PARENTS’ FUTURE PLANNING GROUP FORUM

by Máiríde Woods

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It was an emotional evening in Ballymun, Dublin, on 22 April 1999, when the Parents’ Future Planning Group (on the campaign since 1994) spoke to a full hall on the topic of legal action in support of rights.

The first speaker was Vincent Browne—en route to his radio show. This time, his topic was not Gogarty versus Goliath, but St Ita’s Portrane (the mental handicap wing thereof), a place he has been concerned about since presenting a programme there twenty years ago. He talked about the substandard treatment of people with learning disabilities in psychiatric hospitals, in the context of Annie Ryan’s new book. The two points that stuck in my mind—apart from management’s seeming powerlessness over broken windows, taps and doors—were that St Ita’s was not necessarily alone in its squalor (at one time Clonmel District Hospital rivalled it) and that a system of inspection of mental hospitals does exist. However, the reports of the Inspector of Mental Hospitals rarely reached the public domain and many seemed to be cursory and ineffective. Observations about the need for personal clothing, for example, occur in reports of both 1958 and 1998. In the context of the TV programmes States of fear, this should remind us that inspection on its own is not enough: inspectors need to be independent, concerned and heard, and the public needs to be concerned and listening.

Marie O’Donoghue spoke of the benchmark case which she took against the Department of Education on behalf of her son Paul. The fact that Paul is now fourteen and the fight began when he was six demonstrates the type of endurance needed for such a struggle. Marie was keen that other parents should be aware of their rights on foot of the judgement. She outlined some of the steps needed to claim them.

Jan O’Sullivan, TD (Labour), spoke of the disability legislation currently grinding its way through the Dáil, such as the Equal Status Bill and the Disabilities Bill. She put her hand on her heart and admitted that the Department of Education had been wrong in appealing the O’Donoghue case, and she regretted the constant official harping on cost-cutting. Terms like ‘nominal cost’, ‘minimum discretion’, ‘practicable’ and ‘available resources’ could become a charter for penny-pinchers. She pinpointed the fact that the act setting up the National Disability Authority did not provide for a complaints system, and she highlighted superior provision in British and American legislation.

Teresa Blake, the barrister who is taking the case of the people with learning disabilities in St Ita’s to the European Court of Human Rights, said that awareness, empowerment and the willingness to follow up complaints were what would make human rights standards work. The mobilisation of shame and legal action were the only languages government departments seemed to understand. She mentioned the Australian Human Rights Commission as a model for an appropriate complaints body. Funnily, one of the things she didn’t mention was international awards for half-hearted legislation ….

Fergus Finlay (of the National Parents and Siblings Alliance) made an unscheduled contribution. Despite all those Celtic tigers (isn’t that what they are?) baying around Temple Bar, and the rise in everything from the pile in carpets to GNP and tax receipts, the share (percentage) of the tiger’s picnic-box coming to people with learning disabilities has not risen since 1992. This is concealed by a rise in the net amount spent. He believed that 0-7% of Gross Domestic Product (GDP) would meet present needs, and he felt that this was a small contribution from one of the world’s twenty richest countries. Recent judicial reviews had held that straitened funding circumstances were no excuse for denying a person’s constitutional rights; however, linking residential/respite care to a specific constitutional right was still proving difficult.

Contributions from the floor were no less harrowing than before—you sometimes feel that nobody official really hears parents’ stories. There was a sharp exchange between the chairperson and a local politician who took exception to the robust tone of the invitation—the Parents’ Future Planning Group expects its politicians to be there—no excuses wanted! Perhaps all those assertiveness courses are beginning to work, or perhaps after a number of years there’s a constitutional right to anger!

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