PUTTING THE ‘CAMP’ INTO CAMPAIGN: AN ACCOUNT OF THE DISABILITY CAMP-OUT

Last August, supporters of Sean O'Neill spent 24 hours outside the Eastern Regional Health Authority's Shared Services Centre in Dublin. Sean's mother Cathleen O'Neill explains …

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We camped out at Dr Steevens Hospital (ERHA) to draw attention to the plight of eighteen-year-old Sean O’Neill who was seeking an appropriate residential service. The history of the camp-out began fifteen years ago.

Most parents and families of individuals with a learning disability remember that mid-’80s election slogan: ‘Health cuts hurt the old, the sick and the handicapped.’ And they’ll be equally familiar with the fact that health cuts got much, much worse after that election. Nappy allowances were cut, respite services all but disappeared, residential places were few and far between and we began to exile children to residential services in the North of Ireland.

Sean O’Neill is autistic, with a moderate mental handicap and brain damage from a birth injury. After a wait of 3 1/2 years for an assessment of his abilities, Sean attended day-care in St Michael’s House. But when he was 6, he developed ‘wanderlust’ and often went missing. After untold worry and concern, we had to make the painful decision (with the advice of the agencies concerned) that, for his own safety, Sean needed residential care. Nothing could be found for him in the Republic. He eventually went to a Camphill Community in Bangor, Co Down, funded by our Eastern Health Board. He spent twelve happy years there (with about 13 weeks at home each year). The cost to his family was very great indeed. His twin sister and older brother and sisters frequently travelled up to visit him. I spent every second or third weekend in Belfast with him, at my own expense. I reckon I spent more than three and a half years of my life on the M1.

All that time we awaited an appropriate service nearer home. The Camphill community provided a curative education service and Sean was very happy there, but it was never an option for his adult life. When he was 15 years old I began to campaign in earnest to have a service provided for him in the South. I was promised a place by a voluntary organisation who offered to take him ‘as soon as they built a new facility’. Two and a half years and three start dates later that group withdrew the offer–although I understand at that stage they had already invoiced the health board for a place. Back to the drawing board. After my further quest for a place, Sean was offered a ‘bed’ in St Ita’s, Portrane. A bed–Sean is 6’2″, athletic and a wanderer. For years he had been in a communal living environment which encouraged outdoor chores–wheelbarrows, milk churns and plants to care for–he would feel totally caged-in in an institutional setting, possibly even in a locked ward.

At the same time that the ‘bed’ offer was made, the health board said they would have to withdraw his day service, which was a short-term measure during holiday time. I have a full-time job, so it had become a vital lifeline for us after Sean had left Camphill in June.

The camp-out was a direct action-campaign designed to draw attention to Sean’s plight and to the 3500 other people in need of a service. A hurried meeting was called; more than seventy people turned up to support Sean and a number of sub groups were formed–a media group, an email group, a campers group and a comfort-and-nurturing group who did food runs. The actual camp-out provided the focal point, but it was also a campaign based on E-politics–thousand of emails were sent each day to the offices of the ERHA and to the Minister for Health and Children. Within one day of the protest, Sean received an offer of a service and the camp-out organisers had round-table discussions with key officials in the ERHA about the crisis in residential and respite places. We received huge media coverage–RTÉ, TV3 and local radio, newspaper articles including Fintan O’Toole’s opinion piece in the Irish Times; a subsequent report by the RTÉ Prime Time team and an article in Woman’s Way. And Minister for Education and Science Michael Woods has announced the establishment of a task force on autism. Not a bad day’s work, by anyone’s reckoning.

At present Sean is being assessed in his new residential service. It is a slow and patient process and we are hopeful that it will be successful. The signs are all good just now.

Our campaign has showed that ‘protest’ works, especially in these cosy days of social partnerships. The protest was driven by anger at the so-called Celtic Tiger economy that has no room for its most vulnerable cubs. Some hard, pertinent questions need to be answered by voluntary service providers who seem to be accountable to no one about their methods of working. We hear far too much self-congratulation about how well Ireland is doing. The time is long overdue for a national debate on the moral economy and our responsibilities in times of plenty.

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