The twelfth World Congress of the International League of Societies for Persons with Mental Handicap was held in The Hague on 24-28 August 1998. The congress agenda for human rights and social justice for persons with learning disabilities was put forward strongly in many languages and in different ways by parents and family members, carers and professionals. It was also voiced loud and clear by over 250 self-advocates who participated in all stages of the congress. UN High Commissioner for Human Rights, Mary Robinson, sent a message to the world congress in which she said: ‘This year of commemoration of the Universal Declaration of Human Rights provides the opportunity to examine what has been achieved and to reflect on what needs to be accomplished in the future. The provisions of the declaration call for the respect of the rights of all human beings with or without disabilities. No society can enjoy development without all its members doing so.’
Congress delegates from over 70 countries spoke about human rights—the fight for rights needed to continue at all levels, all the time. They discussed the violations and abuse suffered in institutions and how people had been freed from such institutions—changing the attitudes of communities, governments and policy-makers of local authorities and of other members of their communities who did not want people with learning disabilities living among them. In an important moment, 89-year-old Professor Gunnar Dybwad, founder member of Inclusion International, called for professional institutions to apologise for the ‘holocaust’ against disabled people through medical neglect and life-threatening practices in institutions throughout the world.
Delegates from developed and underdeveloped countries spoke vigorously and with determination about establishing equality and non-discrimination, despite the great discrepancies in progress reached so far. (In India and Africa, a father still has the right to leave his wife if she bears a handicapped child; in Sweden and some other European countries, a person with disabilities is entitled to an income, a personal assistant and individual housing.)
During the congress, several documents were launched in support of Inclusion International’s rights agenda. Call me mister emphasised the need to afford respect and dignity to persons with intellectual disabilities. There was an easy-to-read version of the UN standard rules on the equalization of opportunities for persons with disabilities. Klaus Lachwitz’s booklet on 50 years of human rights followed developments in international human rights instruments since 1948.
Discussions at the congress emphasised the topics of genetics, guardianship, employment, housing education and self-determination. The congress looked at how families, service providers, self-advocates and support organisations can bring about change, turning rights into realities. Good communication—awareness-raising, discussion and debate—were needed to convey the human rights approach on accessibility, education, housing, employment, income maintenance and quality of life.
Thirty support workers (personal assistants) met during the congress to discuss the challenges involved in their role. Both they and self-advocate delegates reiterated that conference speakers need to ‘make it simpler’, to enable all participants to understand their message.
Inclusion International honoured nine ‘agents of change’ with an Award of Recognition. Ireland’s Dr Noreen Buckley was commended for her work with people with learning disabilities, both as parent and doctor. Other award recipients were from Belgium, Brazil, India, Japan, Sweden, UNESCO, USA and Zimbabwe.
Self-advocates made up a record one-quarter of congress delegates. For the first time, they also held their own preliminary conference on 21-23 August. Presentations and workshops were run by self-advocates, some of whom also presented key points at the full congress. Translation assistance and support workers were available as needed. Presentations were made on the experiences of people with learning disabilities in specific countries, followed by discussion on common issues and positive initiatives. They identified barriers to their participation in society and the lack of control over their own lives, and they described their own vision for the future.
Rita Lawlor from Dublin made a presentation to the self-advocates’ pre-conference in which she encouraged delegates to speak for themselves and to make their own decisions. After a childhood spent largely in an institution, and teen years in a group home, she now has her own home and greatly values her independence. She used to work in a sheltered workshop but is now employed part-time in a hotel and spends much of her free time with Special Olympics, as a promoter and gymnastics trainer. Rita spoke with enthusiasm and understandable pride in her achievements.