March 21 is World Down Syndrome Day
For several months we have been able to see People’s Artists of Ukraine Ada Rohovtseva and Bohdan Stupka with children afflicted by Down syndrome on Kyiv’s billboards. There are also social ads in the underground urging the public to this group of children with understanding. Apparently, there is a problem here that requires public attention.
In Ukraine 300–400 babies with Down syndrome are born every year. Parents abandon them in maternity hospitals in 85 percent of cases. Why? Do they perceive the birth of such children as a punishment from heaven? Are they afraid of hardships? Do they lack an understanding of the essence and consequences of the diagnosis?
Down syndrome is sometimes called “Down’s disease.” It is considered to be a serious disease that requires medical treatment.
The word “syndrome” designates, in fact, only a number of certain attributes and characteristics. Down syndrome was described for the first time by the English doctor, John Langdon Down, in 1866, and it is not a disease, but a sort of genetic anomaly, when the odd 47th chromosome is accidentally added to the usual 46 in an impregnated cell. The reasons for this are still unknown. It was only found out that the incidence rate does not depend on the level of development of the country, climatic zone, or nationality, education, condition of health, or the habits of the baby’s parents. The sole connection discovered by the researchers is the age of the mother: the risk group includes women under 16 and over 35. Among 19-year-old women the Down syndrome incidence rate is 1 per 1,600, whereas among 39-year-olds it is 1 per 80.
But can the birth of a child with this syndrome be regarded as a tragedy? Can presence of an odd chromosome be regarded as a mutilation? Let us view it from another angle. Everything made by God is inherently perfect. A human being was also created perfect: intelligent, creative, and thinking. Everything in a human organism, from the crystalline lens to the genes, is so unfathomably complicated and well-designed that it surprises us even now, despite the achievements of science.
Is it conceivable that a genetic anomaly we call Down syndrome is not a defect or disease, but a mistake of the Divine Power? Can this additional chromosome bring along additional abilities, another perception of the world, and another type of human development? After all, these people are called differently abled for a reason. True, the presence of this odd chromosome causes some physical abnormalities due to which children go through different stages of development more slowly and lag behind their peers in some respects. But most of them are able to do many things their peers do: read, write, draw, and play musical instruments.
According to the data of the European Congress on Down Syndrome called “Accepting Challenge,” 75 percent of children with this diagnosis in Europe and the US study in non-specialized schools and have a real opportunity to live a full-fledged life: be fully engaged in social life, have a job, and reach success. For example, in 1996 Pascal Duquenne, a Belgian actor with Down syndrome, received the best actor award of the Cannes Festival for his role in the film The Eighth Day.
Respect and love of the people around and studying according to special programs are the conditions for development of differently abled children. On the other hand, absolute degradation, helplessness, and retardation of physical and emotional development are the typical symptoms of the so-called syndrome of hospitalism, which await those who are brought up in specialized medical establishments, in isolation and without any contact with their mothers. Observing these children contributed to the misconception that all people with Down syndrome are aggressive, mentally retarded, and untalented.
In Europe 20 percent of children with Down syndrome are brought up in specialized establishments, whereas in Ukraine, 85 percent. The difference is obvious. Certainly, the development of inclusive education, when children with special needs study in non-specialized schools, is only taking shape and the social aid and support to families with children with Down syndrome leave much to be desired, but the attitude of the society to these special, kind, sincere, and lovable people is gradually improving. They are inferior to us in some things, but they are wiser in others, because they accept us as we are, with our indifference and cruelty. But will we be wise enough to accept these people as they are? Haven’t they come to us to teach us unconditional love, tolerance, and patience?
