “Just two per cent of children with disabilities have access to rehabilitation services.” Al-Sahrawi and many other activists in the field speculate that there may be some 15 to 18 million people with special needs in Egypt. They argue that the UN has estimated that disability generally constitutes around 23 per cent of any poor population – a percentage that drops to around 17 to 18 per cent of those living in developed countries. “The World Bank, for instance, estimates that there are 18 million people with special needs in Egypt, that is, to put the number into perspective, a population that constitutes a larger minority than the Copts,” Al-Sahrawi said.
The absence of a unified definition of disability, and an awareness of its different kinds, has been seen as one of the main reasons why there is no one accurate figure reflecting the growth of the issue in Egypt.
The general population census, for instance, does not include categories of disability that, if included, might dramatically affect the estimates of Egypt's disabled population. These categories include psychiatric disorders, epilepsy, learning disabilities, and certain chronic diseases, to name a few. Lack of awareness on the part of those collecting the data has also been a factor in ignoring many categories of special needs. “Mental disability, for instance, ranges from mild brain injury, including slow learners, dyslexia and ADHD, to moderate and severe injury. If these are put together, it would mean we are talking about an average of 17 million people. But if we also include those who were not born disabled but developed it later in life, like the elderly and those having psychological disorders, then the figure may hit 19.5 million people,” Al-Sahrawi contended. The geographical distribution of disability is another reason why there is no accurate database on the issue. The fact that disability is particularly high in areas of severe poverty and high rates of illiteracy, especially in Upper Egypt where disability is widely seen as a stigma to hide, makes a large part of the disabled population largely inaccessible to census collectors who are then unable to get accurate numbers. WHY SO WIDESPREAD? Specialists describe many causes of disability in children, ranging from genetic factors and complications related to pregnancy or childbirth to environmental factors, including those related to political unrest, and the maltreatment of diseases affecting newborns.
But there is also a link between disability, poverty and illiteracy. This link is particularly prominent in Egypt, where more than 40 per cent of the population is reportedly living below the poverty line and where the number of illiterate people aged 10 years or more exceeded 16 million, 10.3 million of them females, in 2012, according to the Central Agency for Public Mobilisation and Statistics (CAPMAS). According to the latter, the vast majority of the poor and illiterate are concentrated in Upper Egypt, where disability is also believed to be rife. The inadequacy of healthcare in underprivileged areas, specialists agree, is one major factor increasing cases of disability in those areas, even reducing their chances of rehabilitation. Al-Sahrawi argues that intermarriage among relatives represents a major factor behind the proliferation of disability in Upper Egypt, where figures of the real dimension of this issue remain elusive.
Lack of proper medical equipment during delivery, often conducted at home at the hands of non-professionals in rural areas, let alone the lack of hygiene, may all result in newborns with disabilities. A lack of oxygen reaching the brain during delivery may result in the atrophy of certain brain cells that could result in mental or physical disability, depending on which brain cells are affected in the process. Sometimes the lack of incubators, for instance, may also make a newborn susceptible to complications that may ultimately develop into a physical or mental disability. “In many cases, a child who is born healthy but gets a one-day fever that is not properly treated develops a disability as a result,” Al-Sahrawi said. “In the same vein, most children who are born with a disability are not properly diagnosed until they are almost six or seven years old, making intervention and rehabilitation more difficult.” Early detection of the problem, on the other hand, can prevent an impairment from becoming a disability, prevent or minimise the degree of a primary disability, and avoid the occurrence of secondary handicaps. Mona Sanad of the disability and early intervention department at Al-Azhar University's child-disability centre told a seminar that one study conducted on a group of DS children aged between seven and nine years old found that those who had benefited from special education and early intervention in the pre-school years scored 20 per cent higher on intelligent tests than those who had not. Without early intervention, agreed Alaa Shukrallah, chairman of the non-governmental Association for Health and Environmental Development (AHED) and a pediatrician specialised in child disability and early intervention programmes, “a child with a motor handicap will develop learning disabilities resulting from limited exposure to the environment and knowledge, while a child suffering from strabismus may lose her sight altogether, to mention just two examples.” “Failure to intervene at an appropriate time is even more dangerous for those children who are born with a metabolic disorder and an enzyme deficiency causing brain damage and severe disability,” Shukrallah said. “A simple blood test at birth or in early infancy could reverse the process.” Al-Sahrawi lamented that such simple early detection and intervention measures are often not available in underprivileged areas.
