Sometimes, in our current discussions of human variation in the age of genetic manipulation, it is easy to forget the central role of the environment in shaping human behaviour. This video from United Nations Television provides a powerful example of institutional dehumanization and of the power of families and communities to overcome dehumanization.
A transcript follows the cut.
You can read about Jorge’s story here.
Thanks to the United Nations and Mental Disability Rights International for their excellent work on this.
For the last 15 years, Julio Brotelo has been waking up behind bars. He’s only 23. His crime? To have a severe form of a little understood condition: autism. His sentence: to be locked away from a society that didn’t know what to do with him.
24-year-old Jorge Bernal is also profoundly autistic. He, too, was locked away as a little boy. But for all they have in common, their stories have turned out very differently.
When Julio’s mother abandoned him as a baby, his grandmother Sinforosa Domingez was left to raise the severely mentally disabled two-year-old:
“I loved him very much. I saw him grow, but I suffered a lot during that time when he had his attacks. One day he fell in the bath and crashed his head. Things were always happening to him.”
Struggling to cope, she resorted to tying Julio to a tree to keep him from escaping. At 7 years old, Julio was taken away from her and was put into the state’s only psychiatric hospital. At first, he was cared for individually by nurse Lucilla Contrares, seen in this footage, shot at the time:
“He was such a tense boy. Hyper-active, he’d cry, he’d shout, he used to break everything. He used to hit himself against the wall. When he used to run to a corner, shouting and crying, I’d say, ‘come here, Juli, my baby, come here to my arms.’ And he’d come and put his head on my lap and he’d calm down. I would stroke his head and pet him until he was calm. We’d spend hours like that.”
When the funding set aside for his care ran out, everything changed. He was taken from Lucilla and put into the men’s section where, for his own safety, he was locked up alone.
Jorge Bernal’s story began in another poor household in Asuncion. Like Julio, Jorge has an extreme form of autism. For some, this condition makes them unable to relate to the world or communicate with people around them. For others, like Julio and Jorge, it can reduce them to a state of lonely despair and agitation. After his mother, Blesse de Aravalo gave birth to her sixth child, she could no longer cope with Jorge, who used to run away constantly. In desperation, she turned to the authorities for help. The only solution, they told her, was to put Jorge in the institution:
“They told me there was no help available, but I could go and visit him when I wanted, ‘because your son is never going to be useful to society,’ they said.”
In 1996, 12-year-old Jorge was also admitted to the neuropsychiatric hospital and put in the cell next to Julio. For 23 hours a day, they were locked away alone, in filthy cramped cells. This is where Alison Hillman, from the organization Mental Disability Rights International, found them in 2003. She shot this footage of them:
“They slept and ate and resided in the very same space that they defecated and urinated. They were taken out of their cells to be hosed off. When people are locked away from society, they’re really invisible.”
Manfred Novak is the UN special reporter on torture:
“I think it is very, very important for those who are excluded, not just those with disabilities, the poor and others, are integrated into normal life. That is a major principle of human rights in general.”
In response to the human rights violations uncovered by Alison, conditions in the hospital have improved. But, although the authorities are looking for an alternative, Julio remains in a cell today.
Alison: “I think mostly it’s been a lack of resources and a lack of knowing what to do. People with disabilities have the right to be in the community and to receive the services and supports that they need to live in the community.”
While Julio’s future depends on money being found to pay for new, community-based care for him, Jorge’s torment ended 18 months ago. After 9 years in the institution, his mother was finally able to bring him home. Jorge has blossomed and re-learned the social skills he lost during his years in isolation.
Blesse: “I feel really good, because it’s like it was before. I’ve been living with the guilt of having put my son in there, but he came back and for me that was the absolute best. What I want now is to be able to give him the life he wants.”
This is Jill Fickling with United Nations television in Paraguay.