People with Down syndrome speak for themselves
Sue Buckley
Abstract - A report of the Fifth International Down Syndrome Conference organised by the National Down Syndrome Society of the USA and the European Down Syndrome Association and held in Walt Disney World, Orlando, Florida in 1993, focusing on health care and research, education and employment and living in the community.
Keywords - Down Syndrome, Conference Report
Roberta and I have just returned from the Fifth International Down Syndrome Conference organised by the National Down Syndrome Society of the USA and the European Down’s Syndrome Association and held in Walt Disney World, Orlando, Florida. The conference was attended by 1,000 delegates from 47 different countries. Many delegates had brought their partners and children with them, so it was a very large gathering indeed. We had a most interesting time and would like to share the experience with our readers.
The main conference sessions were for parents and professionals. Each of the three days, the programme focused on a different topic, health care and research, education and employment and living in the community. The speakers were all experts in their field and included parents and professionals. I learned a great deal and will report on some of the sessions in the next issue of the Newsletter, when I have received audio-tapes of the main sessions from the USA, so can be sure of giving a full and accurate account.
However, this conference was different from those that I usually attend. While I learned a lot from listening to other parents and researchers as usual, at this meeting I learned a great deal from people with Down’s syndrome themselves. At the first session, six young adults with Down’s syndrome addressed the audience of 1,000 people in a huge auditorium and each described their childhood experiences, their lives now and their hopes for the future.
Their names were John Taylor, David McFarlane, Mitchell Levitz, Andy Trias, Mariana Paez and Paloma Garcia-Sicilia. They came from Canada, the USA, Spain and South America. It was a most moving experience to hear these young people speak for themselves, to share their experiences, hopes and fears, to hear them discuss how they felt about having Down’s syndrome, how it had affected their lives and the lives of their parents. Each speaker had prepared their talk and read it except Paloma who addressed the audience without reading her notes and in fluent English, her second language as she is Spanish.
I have to admit that I found this and several other sessions an emotional as well as educational experience. I think that every speaker acknowledged that the most significant influence in their lives had been their parents and families. They had families who had believed they could learn, who had loved them and fought to create the opportunities they needed to develop despite the lack of education and services when they were children. I will include some of their speeches in the next newsletter when I can take them verbatim from the tapes.
While these young people are some of the most able young people with Down’s syndrome and many children are more severely affected so would never be so capable, these high achievers would not have made the progress without the opportunities they have had or if their parents had believed what they were told to expect when they were born. I feel sure that the majority of young people could be more like those we consider the most able at present given family love and support, appropriate education and acceptance in the community.
I was filled with sadness when I thought of the majority of children and adults with Down’s syndrome who have been denied these opportunities because of the beliefs of the past and who live such diminished lives as a result. Many of the parents attending the conference had babies and young children and found that the opportunity to talk with these capable young adults gave them much hope, the confidence to help their own children, and to go back to their own countries and fight for services.
I wished that I had been able to go to a conference like this when Roberta was a baby and I felt very sad when I thought about her experience of growing up, the attitudes that we fought and the lack of education and expectations. I feel very bitter at times, when I think of the opportunities that our society has denied her and the very poor services she has endured, starting with 15 months poor care, sickness and neglect in a back ward of an awful hospital for the ‘severely subnormal’ as a tiny baby in 1969 before we fostered her, followed by extremely poor segregated schooling.
We fought and have created change but each time it was too late for Roberta to benefit. Sometimes I think that I did not fight quite hard enough because I was not quite sure that my beliefs and hopes for her were realistic. I think that I would have fought harder if I had met some high achievers twenty years ago and realised that I was not unrealistic. Her life is still being diminished by lack of appropriate opportunities for employment and social independence.
Roberta had a great time at the conference. Some fifty teenagers and young adults had their own programme of serious and social activities. They visited the MGM film studios, went swimming and had a disco evening plus a calypso evening with Mickey and Minnie adding to the fun. They also had a conference day of their own at which they discussed ‘The Employment World’ and ‘What Down’s Syndrome Means to Me’. All the speakers were young adults with Down’s syndrome including Chris Burke, star of ‘Life goes on’ the American soap that he worked on for four years. You can see Chris Burke and Mitchell Levitz preparing for the first session in the photo on page 4. Mitchell works in a music store in New York. Roberta enjoyed meeting everyone, especially the famous Chris and settled into life in a luxury hotel as though she had lived there all her life!
We learned that the ‘Life Goes On’ series has really changed perceptions of people with Down’s syndrome in the USA as Corky Thacher (the part Chris plays) became familiar to every household. Chris Burke, his parents and Michael Braverman, the creator and producer of the show were given awards at the conference for ‘the show which has done so much to increase public awareness about the potential and abilities of people with Down syndrome all over the world’.