“Healthcare providers for cases of mental disability are mostly inefficient and unqualified for rehabilitation or early diagnosis and intervention. In rural areas such healthcare is almost nonexistent,” she said. In cases of mental disability, only a few facilities provide early diagnosis and intervention services, but most of these are based in Cairo. And even when their children are diagnosed, families in Upper Egypt and other rural or impoverished areas are usually economically vulnerable and cannot afford the high costs of the prolonged care a disabled person needs. “So the end result is that this disabled family member is ignored and even hidden,” Al-Sahrawi lamented. CHALLENGES FOR THE DISABLED: Disabilities in children often affect their educational opportunities. In some developing countries, the NGO CARE estimates that “up to 90 per cent of children with disabilities do not attend school, limiting their chances for better education and future employment.” Although laws passed in 1975 stipulate that the country's public and private-sector industries are required to allocate five per cent of their vacancies to persons with special needs, activists insist that such legislation is hardly ever enforced and definitely does not outlaw discrimination.
Activists in the field claim that many companies have disabled persons on their payrolls to meet the quota, but do not actually employ those people. “The most common case is that they either do not employ people with special needs in the first place, or they just put them on their pay roll and ask them to stay at home, which means that they look at them as a burden and not as equally productive citizens,” Al-Sahrawi said.
Although the government pays a hefty pension of about LE200 to those with special needs, Al-Sahrawi said that “many prefer not to take it because if they did they would be obliged to write disabled on their ID cards and that would immediately mean they would have almost zero chances when it came to employment.” While there are many non-governmental organisations that focus their work on people with disabilities, critics argue that such NGOs tend to approach the issue as one of charity, rather than of integration and employment. People with special needs for their part insist that they do not want charity, but rather are after fair and equal opportunities in employment, education, facilities and other walks of life.
“Those who are physically challenged, particularly those using wheelchairs, may not go to college and are deprived of ordinary needs for the mere reason that most facilities are not equipped with ramps,” Al-Sahrawi said.
Obtaining a good education can be a major challenge for the physically and mentally challenged. Only three colleges, said Al-Sahrawi, admit people with special needs. “Those with mental disabilities, even those having mild forms, often do not go to college in the first place, despite the fact that many of them have talents.” Although a ministerial decree was passed after the 25 January Revolution stipulating that schools should have a quota of five to ten per cent of special needs students mainstreamed in regular classes, activists insist that the decision remains largely unbinding on private schools and is not even necessarily applied in public ones.
Public schools, where classes are crammed and teachers are sometimes hardly trained, are definitely not equipped for inclusion and, thus, the mentally challenged are often automatically rejected. But these same challenges have all been impetuses for Al-Sahrawi, Donia and others, who launched a campaign called Zayee Zayak ([I'm like you) in cooperation with an NGO called Helm (Dream) to increase awareness of the problem via a media campaign before Egypt's new constitution was written and approved. Their efforts paid off. “For the first time ever, special needs people are mentioned in eight articles, instead of one, of the new constitution” Donia told Al-Ahram Weekly. “The disabled were mentioned in one article concerning discrimination in previous constitutions, but this time their inclusion in society in general is stressed in more than one article, and this will make it easier to pass laws confirming their rights to education, employment and social care in general and criminalising discrimination against them.” The consensus remains, however, that for these constitutional rights to make headway, the coming government and president should possess the political will to translate them into real laws and legislation that will help the integration of the disabled in all walks of life.
Only then, said Donia, “will we feel we are walking on solid ground.”
Much remains to be done on Al-Sahrawi's and Donia's agenda. “We intend to launch a nationwide campaign to spread awareness of the importance of inclusion in schools and in poor areas, train teachers and those in the healthcare business on early detection and intervention programmes, help parents of children with disabilities form support groups in the way we did with DS children, and try to change the stereotypical image of the disabled in the media through, for instance, having celebrities talking about experiences to inspire and motivate others,” Al-Sahrawi said. “There is a long way to go, of course, but it's a step forward,” Donia concluded.
