Quality of Life for disabled orphans: isolation

Pulling up to the orphanage, I was surprised that this was it. I could barely make out the tiny sign explaining the "internat" (orphanage). It struck me that these buildings were constructed to hide and isolate these children from the communities surrounding them. Out of sight, and out of mind.

Good quality of life varies from person to person, however, I believe that a good life is being a successful human in harmony with my surroundings. I know this may sound very Buddhist/zen to you, but I feel its a good summation of all the different components which make up a good life.

Now, when I start to measure up an orphan's life to my standard of good living, I observe many incongruities. The isolation of children from a community halts the act of being in harmony with one's surroundings. Growing up in an isolated environment shatters a child's capability to attach to other human beings. Also, unable to interact in society, orphans lack an understanding of certain norms and behaviors. As adults, these children could likely be victimized by manipulative individuals reinforcing their inability to form attachments and drive them to further isolation.

Isolating orphans has very dire effects on children with mental and physical disabilities. By keeping disabled people hidden, individuals do not have to interact with disability and lack of interaction leads to ignorance. People become fearful of what a person with disabilities is like. When Dzherela organization built dorms for adults and teens with mental disabilities, neighbors protested. People were afraid that the new occupants would cause trouble and upset the peace.

Fear builds in the place of acceptance. Maybe this is why I chose to write about isolation as my first analysis of the quality of orphans' lives. Parents who are fearful that they cannot care for a child with special needs give that child up for adoption. Many Ukrainians voiced their concern that people with disabilities are mocked and so are better off protected from the mainstream.

A disability movement has already begun in Ukraine, but I want to see more. I would love for acceptance to take the place of isolation.

My thoughts on problems facing orphans: Stigma

When I first visited the Ukrainian orphanages, I was shocked by the status of children. I think that the conditions were so difficult to comprehend mentally that I had difficulty accurately processing my experience. During my Fulbright, I had the benefit to reflect on my initial experience and more fully understand the larger picture. I benefited from meeting with key individuals who dedicate much time and effort to promoting the status of these children and acting as their advocates. Our discussions and personal communication has given me more insight on the topic as well as better understanding of what is going on and how things can change. I feel that as a student and not a specialist, I cannot make assertions concerning the exact medical and mental state of disabled children in orphanages but I can share with you my journey so far as well as my concerns, hopes and reflections.

One of the first things I noticed when visiting Ukraine, was that I saw no one with disabilities. I saw a lot of elderly people who had difficulty moving about, but no where did I see a person with a physical disability easily navigating Kyiv. There is definitely a stigma in Ukraine that having a disability is some sort of embarrassment. I remember visiting my family in L'viv a few years ago and we were leaving my aunt's apartment. When we got outside, someone yelled up from one of the apartments. My aunt waved and chatted with her neighbor yelling down to her. She later told me that this neighbor has a son, who is wheelchair bound and rarely leaves his apartment (the apt lacks a functioning lift).

I remember that moment so pointedly because I felt like the things preventing that man from interacting with his city were 1) a building that was not handicap accessible and 2) his parents' fear that he would be laughed. I'm not blaming his parents for not trying hard enough to overcome these obstacles, but its the overall way of thinking that gets to me, that in cases such as this young man's its somehow better to avoid attacking the problems in order to protect the person with a disability. I see the reasoning in this way of thinking, but I feel that maintaing this opinion, is like mainitaining this vicious cycle, where you are afraid to be open with disability and so you hide it and in turn, this makes it even harder to be open about disability.



The stigma related to the difficulty of being disabled also shatters the hope of leading a fulfilling life as a person with mental and physical disabilities. I dealt with this attitude among orphanage caretakers who did not see the purpose in investing time and attention to children who were bedridden or who had trouble speaking. The caretakers felt like it was a waste of time to communicate to these children because nothing would come from it; the child would remain mute or bedridden until he/she died. What a fatalistic view? But, I think they thought that because they did not see children with disabilites enjoying life.



One organization I worked with tried to remedy this problem by sending orphanage staff and caretakers for training at a center in Kyiv which works with children with mental disabilities. During these training sessions, caretakers and orphanage teachers, learned techniques and methods to help and teach these children. But during this, they also saw how the children at the center were functioning well. The center I am referring to is called Djerela Center in Kyiv, they support families with children with mental disabilities, such as Down Syndrome, and their services are basically free- I plan on doing a blog entry dedicated to this center. You can read about the director of the organization, Raisa Kravchenko, at the Insititute for Sustainable Communities: Coalition Stories page

http://tools.iscvt.org/advocacy/stories_from_the_field/coalitionstories



When the orphanage staff returned to the orphanage, they brought their new skills and new ideas. They approached each child with more care because they believed in the child's developement and progress. This change in perspective had an obvious positive impact on the children. Fighting these stereotypes is a huge but essential hurdle in overcoming the fear that hinders the development of children with mental and physical disability.