Dateline

On Friday we watched Dateline on TV and they had a story about Serbia and the care and treatment of children and adults with disabilities. People in Serbia are encouraged to give their children up to the state if they are born with disabilities. The only aid the state offers is a place in an institution where they care for the children. The doctors tell you that you will be shunned by your family, and the costs of caring for the child will bankrupt you, and that the institutions are a place where the children will be with other people like themselves. People with disabilities are shunned in society, even by other family members. They told the story of 2 people, one who did give up their child, and one who didn't. The woman who didn't give up her son with CP was divorced by her husband, abandoned by her family, and is only able to work during the 2 hours a day that her son goes to a special school. They live in a 1 bedroom apartment and she spends all day being the sole caretaker of her son. The man who chose to give away his son with DS never even looked at him, but has spent the last 8 years thinking about him. Dateline found his son in an institution where he spends about 20 hours a day in a crib and the only time he is out he sits at a table and plays with the same lego blocks. He never smiles or laughs, and he needs help walking. He is small for his age, but I don't know how much of that is the DS, and how much is from the lack of movement.

The conditions in the places are awful. Truly awful. Grown adults half dressed sitting on the floor in the hallway. Adults confined to cribs and their limbs contorted to fit in the space they are allotted. Children tied to the rails of the cribs for 4-6 hours, every day. One doctor in charge of a facility that houses 600 disabled people. A child banging on his ear until it bleeds. A community shower where people are lined up and hosed off. Walls peeling and cracking. Cemeteries on the side of the hill with simple wooden crosses marking graves where no service has been performed because there is no money to pay a preacher. Ann Curry touched one of the boys and she told the nurses she could tell that he knew he was being touched and she said that he cries after any of the infrequent visits his mother makes. How could she come and leave him there? The doctor was asked why he let Dateline in to see the condition. "Because no human should live like this." And that is where people are encouraged to send their children. Their poor helpless children. Because that is the best option they have. They don't know what they are doing, but they feel like they have no choice. How many of us do things because the doctor says to do it, that it is the best thing? No one knows what happens there. You know they don't get good therapists or good workers. Who would want to work in conditions like that? The government official who was interviewed said that it was a problem they have inherited from the previous government, and that it will take time and money- lots of both- to make it any better. But it's deeper than that, it takes changing people's perceptions and attitudes. If the people of Serbia shun people with disabilities that strongly, how can there be any change?

That could have been our son. I never thought I would be thankful in that way. I am thankful yet again for the way Justin was born, and now I am thankful for where he was born. I am thankful that I have the burden, whatever that means, of caring for my son. I am grateful for the pain and the tears and the joy and the hope. I could barely stand to watch the show, and yet I couldn't turn it off. Tears were streaming down my cheeks, and they are again as I write this. I am praying that there is a reason I saw that, and if I am supposed to be one of the ones who needs to help affect change, then I want that to be ready and willing. Like the doctor said, no human should live like that.