From Lima sin barreras
Press release # 11
Lima, August 27, 2012
Original in Spanish
The vicious cycle of poverty plus having a disability and even more poverty is the common denominator of the stories of people with disabilities who the state and the society do not include. Julio Chojeda Torres, 63, has worked as a translator at the Ann Sullivan Center in San Miguel for 25 years. Like all adults, he has a work schedule of eight hours a day. He lives in Cárcamo, in the Lima District, close to the malls of Las Malvinas and among marginalization and delinquency. The only family he has is his two elderly brothers of 76 and 79 years of age. He was close to losing his house when Cárcamo was a slum and the housing structures had no title deeds.
Chojeda was diagnosed with spinal muscular atrophy at age 17. Spinal muscular atrophy is a hereditary degenerative illness that causes muscle damage and weakness. Approximately four in 100,000 people have this condition.
Because of his condition, Julio became an English translator. To learn more about his condition, he began writing letters to various U.S. institutions and specialized medical magazines. He knocked on embassy doors and wrote letters requesting donations. This way, he learned English.
What does it mean to live with a progressive neuromuscular illness like spinal muscular atrophy (SMA), muscular dystrophy (MD) and amyotrophic lateral sclerosis (ALS)? Monday through Friday, a vehicle from the Ann Sullivan center picks up Julio at his house and takes him to work. If it weren’t for this, he would have to pay between 15 and 20 sols for a taxi to his job. He would spend 40 sols daily. “Sometimes, taxi drivers do not want to carry you, or they charge you more because they say they lose time,” Julio said. “You find many looks and attitudes of rejection in the street.”
“What happens when you live in a poor neighborhood, when you have a large family and the children do not get an adequate diet with enough protein? That child will live in a cycle of poverty. But if you add to that the variable of disability — disability impoverishes families,” Julio said.
For example, the electric wheelchair he uses at work was donated, as well as his walker. The price for this type of wheelchair, which dates from ’97, is 8,000 U.S. dollars. The appropriate creams he uses to avoid skin wounds costs another 70 to 80 sols. “Could a man with a minimum wage of 750 sols afford this?” Julio asked.
“We people with disabilities do not have physical barriers only. We do not have access to education, nor do we have the same rights. If we do not have the same rights, how can we compete as equals? In these conditions, we are not going to be able to have a job, and without a job, we are not going to be able to earn money and cover our basic needs, which are many due to our disabilities. We want to have the same rights and the same opportunities,” he added.
“I do not have medical insurance for my condition. The insurance from the state, as everyone knows, leaves us aside. Our system has not gotten better. If someone with this type of disability were to be born right now, living conditions will not be any better for them. Each individual can only depend on themselves to face it,” he said.