Siblings will accompany their brothers and sisters on their journey through life longer than anybody else, but until the founding of Siblink (the national association of adult brothers and sisters of persons with intellectual disability) we did not have a voice. We have not always been consulted by parents, and certainly never by the state, in relation to our own needs regarding our role, both apart from as well as in the making of life decisions for our brother/sister who has a learning disability.
Siblink provides us with a forum to share our personal experiences of growing up with and continuing to care for a handicapped person, and suggests positive coping strategies. It also provides us with an opportunity to lobby for concrete political action and to contribute towards the development of a national policy which takes account of our needs.
Siblings acknowledge readily that there are positive aspects which enrich our relationship with our mentally handicapped brother or sister. These include: making us more compassionate, understanding and sensitive; learning from our sibling; learning to deal with challenges; learning to appreciate the uniqueness of every individual; loving our brother or sister in a fiercely protective way.
Because of the lack of acknowledgement of our right to our own life as a sister or brother, rather than as a parent-in-waiting, the negative aspects of being a sibling unfortunately outweigh the positive. At our meetings, siblings have spoken about the terrible guilt we can feel—for not spending enough time with our sibling; for resenting the time we do spend; for being embarrassed about their behaviour in public; for dreading the thought of having a handicapped child of our own. Siblings feel that the disabled sibling can dominate the family. It can be very difficult to challenge a parent to consider residential care and to make a life-plan for the sibling that does not include us having a central role. We find that the responsibility for the disabled sibling always seems to fall on a sibling, usually the sister, who lives closest to home. We feel pressure to over-achieve to make up for what our handicapped sibling will never do. We worry about the health of our parents, who are often under intolerable strain.
We want it to be clearly understood that our role is as another support and a resource, playing our part in a state-provided structure. We cannot be seen, as we are now, as the automatic replacement for our parents, because the state offers so few alternatives.
- We believe that the state has a responsibility to provide a complete care programme for our mentally handicapped brother or sister, with an appropriate life-plan based on an assessment of their needs from the time their disability is diagnosed. This life-plan must acknowledge that siblings are not the automatic carer-replacement for parents. Adequate funding must be put in place now, in this buoyant and prosperous economic climate. Work on the concept of a life-plan needs to start as a matter of urgency and needs to be implemented within a concrete time-scale.
- Parents, siblings and the disabled family member need state-funded professional support, advice and information from the time a person is diagnosed as having a disability.
- Good policy cannot be a hit-or-miss affair which changes with the staff in a service provider organisation or when a new government comes into power. Policy for mental handicap must be formulated in consultation with siblings and parents.
- All service providers, including health boards, should provide a standardised quality service, accountable to and monitored by an appropriate national body.
- Parents and siblings must be represented on the boards of all the service providers, by election.
If the steps we advocate are put in place, it will establish an essential multidimensional partnership between parents, siblings, persons with disabilities and the state which will provide an enlightened answer to that awful question which wrongfully continues to haunt parents and siblings alike: What will happen to her/him when I die?