The Sibling Support Project

Supporting siblings of people with disability

'Jason is special to me because he has a disability and is different from other people. Since he’s been born he has not been able to see, hear, walk or talk. I know he is a gifted person because he got communion when he was 18 years old, and he received it on my sister’s birthday. I watch Jason when my mom is doing things around the house. I hold him on my lap and hug him because he is so little. Sometimes I give him his drink after supper. I taught Jason to drink by himself. I don’t like it when he pulls my hair but he doesn’t seem to understand.’ This is a quotation from a personal account by Lizzie Suwala on the Sibling Support Project website and she was 9 years old when she wrote it.

Imagine you are a three-year old girl or boy when your disabled sibling is born. Maybe you are a young adolescent with a settled life that is turned upside down by the arrival of your brother or sister. Along with everything else, your childhood has to move over and make space for this situation. While it might be logical to regard the impact on their lives as a negative thing, parents and those who work to support siblings say that, with appropriate understanding and care, there is no necessity for that to be the case. Nevertheless, it takes special consideration to achieve this and however well the circumstances are managed there is an inevitable and significant difference in the lives of siblings of disabled people.

Their siblings are the people with whom a disabled person will often have the longest and closest relationship and so they are key people in each other’s lives. Children describe a variety of reactions to the disability of their brother or sister – not dissimilar from those of their parents although they may not be as well able to articulate them. They have to cope with less attention from their parents and can feel resentment and envy if this is not acknowledged. A particular problem for them – and one that is mentioned by most when asked – is the unhappiness that the reactions of other people to their disabled brother/sister cause them. Embarrassment can be felt if people stare or if the disability causes unusual physical symptoms or behaviour. Alternatively they may feel angry and protective if their brother or sister’s behaviour is misunderstood. Added to these things is the normal rivalry that occurs between siblings and the associated guilt and regret if they are unable to maintain the level of understanding and patience that may be needed. Often, siblings feel under pressure to achieve more in order to compensate for the disability. ‘I feel I have to be perfect’, as one child expressed it.

Over 20 years ago and in recognition of the impact on families of disability, a Special Education Teacher called Donald Meyer started a project in Seattle, Washington, to support under-served family members of people with disability. He says ‘originally, my work focused on the needs of fathers and grandparents. But from 1990 onwards, I’ve worked exclusively in the area of sibling support’. During this time he has established the world-renowned Sibling Support Project. Among other things, Meyer established a support initiative known as the ‘sibshop’ and sibshops are now run around the globe. Rachel Moriarty, who is the social worker with responsibility for facilitating sibshops at the Cope Foundation (which are run in conjunction with The Brothers of Charity and Enable Ireland) in Cork City says ‘we have been running them for two years now and they have proved very worthwhile. So far we have been working with younger children and we’re in the process of establishing something for adolescents as well.’ Rachel says ‘the most important thing for sibs is that their parents acknowledge the difficulties they face and sometimes that may amount to nothing more than just saying “I know its difficult for you but I am doing my best.” Often that is enough for siblings.’ Parents need also to ensure that siblings are not prevented from enjoying the right to their own lives and to accept that it’s not unreasonable for them to present typical behaviour – in other words there should be no expectation on them to be better behaved or to behave exceptionally in other ways. Siblings particularly need to be given strategies for coping – especially where there are behavioural issues to contend with.

‘In order for the sibshops to work well’ Rachel continues ‘it’s necessary for the group facilitators to understand the particular circumstances of each of the participants. This requires close knowledge of the disabled individual that each sibling is living with. Children express feelings of grief and loss – especially loss of expectation when their lives take a sudden and different path. The group helps to reduce the sense of isolation that may be felt’. Professional workers, including psychologists and social workers, facilitate the sibshops. A lot of preparation goes into them and they run in four sessions over four months. In the first two sessions the children are helped to get to know each other and to establish a bond within the group. There are high and low energy activities as appropriate. A popular feature of the sibshops are the ‘Aunt Blabby’ or ‘Dear Aunt’ letters which allow children both to express a particular problem in writing to an imaginary aunt and then to come up with solutions together. The third session is important in that specific information is given about the disability of each child’s sibling in the context of little groups who are by then at ease with each other. For example, they discuss sensitive issues such as the support services that their brother or sister may need and why, and also their schooling arrangements. The fourth session is structured to create a feeling of calm about the subject as the group winds down and art is used as a constructive and enjoyable means of expressing the various outcomes for the participants of the sibshop.

‘But it is really important to understand’ says Rachel Moriarty ‘that it’s by no means a negative situation. Siblings feel great love for their disabled brothers and sisters and are very protective towards them. They are usually very proud of them and their experiences bring out a kind of understanding and sympathy for others that are unusual in children. Many people who go into the caring professions have a disabled sibling. Sometimes, when we offer a place on a sibshop to a child they wonder why – they are completely adjusted to the situation and can almost feel offended for their brother or sister by the suggestion that they might find it difficult. That’s not to imply that children who feel differently are not coping as well because children usually have very good reasons for feeling the way they do. Almost all of the children we see feel great respect for their disabled sibling and they want them most of all to be respected as individuals.’

For more information visit The Sibling Support Project website