SCIENTIFIC SYMPOSIUM IN ASSOCIATION, 2003 SPECIAL OLYMPICS WORLD SUMMER GAMES: ‘Supporting families’

by Kathy O’Grady

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Europa Hotel, Belfast, 19–20 June 2003
That a scientific symposium coincides with the staging of the Special Olympics in Ireland is no coincidence. Eunice Shriver noted that when the Special Olympics were first held in Connecticut over thirty years ago, it not only provided a forum for athletes to demonstrate their attainments, but also for the many carers, medics, coaches etc. to exchange views on important matters such as healthcare. A natural progression was to formalise these events in the forum of the Scientific Symposium.
Tim Shriver, CEO of the Special Olympics, highlighted the findings of an international study that revealed stereotypical views as the greatest barriers to better quality of life for the 170 million individuals with intellectual disability worldwide. The study referred to was conducted among 8000 people, in ten countries. One finding was that those respondents who had an involvement with Special Olympics believed in more inclusion and expected fewer negative impacts from the inclusion of individuals with intellectual disability in all aspects of society. It was the opinion of 79% of the respondents that children with intellectual disabilities should be educated in segregated settings, either at home or in special schools; the remainder believed that they should attend regular school, either in a special or inclusive class.
54% of people believed that the inclusion of people with intellectual disabilities in the workplace increases the risk of accidents, and 49% of the respondents believed that the best living arrangements for people with intellectual disability is in the home.
9% people believe that institutions are best, and 17% believe that group homes are best, and only 25% believe that people with intellectual disabilities should live in either supervised apartments or independent living.
‘Simply put, these results are unacceptable. But it strengthens our resolve to expand the Special Olympics experience to a new generation of athletes and volunteers throughout the world. Our greatest hope is that this study will serve as a catalyst for a real and lasting change in public attitudes towards the inclusion of individuals with intellectual disability in every aspect of society, in every country on the planet’ (Tim Shriver).

Dr Patricia Noonan Walsh chaired the opening plenary session of the symposium, which was given by family members. Patricia Hickey of Bruff, Co Limerick, mother of twin boys with autism, gave an eloquent account entitled ‘Too many eyes’, which referred to her son’s description of being in a room with several people.

Maria Overeen, a Dutch woman who has resided in Botswana and who founded the Down Syndrome Association there, spoke of the conditions facing many single-parent households there, where over half the population has been infected with the HIV virus, and there are many with intellectual disability.

Rosario Marron, from Washington DC, sketched the life of her 25-year-old son, and described how he has enriched their lives more than they ever thought possible.

With over 50 speakers and 3 parallel sessions, Ireland was well represented with talks from (among others) Clíona Ní Chualáin (NAMHI), Owen Barr (University of Ulster), Brian McGowan (University of Ulster School of Nursing), Shay Caffrey (St Michael’s House), Donal McDaid (Research and Evaluation, Belfast), Claire Mullen and Kath Valentine (Speech and Language therapists, Down-Lisburn Trust). Professor Ray McConkey of the University of Ulster gave a keynote speech entitled ‘Supported families–Backing winners’. In his usual gifted style, Roy’s address was both entertaining, informative and, most importantly, thought provoking. He described the continuum of perceptions among families with a member with disability—from burden to joy, problem to love, hopeless to achievement, and endless to good company. He quoted a family member who said, ‘My son has given us a lot of difficult times, but also we had a positive and rewarding life experience’. Roy talked about the truisms of families’ lives—their unconditional care, their predisposition to community inclusion, their person-centredness, and the notion of their life-long commitment. Professor McConkey stated that it is clear from research that children do best within their family units. However he emphasised the importance of parent/professional relationships and building on good partnerships and working towards joint goals. This desired working partnership between families and professionals requires:

  • A common place,
  • Open communication and mutual help,
  • A number of different skills.
  • Communication and negotiation from the onset.

Roy quoted the adage, ‘There are two gifts that you can give your children: One is roots, the other is wings’. When the roots are based on love, care, self-worth, and a good moral basis, then the wings can enhance expectations, confidence, opportunities, the ability to manage risks. These qualities anchor and support the motto of the Special Olympics: ‘Let me be brave in the attempt.’.

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