Mitchell and his friend Jason Kingsley are writing a book about their lives in their own words to be published in January 1994 (see p). Emily Kingsley, Jason’s mother, addressed the conference on the theme ‘Vision for the future’. Jason is 19 years old and he is also well known in the USA. Emily writes scripts for Sesame Street and Jason appeared on the programme at four years of age. His life story was told in the film ‘Kids like these’.
Emily told us of Jason’s birth and the early years of battling against the ‘he’ll never do anything’ attitudes of all around her. Emily and her husband Charles were also presented with awards in recognition of the part they have played in changing attitudes by speaking with Jason all over the USA and by getting many children with disabilities on TV, particularly in Sesame Street. Jason was not at the conference as he was working at a summer job. Emily described the next challenges facing them in helping Jason become independent and find employment and urged everyone to keep up the political pressures in order to improve the lives of everyone with disabilities.
Chris’s life and that of his family is described in a book published in 1991 entitled ‘A Special Kind of Hero’. This book is a detailed account of the Burke family’s life from Chris’s parent’s childhood to the present day. Chris has two older sisters and an older brother who have played a big part in his life. The family has suffered a number of tragedies; one of his sister’s has a daughter with Retts syndrome which causes severe mental retardation and his other sister had one child stillborn, his brother almost died of a rare blood disease and Chris had to have part of his lung removed as a result of inhaling pine needles put in his mouth by a school friend as a prank.
The book describes a close knit supportive family with tremendous courage and determination, some of it drawn from Chris’s father’s experience of surviving in a German prison camp during World War 2, when he was shot down and captured at the age of 19. It is clear that Chris’s success owes much to his family’s care for him and the opportunities they created. Chris was educated in two Catholic special schools as there were no mainstream opportunities at the time. He boarded at school and his parents did not believe in over-protecting him.
It is also clear from all the accounts of teachers and others outside the family that Chris was keen on acting and showed creative talent from a very early age and that he had a sensitive, warm and caring personality. His first job was as an aide in a class for severely disabled children where he developed remarkable relationships with them. The book is well worth reading and I think that most parents would find it encouraging as well as giving some practical ideas on how to parent a special child.
Another speaker who had a big impact on me and I suspect everyone else at the conference was Lou Brown who spoke on inclusion in education and employment. He is Professor of Rehabilitation Psychology and Special Education at the University of Wisconsin, Madison and is directly involved in the provision of special education services. He is also a talented and entertaining speaker and frequently had the audience rocking with laughter as he described the way he and his colleagues in the education service had been challenged into changing their service by parents. He is now totally committed to fully inclusive education. I will report more fully on this in the September issue and on other sessions on education issues. However one phrase that Lou used I just have to share with you and hope you will remember it.
PROFESSIONALS DON’T GROW UNLESS PARENTS WATER THEM !How about that for a view of parent-professional relationships! Any professionals wish to comment?
The other words which stuck in my mind were some of Emily Kingsley’s. She said that the two keywords we needed to reflect on, which determine our children’s progress, are
EXPECTATIONS AND OPPORTUNITIESWe have to raise expectations and create opportunities.
It was a truly international meeting and we were frequently reminded that the opportunities are very different in different countries. Many countries still have no educational provision or services for their children at all. A teacher from Mexico spoke of her country and the school where they struggle with no equipment or trained staff. She even told us of children with Down’s syndrome she knew who were still being kept in cages and fed like animals. She asked us to understand rather than condemn their parent's behaviour in treating them like this in 1993 and to think how they might be helped to create change in Mexico. Their parents had no opportunity to learn about Down’s syndrome and find out how to help their children.
Many countries are struggling to establish services we now take for granted, such as early intervention, even though we have only had them for the last ten years. I have visited two countries this year, Turkey and Malta, where services are far behind ours to support the work of the parents and professionals in those countries who are working together to improve provision. It was good to meet up with the people from both countries in Orlando.
One decision taken at the conference may go some way towards helping the countries where families are so much less fortunate than we are. Plans to set up an International Downs Syndrome Organisation and international office were discussed. If this can be achieved then we can all work together across the world and learn from each other. We could share in disseminating information and funding research. It really is an international issue as we could see for ourselves in Orlando where we met children with Down’s syndrome and their families from every continent and almost every country.
If you are wishing that you could have attended this conference, then you may like to know that the next one will be in Europe, probably in Paris, in 1996. I hope that I will be able to be there and that I will have the privilege of meeting again many of the people that I met this time all of whom are warm, kind, caring and determined people - doing the best they can for their own children and families, supporting each other and often devoting their lives to improving the world for other people as well. I meet people like this wherever I go to talk about disability and it maintains my optimism about human nature despite what I see on the TV news daily.