February 3, 2013
February 3, 2013
JÉRÉMIE, HAITI – Juna Dol, 39, is unable to stand up straight. She can only push her body forward in a crablike walk through Jérémie, a small coastal town in southwestern Haiti.
“I have been handicapped since birth, just like my brother,” Dol says.
Dol and her brother were born with a genetic disorder, which doctors were unable to diagnose.
“Despite my handicap, I became pregnant,” she says. “I was not ready for that pregnancy. It only increased my suffering.”
She was living with her sister, but her pregnancy caused a conflict between them.
“My sister refused to keep me at her house any longer and put me out into the street,” she says.
Because of her disability, Dol was physically unable to deliver the baby, so she needed a cesarean section. The Haitian Health Foundation, a U.S.-based nonprofit organization located in Jérémie, paid for the procedure.
“But what made matters worse was that after the baby was 4 months old, her father left me,” she says. “Now it was up to me to take care of her.”
Dol says she is doing the best she can to raise her daughter, who is now 14 years old and in sixth grade.
Haitian Health Foundation pays for her housing and contributes 500 Haitian gourdes ($12) a month to contribute to her livelihood. But she says that she doesn’t have enough capital to launch a business as a seamstress, the only trade she knows.
People with disabilities living in Jérémie say they battle injustice daily and struggle to support themselves. Several have formed a local support group to defend their rights, but they say that it’s not enough. A government bureau provides some assistance from the capital, but there is no local delegation in Jérémie. Disabled citizens call for more vocational training so that they can get jobs to support themselves and their families.
More than 8 percent of Haitians are disabled, according to the Bureau du Secretairie d’Etat a l'Intégration des Personnes Handicapees, the government bureau charged with integrating people with disabilities.
Yves Louis, 51, the president of Rassemblement des Personnes Handicapées de Jérémie, a local group of disabled people, says there has never been a census in the greater Jérémie area to see how many disabled people there are. He has asked local government officials to conduct a census, but they have not so far.
Disabled people in Jérémie say that life is hard.
“In Jérémie, people who are handicapped live a very hard life,” says Louis, who lost his foot in 2009 to filariasis, an infectious, tropical, parasitic disease caused by roundworm. “They get no assistance or training at all. There are people willing to help, but they don’t have the means to do so.”
Disabled people in Jérémie live without hope, Louis says.
“But they have to continue to live,” Louis says, “because they are already born, despite the fact that there is no help for them at all.”
A young boy helps to lead Nicolas Joassaint, 62, who holds a long stick in his hand.
Joassaint says he has been blind since 1993. He was swimming in the ocean when his eyes grew hot and began to itch. He went to the hospital, where the doctor gave him a shot.
A week later, he could not see at all. He says he doesn’t know what caused his loss of sight.
Joassaint cares for two young boys whose parents died. He survives by begging so that he and the boys have something to eat.
Louis supports his wife and their seven children by working as a handyman at one of the schools of nursing in Jérémie. He says that there is a lack of training and assistance for disabled people.
They are also more vulnerable to human rights violations, he says.
“In 2010, I was attacked by a young woman who had a problem with one of my kids,” he says. “That woman threw a rock at me, which hit me in the head, and I was bleeding. When I went to court, they arrested the woman. But it was not a real arrest, because after two hours that same day, they let her go. There is just no justice.”
He says there is also a lack of respect for the disabled in society.
“There is no social justice for us either, the way they treat us in the street without any kind of respect,” he says. “That is another reason we cannot get assistance or support.”
Louis and several other disabled people in Jérémie formed a group called Rassemblement des Personnes Handicapées de Jérémie in 2009 to help fellow people with disabilities to defend their rights.
Louis says the group has 117 members, most of whom have lost one leg or both legs. Dol and her brother are both members. It functions as a support group, aiming to boost self-esteem and morale among its members. They meet every second Sunday of the month at Hortensius Merlet School.
But members say that more needs to be done.
“For three years now, I am in a group that is organized for people who are handicapped,” Joassaint says. “But as of yet, they have not really helped me.”
Joassaint says he used to make a small contribution for activities for members of Rassemblement des Personnes Handicapées de Jérémie, but the group hasn’t organized anything as far as he knows.
“In January of 2012, they have asked each handicapped person to pay 100 Haitian gourdes [$2] for a badge,” he says. “But we still do not have a badge.”
Badges identify members of groups and organizations in Haiti.
Beyond the group, there is little assistance for people with disabilities in Jérémie.
Gregory Jean Louis, a 27-year-old secondary school student who is not related to Yves Louis, lost his left hand after falling out of a mango tree when he was 12. His family took him to an herb doctor, who reset his wrist and tied it up.
After several days of increasing pain, his family took him to the hospital. But it was too late to save his wrist and hand, which had to be amputated.
“The problem I have is that I often hear things said on the radio how they want to help handicapped people,” Gregory Jean Louis says. “But everything that is being done is always done only in the capital.”
A presidential decree created the Bureau du Secrétaire d’Etat à l'Intégration des Personnes Handicapées in 2007 in Port-au-Prince under the Ministère des Affaires Sociales et du Travail, the Ministry of Social Affairs and Labor. The bureau aims to integrate disabled people in all spheres of social life. But there is no branch in Jérémie.
Yves Louis says he used to go to Port-au-Prince to participate in seminars organized by the bureau to help disabled people. At these seminars, he used to talk about the way people with disabilities live and how that they needed help in areas like Jérémie.
He received 25,000 Haitian gourdes ($600) from the Bureau du Secretairie d’Etat a l'Intégration des Personnes Handicapees to help his group in Jérémie and to pay rent for a meeting space.
But he says that the money was not enough, so he decided to split it equally among the 27 people in the group so they could start individual small businesses as street vendors.
Some local organizations offer financial support and employment opportunities to people with disabilities.
Dol’s brother, Pierre Ronsa Dol, 38, has the same genetic disorder as his sister. He can’t straighten his legs and is only able to hop from place to place.
The Haitian Health Foundation provides him and his wife and child with housing.
He works at the Center of Hope, a health care facility run by the Haitian Health Foundation in Jérémie for people with intellectual and developmental disabilities. There, he cuts weeds and clears away brush, earning 4,000 Haitian gourdes ($95) a month to support his family.
But others say they need more help.
“We handicapped here in Jérémie do not get any kind of help,” Gregory Jean Louis says. “That is why I would like to ask those who are in charge to think about us in the provinces too, create employment for us so that we can work according to our abilities.”
He and others with disabilities say that employment would help them most.
"The situation of disabled people could be improved by creating work and jobs for them that they could do despite being disabled,” he says. “It would also help if we had a center for the disabled in Jérémie that could provide moral, economic and physical support for them."
Joassaint also says that he needs monetary assistance and job opportunities.
Skills training is crucial for disabled people to become self-sufficient and improve their lives, Yves Louis says.
"In the future, the way the situation of disabled people can be helped is by training handicapped people in skills that they can do to be able to work,” he says, “where those in charge think more about what kind of life handicapped people lead and give them the means so they can lead a better life."
Editor’s note: Renate Schneider, translator for the Haiti News Desk, was formerly the director of the Haitian Health Foundation’s Center of Hope. She has not had ties with the center since 2009.