GET YOUR ACT TOGETHER

by Michael McKeon

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In Jury’s Hotel on 3 December 2001, a successful conference took place where a strong message was given to Irish society that people with disabilities are no longer going to accept the neglect, discrimination, injustice and charity dished out to them. Entitled Get your act together, the conference attracted a large attendance of individuals and groups to discuss and learn what is needed to inform the content and context of disability rights legislation in Ireland.

The speakers were powerful and in the workshops participants voiced the many strong ideas on disability and legislation that echoed throughout the large conference room. Professor Gerard Quinn, NUI Galway, argued that disability is a human rights issue and a civil rights department is required to provide for the emancipation of people with disabilities. Dr Pauline Conroy, social researcher, maintained that any disability policy must be made a public policy, not left within families as is still the case in intellectual disability: ‘if they [disabled people] have no family—it’s off to the welfare institutions’. She talked about problems even after disability legislation—difficulties of the enforcement of rights and the supply of services. She posed the question ‘are disabled people to remain with the status quo of collective services or can they move to a model of service brokerage, where each person has the power to buy their own service. Service brokerage is not a new idea in the field of intellectual disability—but it is still untried within Ireland.

To illustrate the need to move from policy-based to rights-based service provision, Kathryn Sinnott described the present life experience of 34-year-old Corkman Paul O’Sullivan, who has autism: ‘I have not seen even an animal in such a state of neglect. Paul lives three miles from the Minister for Health …. Paul is a monument to [present Irish] policy.’ She argued that we should not rush into legislation which may not be needs-based, that rights are never freely given but have to be fought for through positive pressure, including perhaps strong advocates being elected to Dáil Éireann.

Mary Wallace, TD, Minister of State for Equality and Law Reform, said that the Disabiltiy Bill would be published before Christmas 2001. She was at the conference to listen to the ideas of the participants. However, one could not help feeling that her extended speech perhaps had more relevance to a nearing election than to the real issues of disability being discussed on the day.

Séamus Ó Cinnéide of NUI Maynooth suggested that any bill of rights should include the right to achieve full potential and the right to self-determination should be included. Disability Federation of Ireland CEO John Dolan voiced a grave fear that the disability bill might prove to be a short-sell for people with disabilities.

Three dynamic workshops were held during the afternoon: ‘Making it’ (implementation and enactment of disability legislation), ‘Content’ and ‘Advocacy’. The workshops were recorded to be included in the eventual publication of the day’s proceedings. Journalist Fintan O’Toole chaired the workshop feedback session. He welcomed the many strong voices within the disability movement and he urged them to use their power. He proposed that the disability legislation debate should focus on four key issues:

  • Do we want the legislation to represent a fixed list of rights, or should it evolve in dynamic and flexible ways?
  • How would the legislative mechanism work and translate rights into action?
  • Should disability legislation be specific or part of mainstream rights law?
  • How can the disability movement use and develop its power to ensure results in the political/legislative arena?

Closing the conference, Donal Toolan of the Forum of People with Disabilities, said there were positive signs that the disability community was now ‘going somewhere’. People with disabilities and their families were unwilling to be left in a game of ping-pong between government departments and political manifestos. More people are raising their voices and demanding their rights in an equal and fair Irish society.

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