Most of us, born with normal physical and mental characteristics, live our lives with little care and understanding of those who have not been so fortunate. This is a problem in any society, but in Ukraine the lack of government support creates even greater difficulties.
According to official statistics, there are 284,000 Ukrainians with some form of disability. Of these, 150,000 are children under the age of 18. Of this number, 88,000 are officially designated as invalids, which in the Ukrainian context means persons who are unable to live on their own, requiring full time support. Of these 88,000 invalids, official statistics show that 14,800 are not cared for through any state sponsored social program.
Keeping in mind that statistics tend to vary depending on which department collects them and also that not everyone qualifies for disabled status, one cannot help but wonder what the actual numbers are. For example, in Boyarka, a town in Kyiv oblast with a population of 40,000, there are 238 families officially registered as having at least one disabled family member.
Yet, in this same city in just one apartment block with approximately 100 flats, there are five families known to have at least one child with special needs. While not scientifically or statistically valid, this particular situation, with five percent having special needs children, would suggest that the number of families in Ukraine with similar problem could range from one to two million persons.
While the numbers of invalid children may be an obscure figure, the difficulties for such a child - and the child's family - are not. For many invalid children, this means being at home, 24 hours a day, 7 days a week, 12 months a year. And it often means that one or more family members are needed to also be in the home to provide care.
In addition to the needs for care, often accompanied by a lack of social acceptance of the invalid child, there is also the problem that the mother or other caregiver receives government help that is paltry at best, usually no more than the equivalent of $60 per month.
Even when an invalid child is able to venture outside the home, sidewalks, building entrances, underground passages and public transportation are ill-equipped for anyone with less than a perfect set of legs. Further, schools and places of employment are not user friendly for persons who deviate from the norm in eyesight, hearing and mental capacity.
Specialized schools have been set up for those who are deaf or blind, but parents of children with developmental disabilities attending special needs schools describe them more as babysitting than institutions imparting vital life skills.
Additionally, the initial separation of blind, deaf and other kids with special needs into their respective places of learning is not complemented with reintegration into peer groups or society. The result is all special needs children are weeded out of the school system by the 3rd or 4th form, and thus further separated from the mainstream.
The most common forms of disability in Ukraine are autism, cerebral palsy, heart defects, blindness and deafness. Also present but less well known are Down's syndrome, mental retardation, microcephaly, Asperger's syndrome and epilepsy. In Ukraine, it is widely believed that birth defects due to nutritional and ecological factors are the leading cause of developmental disabilities, mental incapacity and infant mortality.
However, as is the case around the world, there is usually no sure way of predicting or comprehending why certain children are born with their unique capabilities and physical characteristics while others in similar circumstances are born under more favorable conditions.
Heart defects, blindness and deafness are self-explanatory. Autism and cerebral palsy are often mentioned in the literature but there is not always a clear understanding of what they mean.
Autism can be defined as a complex developmental disability that typically appears during the first three years of life. It is not a disease; it is more of a unique outlook on life. Most people with autism experience impaired social interactions including problems with verbal and nonverbal communication, and in more extreme cases, abnormal responses to sounds, touch, or other sensory stimulation. Some also have limited activities and interests-sometimes on a genius level-often in the area of music and math. "Rain Man," starring Tom Cruise and Dustin Hoffman, the first movie to bring wide publicity to autism, is based on the life of Kim Peek, an autistic man with a photographic memory and the ability to accurately calculate complex sums in his head. He currently works as payroll accountant for a respected company.
Cerebral palsy refers to any one of a number of neurological disorders, usually appearing in infancy or early childhood that permanently affect body movement and muscle coordination but do not worsen over time. Cerebral palsy can't be cured, but training may improve a child's capabilities.
Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better the chances children have of overcoming developmental disabilities by learning new ways to accomplish the tasks that challenge them. One of the more well-known sufferers of cerebral palsy is Christy Brown, who grew up only able to control the movements of his left foot. He later became a painter and famous Irish writer through his book "My Left Foot", which has also been made into a movie.
In Ukraine, the current policy on the disabled is a hold-over from Soviet times: community level interventions that ignore actual needs by setting up local establishments to decide matters such as schooling, health care needs, hospital stay requirements and summer holidays for all official disabled children in their jurisdiction (regardless of form of disability or desire for such interventions). The other policy in place is aimed at keeping normal people from feeling uncomfortable with the sight or need for interaction with handicapped humans. Thus, people with serious physical and mental disabilities are confined to special facilities, usually on the outskirts of urban centers.
The government has taken the sacrifice of mothers into account in their disability checks and yet only offers them $1-2 compensation per month, despite the fact that they can no longer hold a full or part time job. Unsurprisingly, the depression rate among mothers of disabled children is incredibly high. One woman with a son who has a severe case of cerebral palsy said, "When I realized what had happened to my child, I wished I could take my own life and that my child would die." However, the biggest fear of all the mothers interviewed for this article was not financial (though stretching $72 dollars a month to cover all food, clothing and utility costs is no small feat). Instead, the interviewed mothers repeatedly expressed fear for the future of their child once the interviewee has grown too old to provide care.
Sadly, this fear appears to be well-grounded. Once a primary care giver becomes too old or is no longer able to care for the child (who is usually a fully grown adult with few skills but a great deal of frustration with life due to a complete lack of childhood education and a generally bland existence), other family members are more likely than not to pass the child/adult to one of the aforementioned institutions. Mothers regularly hear horror stories concerning people who are admitted to these places after a lifetime of living at home and who, according to the stories, completely give up their will to live and pass away within a number of weeks or months.
The greatest progress on problems in this area in post-Soviet times has come from parents who have realized that no one is going to help them or their children, and have begun taking matters into their own hands. These parents have started to learn more about their rights, are uniting into non-profit organizations and have started collaborating with foreign organizations in order to fight for a better life for their children.
For example, the mothers of handicapped children in Boyarka founded a charitable organization, ARK, which has begun work towards their dream of building an educational day care center. Varvara Konin, founder and director of ARK, said: "Our plans for a rehabilitation center for our mentally incapacitated children will allow us to provide mental and social development so that these children may lead meaningful lives. We hope to make the center as financially self-sufficient as possible as the children not only work for themselves but also prepare to lead more self-sufficient lives."
One unique avenue of the center's work has been development of a quilting program. "Many of our disabled people are making patchwork quilts with the guidance of their parents as part of their therapy. Currently we hold bazaars and exhibitions where their products are sold to help pay for their expenses," Konin said. Over the past three years, ARK has held over 15 exhibitions in Kyiv and Boyarka. Some involved only local crafters while others included exhibitors from all over Ukraine.
ARK hopes to establish a Ukrainian Quilting and Craft Association to take part in international exhibitions and to open a retail shop where the work of members could be sold to benefit ARK's charitable activities. ARK plans an International Quilting Exhibition in Kyiv, September 1- 11, in the Lavra gallery at 17 Sichnevogo Povstannya
St. Admission is free.
Persons interested in the work of ARK may learn more at the Internet site http://www.ark.org.ua/ or by sending e-mail to KovchegOrg@inbox.ru
|
