INTERNATIONAL SEMINAR: Ethics, Rights, Inclusion–Is there a dilemma?

by Áine McGuirk, Programme Manager, St Augustine's School, Blackrock, Co. Dublin

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On 23 September 2000, the COPE Foundation and the Sisters of Charity of Jesus and Mary presented an international seminar at University College Cork, coinciding with Inclusion International’s General Assembly and the meeting of Inclusion Europe and the Committee on European Affairs. An impressive array of speakers–international figures, parents and Irish professionals–discussed the problems of inclusion for those with an intellectual disability from an international perspective.

Inclusion International, the advocacy organisation of 200 national and international associations in 120 countries, is devoted to defending and supporting the human rights of the 60 million people with intellectual disabilities around the world. Inclusion Europe is a non-profit organisation defending the rights and interests of people with intellectual disability, their families and their organisations in the European Union and other European countries. In its concern for human rights in central and eastern European countries, Inclusion Europe cooperates closely with Inclusion International’s Committee on European Affairs.

The three sessions of the seminar dealt with ethics, rights and inclusion. International speakers spoke on the changing economic climate and the move towards market forces which govern the provision of welfare and the consequent customer focus of care provision. Professor Hans Reinders expressed concern that the relationship toward the client thus becomes driven by other issues. He expressed the view that caring for and caring about are different things, and that satisfying the customer’s wishes without questioning leads to professional laziness. Barry Coughlan spoke about ethical issues in prescribing practices in many areas of intellectual disability. He had concerns about over-prescribing, prolonged treatment with no review and the rights of the individual to be consulted about treatment decisions. He concluded that there is a need for the provision of information to the client and for professionals to engage in a proper therapeutic alliance with the patient/client.

Klaus Lachwitz sought support to combat the discrimination, neglect and exclusion that exist around the world, giving examples from Mexico, Romania and Bulgaria. He hopes that Amnesty International will take up some individual cases and he asked people to support them.

Also from an international perspective, Peter Mittler spoke about the right to inclusive education. He said that all children have the right to be taught by teachers who are competent to teach them. The aim should be to celebrate diversity within schools. Although global trends are encouraging, some countries are further along in the process of inclusion; many have not yet begun. Interestingly, the poorest countries tend to be those making the most progress.

Conference delegates showed concern at the lack of self-advocates among the panel of speakers. One visiting English self-advocate complimented the speakers, but said that he might have understood more if people had spoken more slowly, with fewer big words.

Each session included a paper by a parent, representing service users’ views on the level to which inclusion has progressed here. It is clear that we have a long way still to go.

Robert Martin, a self-advocate from New Zealand, spoke at the end of the conference about how other people’s actions and attitudes make intellectual disability worse. ‘Don’t give me my breakfast, and then when I knock it to the floor call it a behaviour problem. Ask me what I want. Show me pictures of cornflakes, porridge or bacon and egg, if you need to, but please ask me,’ (approximate quote). Robert’s final request to the gathering was, ‘Help us to understand the rights you are talking about’–an apt final comment before the close of the conference.

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