In the Shadows of Mentally Disabled Siblings
BUENOS AIRES, Apr 6 (IPS) - "He's the favourite. I always have to let him play," complains a boy with a mentally disabled brother. "Will she have to come live with me?" is a common worry among siblings of the disabled.
A new book published in Argentina containing personal accounts and anecdotes from the brothers and sisters of people with mental disabilities shows that they often feel isolated or neglected in their families, worry about the future, and feel overly pressured to excel.
"Hermanos de personas con discapacidad. Vivencias y apoyos" (roughly "siblings of the disabled; experiences and support" was published by the Asociación Amar ("amar" means "to love" in Spanish), an association that works with the mentally disabled.
The accounts compiled in the book were collected in workshops held in a dozen Argentine provinces over the space of three years. Some 900 siblings of the disabled, ranging in age from six to 60, took part in the workshops.
A special edition set to come out in May, to which IPS had access, will include an appendix in which the authors explain to other professionals how to design the workshops. The book will be distributed throughout Latin America and Spain.
Silvia Lanciano, executive director of the Asociación Amar, told IPS that professionals who work with the disabled began to realise that no attention was paid to their siblings and the specific challenges and problems they face. "These people were completely ignored. They weren't taken into account and they received no support," she said.
The workshops brought together the siblings of people with mental disabilities, such as Down's syndrome. "There are siblings who overprotect their more limited brother or sister. Others feel they are under pressure to achieve because they don't have a disability. And many feel shame or guilt," said Lanciano.
The book's authors, psychologists Blanca Núñez and Luis Rodríguez, say it mainly targets parents and professionals who are interested in gaining a better comprehension of, and providing better support for, siblings of the disabled.
"Support for the families should not be limited to meetings or workshops with parents," say the authors. "There is little understanding of the affective needs of the siblings, which are practically ignored by the adults in their lives. There is an erroneous belief that they are more able to deal with things, and they are pushed into the background by the demands of the child who faces more limitations."
Some of the children in the book complain about the "privileged" status of their disabled siblings: "He's the favourite. I always have to let him play"; "I get mad when he hits me but I can't hit him because mom scolds me."
The younger children also suffer from discrimination. "It bothers me when they call my sister 'enfermita' (diminutive of 'sick one')," says one of the children.
"Once they called her 'mongólica' ('Mongoloid'), but they didn't call her that again because I fought them," says another.
"When you're with your friends and you say something they think is dumb, they call you 'mongólico'. A lot of kids use it as an insult. I don't like that," says the teenage brother of a boy with Down's syndrome.
The authors point out that parents tend to be overprotective of their disabled children and stricter with their other children, who they consider to be "more mature," "more independent," "more grown-up" or "capable of reasoning," even when they are very young.
An adult brother recommends to parents: "don't expect from your healthy child what your disabled one can't give you."
Brothers and sisters often help with the caregiving. "He goes to the same school as me, and at recess I watch out so they don't leave him out, and so he's not left all by himself," says one girl. "I have to take him to the birthday parties of my classmates, and then I have to stay by him, to take care of him."
It is important for parents to understand that while they have support from the centres where their disabled children receive care and attention, their other children are often isolated, confused and sometimes left without the information they need to fully comprehend the situation, say the authors.
"I didn't understand. My brother went to so many doctors and specialists that I thought he was going to get better," says a 57-year-old man whose brother was born with Down's syndrome.
"I felt that he might have been healthy if I had treated him differently," confesses another man, age 51.
When they are little, siblings are often afraid that their brother or sister could die of their condition, or that they could "catch" their brother or sister's problem. The parents, completely dedicated to the child with limitations, often sideline their other children.
"When my mom died, my sister was a complete stranger to me. I didn't know what doctor she went to or what medicines she took," says a 41-year-old man. According to the book, nine out of 10 teenagers and adults who took part in the workshops expressed worries and fears about the future of their disabled sibling.
"Will s/he have to come live with me?" is the most frequent question. They also worry about what would happen if they were unable to support their disabled brother or sister, or whether their spouse would accept them. And it is not easy, they say, to talk about the issue with their parents, to prepare for the day when their mother and father are not around to care for their disabled son or daughter.
The siblings also feel bad for their parents. "My mother gave up her life for my brother," says one woman. "We were unable to enjoy a mother who enjoyed life," says another. Many assume that their parents are not happy, and try hard to compensate by doing things that please them.
The authors show that some siblings of mentally disabled children even doubt how much their parents love them. "I can't remember anyone in my house ever looking at one of my school notebooks," says a 35-year-old woman.
"I could never be alone with my mom, and I have doubts about whether she liked to be with me. She never showed it if she did," says a 37-year-old woman.
But the siblings also stress that despite the negative aspects, the challenges faced in having a disabled brother or sister strengthened them and enriched their lives. "My little brother taught me that if you can't do one thing, you can do another. He taught me that you shouldn't just think about what you can't do," says a teenage girl.
***** + Asociación Amar in Spanish (http://www.asociacionamar.org.ar) + VENEZUELA: Museums Throw Open Their Doors to the Disabled - 2007 (http://ipsnews.net/news.asp?idnews=37750) + RIGHTS: Objects of "Charity and Pity" No More - 2007 (http://ipsnews.net/news.asp?idnews=37145) + ARGENTINA: Digital Library for the Blind (http://ipsnews.net/news.asp?idnews=36901)
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