Veronica Cleary, Chairperson, opened the Siblink Conference in UCD on 19 September 1998, attended by approximately sixty delegates. She highlighted the many achievements of the group: siblings, as individuals, had moved from position of no voice, no ear, and no consultation—to establishing a national committee of siblings with a constitution, newsletter, mailing list and mission statement.
The double agenda of Siblink is to develop positive strategies, and lobby for concrete action, in planning for dignified lives for their siblings with learning disabilities; and to provide a forum for siblings to meet and discuss their personal experiences.
Jim Mitchell, TD, gave a powerful keynote address, and left his prepared text to give a frank account of his family’s experiences. His sister Hazel is the oldest of ten children (eight of whom are still surviving); she is still the focus of their lives. She has had an intellectual disability from birth. When their father died suddenly, their mother had to go out to work. Due to the strain of maintaining the large household, as well as working long hours outside the home, her health deteriorated, and their family doctor arranged for Hazel to go into St. Brendan’s Hospital, Grangegorman. Jim Mitchell recounted the impact of that institutionalisation on their family—the stigma of having someone belonging to you in ‘the Gorman’; dealing with emotional outbursts on visits to the ‘cells’ or ‘visiting hall’; the wrenching quandary when it came time for her to return there after a holiday interval at home.
Hazel Mitchell now resides in the vastly improved setting of Cheeverstown and spends her weekends with her siblings, especially two younger sisters who live in Dublin. As a public representative with a unique understanding of developmental disability, Jim Mitchell challenged Siblink delegates ‘not to accept complacency in the face of the Celtic Tiger’. He reminded them that the population of people with mental handicap is increasing at the same time as family size is shrinking and the population of sibling carers is decreasing. He congratulated Siblink for helping to keep the focus on the needs of this group and ended by declaring ‘when I am Minister for Health, the needs of people with mental handicap and their families will be my number one priority!’
Kathy O’Grady, psychologist with the Sisters of Charity in Westmeath/Longford, spoke of many parallel experiences in her own family, in which there were also ten children. She was ten years old when Sheila was born with brain damage. Sheila had to be carried, by siblings, most places (her parents would not give in to a wheelchair for her). She eventually did learn to walk, to talk, and to do most things—slowly—for herself- Her attainments were wonderful for her personally and a learning experience for all around her; they demonstrated how much could be achieved and how important self-empowerment really is.
Kathy O’Grady also recounted research findings into siblings’ experiences, giving common emotional and practical experiences, positive aspects and stressors of growing up with a family member with a developmental disability, and such considerations as supported living, quality of life and aging.
During the afternoon, Siblink delegates heard from Aileen Morrissey, who is married with three teenage children, and Paul Wright, the youngest of four siblings, who described life with their brother Bernard who has Down Syndrome, is hearing impaired and unable to speak. Aileen pointed to gender-specific roles which need to be more equitably distributed—‘daughters are always seen as little helpers to mother’. They both pointed to the ludicrous situations in state financial assistance—in their instance, the carer’s allowance was lost when the widow’s pension became available. In a nutshell, both Aileen and Paul called for greater financial supports to families, and for planning positive futures for all.
Siblink’s mission statement gives the main principles which form the basis of their activities. They state that the state has a responsibility to provide a complete care programme for the mentally handicapped person, with a lifeplan based on an assessment of that person’s needs from the time their disability is diagnosed. Adequate funding must be put in place for the care of the mentally handicapped. Both parents and siblings need state-funded professional support, advice and information from the time a person is diagnosed as mentally handicapped. Siblings should be included with parents in consultations on policy in relation to the mentally handicapped, with the recognition that siblings are not the automatic carer replacements for parents. They declare that service providers must be accountable, their activities monitored by an appropriate national body, with parents and siblings represented on the boards of all service providers.