“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, July 16, 2008

More thoughts on Ukraine

I wanted to share some more of my experiences with families of individuals with disabilities in the Ukraine. Kathi and I were given the privelege of meeting with families individually across the 2 weeks we were working in camps. We each probably met with 30 or more families in individual consultations, discussing their experience with a disabled family member and with the social consequences of such life experienced in their villages and cities. Below are just a few examples of the discussions we had with people half a world away.

-There was the situation I already related here of the family where the father is not present, the teenage son is rebellious, the daughter with intellectual disabilities and her younger brother live together at home, and because of the isolated nature of the village, the brother is mimicing the behaviors of the sister...the mother was desperate
-There was the teen with down's syndrome whose friends have taught her to say that she is having sex with any man she happens to meet to the chagrin of her parents and the men
-There were the children with cerebral palsy who are walked around in front of their parents all day. They lack balance to be able to walk themselves but the parents walk them with the understanding that it will result in the child being able to walk by her/himself
-There was the severely disabled girl with cerebral palsy pushed around in a stroller, whose wonderful mother is trying to get her to talk
-There was the bright young man with cerebral palsy who is in a wheelchair with small wheels (many are) which causes him to be totally dependent upon others for movement unless he crawls across the floor
-There was the woman living in poverty with the high functioning autistic son with significant artistic ability wondering how to encourge his gifts in spite of her social situation
-There was the family with twins, both having mild cerebral palsy, who wondered whether their children would ever walk
-There was the man with intellectual disabilities who "ruled the roost" to the frustration of his parents who empowered him in his refusal to do anything
-There was the sweet man with intellectual disabilities who could be easily victimized and was the butt of humor in his village to the sadness of his family
-There was the boy who was doing very well after surgery to correct a physical disability, but who also lived with a sister with severe mental illness who the family felt stigmatized them
-There was the sweet girl with down's syndrome who was the natural center of attention everywhere she went because of her endearing qualities
-There was the sweet man with down's syndrome who lost his parents and is now living with his aunt who can find nothing good about him and was constantly picking at him about nonsensical things
-There was the literally, brilliant boy with spina bifida, who was totally in control of his young mother who was at her wits end
-There was the group of women asking if I would please send the drug from America that would raise their children's IQ so they would no longer have intellectual disabilities
-And there was the small group of fathers who shared their struggles, but also their total commitment to their children and their families. I told them they were like rare gems and I was blessed to be with them.

There were also other stories I could share. So you can see that the issues are very similar to those of parents in America. Kathi and I did our best to confront parents when we needed to, help parents to set limits, give them ideas for developing communication, and facilitating independence, to help to think past traditional notions of work in any setting toward different ways of looking at work and life and contributions to the family and community by family members with disabilities. We also tried to praise parents for the stands they have taken in their communities and their efforts to raise their children in difficult social situations of divorce, ostracism and misunderstanding.

I can tell you it was like no other international experience I have ever had. I feel like I have some understanding of people in Ukraine and of their day to day life experience. I was so blessed to be confided in, and to be listened to. The families made me feel like I understood them and had something to contribute to improving their lives.



Anonymous said...

I can believe all of this must have been an awesome experience; knowing how your work affected the lives of so many and experiencing the way these encounters affected you in return.

I can't help but wonder what will happen next in your relationships with these families. It seems to me you have planted a mission field to which someone must return.

I mean, I would expect that I would feel tremendous frustration about not being able to complete a work so wonderfully begun.

Is that a frustration for you? I know where your hope comes from for the continued success of this mission, still, what will happen next?

Anonymous said...

Some of the stories seem so sad. Although I do not have a child with a disability, I still cannot imagine the struggles parents go through mostly put on by the pressures and judgements of the people in the society around them.

Always worrying about wanting to "fix" your child seems so much more difficult than just loving and accepting them for who they are.

It must have been a blessing being able to at least give some of these families hope. There has to be more of you out there!! :)