Violated for having autism
As dawn neared and the sun peered through clouds that covered the village of San Miguel in El Salvador, Oscar Nosta wondered if it was morning. “It must be morning,” he thought to himself. For three years it was a routine. Nosta would press his left eye against a crack in the wall that allowed him to feel the mist from the Rio Grande de San Miguel. As each night passed, Nosta averted his worst nightmares. During his days he hoped for miracles; with the darkness of night he wished for the morning sun to come back. He barely remembered what people looked like. When the door would open the glare was so bad he could only make out a silhouette. Even then, human contact lasted seconds. Either he was hosed off for his weekly rinse or he was served stale bread and runny rice.
Nosta wasn’t a prisoner, but it may certainly seem as though he committed some type of heinous crime in order to receive this kind of treatment. While he was never charged with anything, he was serving time for autism – a diagnosis that was foreign to himself, his parents and health officials as early as 1992. For the first five years of his life it was easy enough to make excuses, cover it up, but eventually Nosta was taken to an institution where his parents were told he would receive the appropriate treatment. For seven years Nosta would be bounced around El Salvador without his parents having knowledge of where he was or what he was doing. He could do a lot of what was asked of him—tie his shoes, eat his food, wash his face—but when it came to words, Nosta couldn’t speak them. At age 12, with his country never fully recovered from turmoil and a civil war, Nosta was put away behind a cold steel door. The next three years he did all he could to stay awake at night while he was subjected to rats nipping at his feet and insects crawling all over his skin.
His mother, Adelina, explains that she fought everyday to find her son. She was alone, losing her husband and brother in a tragic slaying. She was poor and still had to provide for her two younger children. It wasn’t until an activist living in the area, who had heard about her struggles, approached her. With help she finally found a way to her son. Oscar was released into his mother’s care in 2003 and Adelina brought her son to a relative living in Hermosa, N.M. Adelina’s relative who asked to remain anonymous to protect Oscar and his new identity, adopted him and has been living in the United States since. Now at age 21, he’s speaking through the help of a computer and telling his story to anyone that will listen.
Oscar is not alone. Even worse, El Salvador is just one of many countries that overlooks the developmentally disabled population. In 2004, Mental Disability Rights International (MDRI) a human rights group with a focus on the rights of disabled people all over the world traveled to Paraguay where they found two young boys, Jorge and Julio, both suffering from autism and locked away behind bars at the Neuro-Psychiatric Hospital of Paraguay. The two boys were naked and had been detained in a 6’x6’ isolation cell for five years.
MDRI reported: “Lacking toilets, Jorge had been forced to urinate and defecate in the very space where he was to sleep, eat and reside. The cells were completely bare, save for a wooden platform jutting out from the cell wall. Holes in the cell floors that should have functioned as latrines were crammed and caked over with excrement. The cells reeked of urine and feces, and the walls of the cells were smeared with excrement. Jorge spent approximately four hours of every other day in an outdoor pen, which is littered with human excrement, garbage and broken glass.”
“We were told he was in the cell because he was violent,” says Laurie Ahern, MDRI’s chief operating officer. “When we had the director open the cell door, he was anything but violent.”
“Jorge had entered the institution with clothes on,” says MDRI Executive Director, Eric Rosenthal. “He was limited in speech, but had used words before entering. Years of abuse, neglect and torture led to his regression.”
After MDRI’s initial visit, led by Alison Hillman, the wheels began turning. They immediately filed a report of their findings with the Inter-American Commission on Human Rights (IACHR). Shortly after the release of their report, CNN International aired a story about the institution, and on Dec. 31, 2003, Paraguay President Nicanor Duarte Frutos watched in horror at the injustice in his own country. “He went to the institution that same night,” Rosenthal says. “He asked the director to eat some of the food he had been feeding his patients, and when he refused, he was fired.”
What followed was the release of Jorge from his cell and a monumental settlement between MDRI, the Center for Justice and International Law (CEJIL) with the Paraguayan government aimed at ending the improper detention of hundreds of people in the country’s state-run psychiatric hospital. Filed with the Inter-American Commission on Human Rights of the Organization of American States (OAS), the settlement was the first agreement in Latin America to guarantee the rights of patients to live and receive mental health services in the community.
Four years later, the same institution is still keeping some of its patients in cells. “The institution has not been transformed,” Rosenthal says. “In the settlement they agreed to go from 468 patients to 150 patients at that facility. They tripled their mental health budget, but we couldn’t get them to agree not to lock patients in cells.”
Shockingly, Jorge was one of the lucky ones. An emergency injunction was filed with courts in Paraguay, where MDRI reported that his condition was dire and his release from the cell would be life saving. A precautionary law that was in place worked in Jorge’s favor. “What it came down to was the judge seeing the photos of Jorge naked in his cell,” Rosenthal says. “That put it over the top and changed everything. He even said so.”
Since his release, Jorge is still at the institution, but is now working with his mother on a daily basis. After she was reunited with her son, Jorge’s mother took a job at the Neuro-Psychiatric Hospital. Even with the knowledge of her son’s living conditions, she could do nothing. “You have to understand these are people who live in the worst conditions,” Rosenthal says. “They are poor and told by doctors to put their son there and go on and take care of the rest of their family.”
Julio, the other boy found in 2003, wasn’t as fortunate. He still remains in a cell at times. MDRI has not had the same success at getting him the help he needs, but have not given up the fight. MDRI has staff and experts stationed in Paraguay who are developing advocacy groups to work with them every day. While Julio’s life may be at stake here, three other patients died in December 2007 of unknown causes. “There is a long way to go,” Rosenthal says. “This is not acceptable.”
Courtesy Spectrum Publications