ANOTHER WORLD

Down's syndrome… On hearing these words, many people immediately imagine a cruel chain of offensive medical terms like oligophrenics, schizophrenics or idiots. Many people are also overwhelmed by feelings of pity or repulsion. Perhaps people should not be blamed for this since most of them have never communicated with people suffering from Down's syndrome, otherwise they would not dare say anything offensive about them. 

Every year thousands of mothers leave their long-awaited child with this affliction, often their first-born, at maternity hospitals. And those who do not give up their child in fact go underground. We know nothing about their heroic struggle for the future of their children because many of them hide their kids at home. In the West, upon the initiative of Presidents John Kennedy and Charles de Gaulle, who had children with the world's most common genetic anomaly in their families, such children have long been protected by society. In the USA, they are even called alternatively gifted and are involved in communicating with seriously ill people who have isolated themselves with their problems.

Such children actually have a rare natural gift - sincere kindness and inability to respond to evil with evil, and what's more, they have extrasensory intuition. However, the trouble is that adults do not allow all these qualities to develop. We have to admit that in our country, as well as in the whole post-Soviet area, the life of people suffering from Down's syndrome is still surrounded by fear and prejudice. They are regarded as aggressive, unintelligent and psychologically inferior. Often families that do not send their child to special boarding schools become pariahs because it is believed that normal parents cannot have such a child, which is why their whole life can be rightly called a struggle with society.

An extra chromosome

Down's syndrome is a form of chromosome pathology in which a person has 47 chromosomes instead of the normal 46. The main clinical manifestations are retarded psychological and physical development, characteristic changes in the appearance and, frequently, defects of internal organs. The disease was named after British doctor John Down, who was the first to describe it in 1866.

According to the World Health Organization (WHO), Down's syndrome is not a rare pathology. On average, there is one case in 700 babies. This figure has now fallen to one per 1,100, and occurs with equal frequency both in boys and girls. Late childbirth (after 35) increases the chances of a child being born with Down's syndrome.

However, a woman runs this risk at any age. Among women who give birth before 25, only one baby in 1,400 is born with this disorder, before 30 - one in 1,000, before 35 - one in 350, before 42 - one in 60, and after 49 one in 12.

The syndrome is present in all human races throughout the world. To all appearances, it has existed as long as mankind has.

No-one has managed to correct these chromosomal defects. There are rare cases of the psychological-pedagogical rehabilitation of individual children when, as a result of tremendous efforts by psychologists, they became absolutely healthy, went to ordinary schools and even managed to go through higher education. This goes to show that work with these children is not a hopeless business, but requires special knowledge and great spiritual and physical effort.

About the housing issue again

Ruslan was a long-awaited baby for his 40-year-old mother Svelana Safarova. She did not have any other children. The woman worked as an engineer-designer at the Caspian Shipping Company all her life. Her personal life was troubled. Her parents had died a long time ago, and she did not have any close relatives. That's why she decided that only hard work could muffle the feeling of loneliness that overwhelmed her from time to time. When she was over 40, she suddenly met an admirer who proposed marriage. Without thinking too much, Svetlana decided to marry him. One year later, Safarova found out that she was pregnant. She was absolutely elated, and even her age was not able to suppress the woman's awakening maternal instinct. She decided to bear the child at any price, and the price was very high... The baby was born on time, but doctors did not show her the baby for several days and, in response to all the woman's questions, they just kept quiet. Finally, on the third day, the head of the maternity department herself visited her ward and suggested that Svetlana give up the baby because he was born with Down's syndrome.

The doctor tried to persuade her to "give up" the baby, and that's it. But Svetlana decided that she would only leave the maternity hospital with her son, and she did so. When her husband found out that she had given birth to an ill baby, he immediately packed his things and left her. On finding out that she had decided to keep such a baby, many of Svetlana's friends turned their back on her. So they just stayed together - Svetlana and her child, whom she named Ruslan.

Years passed, Ruslan grew up, Svetlana continued to work and had to hire a babysitter because he was denied admission to school. The woman spent all her free time teaching her son. With great difficulty, she managed to teach the boy how to read, count and write. He also painted very well. Svetlana even tried to send him to a painting circle, but the teacher refused to accept the boy when she found out what sort of problem he had. In essence, Ruslan grew up inside his flat and did not like going out because he knew that if he left his flat, he would immediately become a laughing stock for his neighbours and passers-by. For this reason, he preferred to lock himself in his room and paint. When he turned 20, he already had a decent collection of his own works. His mother always dreamt of organizing an exhibition of her son's paintings, but this dream was not fated to come true. One cloudy autumn day, on her way home from work, she collapsed on the bus and then died of a heart attack on her way to hospital in an ambulance. This is how Ruslan came to be alone in this cruel world and he was not ready to accept it as it was. But his loneliness did not last very long. His neighbour, an employee of the housing department, applied for custody of Ruslan, an invalid of the first degree, almost immediately after Svetlana's death. One month later she became Ruslan's guardian and a couple of months later an "ambulance" arrived at his house and took Ruslan, who did not realize what was going on, to a special boarding school for disabled people. All this was done by his guardian neighbour who simply needed a couple of extra-rooms. According to neighbours and friends of the Safarov family, Ruslan died after two years at the boarding school...

