Siblings of mentally handicapped suffer - expert

BROTHERS and sisters of people with mental handicaps suffer emotional difficulties in later life, a psychologist says.

BROTHERS and sisters of people with mental handicaps suffer emotional difficulties in later life, a psychologist says.

Mr Jonathan Egan, who himself has a mentally handicapped brother, says adult siblings can find it bard to handle any emotions except positive ones because "throughout childhood they learned that it is not OK to be angry with a person who is disabled."

A meeting for brothers and sisters of people with mental handicaps was held in Dublin at the weekend and further meetings may be held elsewhere in the future, according to Mr Mark Harrold, who works as a psychologist with St Michael's House organisation for the mentally handicapped in Dublin.

The meetings arose from a recent conference in University College, Dublin, at which Mr Egan spoke. It was organised by the Psychology Society of Ireland learning disability group and the Centre for the Study of Developmental Disabilities.

READ MORE

Mr Egan says there are many positive aspects to having a brother or sister with a mental handicap. "Siblings of individuals with a learning disability report experiencing great pleasure when their brother or sister achieve small accomplishments," he says.

A higher than average proportion of such siblings enter the caring/healthcare professions "and they are known to take a higher level of responsibility for their actions."

But, he says, "there are also well researched findings which suggest a darker side to having a brother or sister with a learning disability.

"These include worry about what was wrong with their brother or sister, worry that they will become disabled themselves, anger at loss of parental attention and guilt for feeling this anger, embarrassment when with peers because of teasing, as well as embarrassment at their sibling's actions.

"One researcher found that 59 per cent of adults with siblings who had a variety of handicapping conditions reported the effect their handicapped siblings had on their family relationships as negative, while only 18 per cent perceived it as positive."

A trade union official Ms Veronica Cleary, told the UCD conference of her experience of taking the main responsibility in the family for her younger sister after her parents died.

Her father had believed that her sister should live with another member of the family when he died. But the other family members lived abroad and she and her husband lived in Dublin and worked long hours some distance from her original family home.

Her sister went to residential accommodation beside her sheltered workshop and thereby suffered the double loss of bereavement and of losing her home. Had she moved to the hostel earlier, it would have been much less traumatic, she said.

"I am sharing this experience with you to appeal to parents to sit down with siblings to discuss all the options while parents are still in good health, and all the options must include and respect the needs and domestic circumstances of the other siblings in the family as well as those of the parents and handicapped sibling."

She praised the frontline staff who look after her sister but was very critical of the people who run the organisations and agencies dealing with mental handicap.

"Power is invested in them, instead of being based in the families and handicapped people that these organisations are supposed to work for. Too often, we view what they do as a compliment and a bonus instead of as a right." The organisations themselves, she said, fail to consult families or handicapped people.

Yet, she said, "we pay the taxes and fundraise to pay for the services the authorities provide for our handicapped relatives. We keep them in a job, as much as they provide those services for our relatives."

She had to fight the organisation which had been dealing with her sister when it decided, without consultation, to shut down the hostel in which she lived.

She began a campaign which won a reprieve but it turned out to be temporary and her sister is now in health board care. The health board service is excellent, she said, and "my sister has never been so happy."

"My sister is my priority and I have learned how to deal with her problems and fight her battles," she said.