Author:
Mariia Kucova
People with Down syndrome have the right to feel anger, attend regular schools, and engage in employment in the open market. On the occasion of World Down Syndrome Day, we offer to learn more about them.
For this purpose, we interviewed Tetiana Pavliuk, Vice President of the All-Ukrainian Charity Organization "Down Syndrome".
What Exactly Is Down Syndrome, and How Many Ukrainians Are Affected by It?
Down syndrome is not classified as an illness but rather as a genetic condition resulting from an additional chromosome. Given the impossibility of "curing" the syndrome, the primary objective is to ensure the social integration of these individuals. However, there remains substantial work to be done in this regard, particularly within Ukraine.
According to the World Health Organization (WHO), Down syndrome occurs in approximately every 700th conception. Speaking about the situation in Ukraine, about 200–250 babies were born before the large-scale invasion per year.
The Center for Public Health of the Ministry of Health provided us with data indicating 150 newborns for the year 2022. However, information from Zaporizhzhia, Kyiv, Luhansk regions, and Crimea is absent from this dataset. I don't have an answer as to why these data are missing. Some regions may be affected due to occupation,
said Tetiana Pavliuk.
said Tetiana Pavliuk.
Stereotypes Surrounding Down Syndrome and the Role of the USSR
Despite significant advancements in understanding Down syndrome, stereotypes still exist. It is believed that such individuals are contagious and incapable of learning and working.
According to Tetiana Pavliuk, this unfortunate legacy stems from the Soviet era when people with disabilities were simply ignored because they were inconvenient for the system. The derogatory term "down" likely originated from that time.
In contrast to the derogatory label, parents of children with Down syndrome began using the term "sunshine." After all, there is an opinion that people with Down syndrome do not possess an "evil gene".
Perhaps they do not harbor deep malice, but they have the right to feel anger, and we should not deprive them of that right,
emphasized Tetiana Pavliuk.
emphasized Tetiana Pavliuk.
To combat stereotypes, since October 2023, the "Down Syndrome" Charitable Organization has launched an informational campaign titled "Why Not 'Sunshine'". According to the organization's vice president, if society understands what Down syndrome is, accepts such individuals, and is prepared for their social integration, parents won't feel the need to hide behind the term "sunshine".
The Main Challenges for People with Down Syndrome Today
While significant progress has been made towards integrating people with Down syndrome into society, challenges persist. Inclusive education in schools and kindergartens, social services, and medical protocols have been established, but the public sector remains a driving force for change.
Of course, not everything is as perfect as we would like it to be, as the educational process itself in schools needs improvement. Teachers face difficulties in adapting programs and organizing classes when children with special educational needs join. Our focus now lies on developing projects to support educational processes,
noted Tetiana Pavliuk.
noted Tetiana Pavliuk.
Currently, the main challenges for people with Down syndrome concern adult life, including post-school education, employment, and autonomous living.
The "Down Syndrome" Charity Organization has ventured into supported employment, with successful outcomes. Young people are now working in various cities across Ukraine, and new initiatives are emerging. However, these are still isolated cases. To make this practice widespread, it is necessary to:
- start working with children from an early age;
- combat society's prejudices towards people with Down syndrome;
- establish accessible support services for people with disabilities at both work and in independent living at the state level.
Autonomous living for people with Down syndrome poses a separate challenge for families. Currently, in Ukraine, there are only supported living facilities established by the public sector.
But the public sector operates on project-based funding, which has a beginning and an end. Supported living, however, requires continuous support. The state and local authorities must be involved,
explained Tetiana Pavliuk.
explained Tetiana Pavliuk.
The significance of this social demand cannot be overstated, as after turning 18, people with Down syndrome essentially remain within the four walls of their homes, leading highly restricted lives. Equally challenging is the situation for parents and caregivers of people with Down syndrome, as they no longer have the right to "step off the track".
We hope the state will support these families so that young people with Down syndrome can live separately from their parents or relatives,
concluded Tetiana Pavliuk.
concluded Tetiana Pavliuk.
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