We are like everyone else

This story is only one fragment of the general picture. Children with this disorder, if they are left to their own devices, are not able to defend themselves or to prove anything to anyone. No-one will take them seriously, although in the West things are absolutely different. Nevertheless, they have the same right to be regarded as full members of society.

This is what the Azerbaijani association of people with Down's syndrome, the only organization of the sort in our country, stands for. It occupies an ordinary small room at 16 Racabli Street in the Narimanov district.

When we entered the room, we immediately sensed the friendly atmosphere that reigned there, as our hosts were children suffering from Down's syndrome. It is noticeable that they are all smiling, friendly and absolutely free of aggression.

According to the head of this association, Zarifa Mammadova, the organization was set up in 2002 through the children's psycho-neurological hospital. It is no accident that this association is headed by Zarifa Mammadova. She, like no other, understands parents whose children were born with an extra chromosome - her son Rasad was also born with Down's syndrome. The association is attended by 67 children. Absolutely healthy children often visit here. They are mainly brothers and sisters, as well as neighbours of these children, and their presence is very important. Incidentally, there is no accurate statistical information about the number of children with an extra chromosome in our country, because in the regions many parents prefer to hide their children suffering from this disorder.

"Initially, we set up a theatre circle for children with Down's syndrome which then turned into a puppet theatre called "Terrors" for children with limited abilities.

"Today the potential of our small theatre has developed and now children no longer hide behind puppets, but perform on the stage themselves. If a child is physically or mentally retarded, it does not mean that he will be weak from a creative point of view. We set up our theatre, firstly, as a method for the social and cultural rehabilitation of children, secondly, to enable children to communicate, and thirdly, in order for them to integrate into society, which must understand that they are like everybody else."

What is next?

According to Mammadova, the whole problem is that children with Down's syndrome often remain out of sight.

"Because of their ignorance, many people believe that these children are mentally disturbed, others think that these children are disabled and are not able to understand anything. They do not know that this disorder is caused by a chromosome. These children are no different from others; they are simply developing very slowly. For a child to develop to the same level as others, he needs not so much medical aid and medicines as ordinary communication. If a child with Down's syndrome is stuffed with medicines and is not allowed to communicate with his peers, he will not develop. In many respects, this process depends on the atmosphere in which a child grows and on how his parents treat him. The parents of such children hide their child for many years and are ashamed to show him to society because society does not accept them, points a finger at them and is outraged that children with Down's syndrome are communicating with their children. Many people have been trying to protect their child from this outrage both in the capital and the regions of Azerbaijan. Personally I kept my child at home for 10 years and he only went to a special school. This state of affairs lasted until the "Terrors" puppet theatre was set up. He had a very limited circle and only now do I understand how much I lost in all these years. Now I am trying to prevent other parents, whose children are suffering from Down's syndrome, from making the same mistake," Zarifa Mammadova says.

On finding out that their child has been born with this syndrome, many fall into shock for a long time. This happens because at some maternity hospitals, the medical personnel still warn parents that they may not be able to raise such a child and suggest handing him over to the state. "You can have another baby - doctors say. This one is 'defective'."

"Defective" because God gave him the 47th chromosome. However, the number of orphans in the country is being artificially increased because not a single boarding school will give the child the warmth that will surround him in his own family. Fortunately, more and more doctors have been trying to support mothers in the recent period. For example, at the children's psycho-neurological hospital, women who bear children with abnomalities are advised to address the association for consultation and help. However, there is another aspect here. Not every mother immediately contacts the hospital as she prefers isolation. The reason for this should be sought in people's negative attitude to the difficult situation facing these women.

We would not say that people with Down's syndrome are developing equally in different countries. "In Azerbaijan, the issue of integrated and inclusive education has only just been raised, and many children with Down's syndrome went to ordinary kindergartens and schools last year. We are trying to raise this issue because not a single child, if he can talk, should remain beyond the reach of the Education Ministry." 

According to our interviewee, children with Down's syndrome are categorized as first or second degree disabled immediately after they are born. However, the state provides aid in the form of money payments worth 30-35 manats, and this money is not even enough for food. Children grow up unwanted, although people with Down's syndrome could learn many professions. For example, in the West they often work at packing factories and post offices, while in our country no-one thinks of creating jobs for them. 

"We have organized a school of cookery for these children in our society. This is a great help for them because many children have learnt to cook simple dishes for themselves as their parents are not always around," the head of the association said. "I am sure that it is high time for the state to organize courses for these children where they could learn a profession and gain a certificate to prove this. This would help them find a job in the future and make their living, because you have to remember that parents are not eternal. What should these children do if they remain alone?"

People with Down's syndrome are ready to integrate into society, but it seems that our society, which is not always healthy, is not ready to accept them. The main danger for a child suffering from Down's syndrome is posed not by his state of health, but by prejudice, fear, indifference and… pity from people around him. They create "barriers" inside society which prevent people with Down's syndrome from getting the support they need so much. We have to help them instead of driving them into "reservations" just because they are slightly different…