THE AMBASSADORS
THE AMBASSADORS
FEATURE
Volume 2,
Issue 1
January 1999
DOWN SYNDROME Revisited
Chris Burke & Friends:
Defeating Down Syndrome(Part
2)
by Dr. T.I. Farag FRCP(Edin)
In the Ambassadors' previous issue, we featured Chris Burke of
the TV series "Life Goes On" in our Health
Supplement. In the past month, we've received a great deal of
positive feedback about the article. In this Special Peace Issue,
we offer a follow-up article about Down Syndrome (DS) as a
benefit to those who are affected by DS and those whose lives are
most affected by the genetic ailment.
Chris Burke, a young man with Down Syndrome, has redefined new parameters for the progress and development of others with DS. Not only was Burke the star of the TV series Life Goes On, he was recently appointed to the prestigious position of Goodwill Ambassador for the National Down Syndrome Society (NDSS) were he also serves as the editor of its special newsletter. Burke's achievements are unprecedented for someone with Down Syndrome. Only decades ago, people with Down Syndrome lived in institutes for the mentally retarded. With the example of Chris Burke and the community based efforts of Down Syndrome societies worldwide, the aspirations of people with the genetic disease have soared. Today, much like Burke, people with Down Syndrome are now interactive members of mainstream society.
In the book "Down
Syndrome: Living and Learning in the Community," a 1995
Wiley-Liss publication by Dr. Lynn Nadel and Mrs. Donna
Rosenthal, had a literary contribution from Chris Burke wrote the
book's foreword. The book included texts from 57 contributors on
up to 42 vital topics relating to DS. For many parents and health
care professionals dealing with DS, Nadel and Rosenthal's work is
fundamental. Enabling people with DS and their families to cope
with the problems they face and participitate to the fullist in
community life is the aim and objective of the book. Its seven
sections examine personal observations by DS parents on the theme
of empowerment and independance, behaviour of DS patients, family
support, cognitive development & language acquisition,
education, clinical care, and community participation. The
textbook is a direct result of the Fifth International Down
Syndrome Conference co-sponsored by the National Down Syndrome
Society (NDSS) and the European Down Syndrome
Association (EDSA).
Down Syndrome: Living and Learning in the Community
Chris Burke has always had an interest in writing. Starting in his school years, Burke was a reporter for his high school's newsletter. Burke's development has earned him much recognition and set an example for many people with Down Syndrome. In his forward to this book, which includes scientific research from Canada, France, Spain, the United Kingdom and the United States, Burke mentions:
"I live an exciting and happy life. That's because I am living my dreams. I love entertaining people and being an actor, and I like to help my fellow handi-capables.
Many people recognize me from my role as Corky Thatcher on "Life Goes On" an ABC-TV series for many years. Corky has DS and so do I. Only that I call it Up Syndrome, because having DS has never made me feel down. I'm always up. One reason it is uplifting is because of the tremendous support I have received from my family and all the people in my life. My teachers, my friends, and the people I have worked with are very important to me, just like I am important to them.
Being part of a community is important for all people, whether they have DS or not. Everybody likes to be included. That's why I think it's great that people are now understanding what life is about. It's about ability, not disability. We have dreams, and we live them everyday."
The book also includes commentaries by young adults with DS who describe in their own words their feelings and accomplishments and offer indispensible advice for others with DS. For many families with DS relatives, the words of Chris Burke and other DS contributors in the book are extremely uplifting and motivating. While trying to raise DS children, parents are starting to learn from the example of the Burkes. Chris's mother, Marian Burke, shared her experience with her son in her contribution to the book with an article entitled, "Inspiring Self-Esteem: A Parent's Perspective."
"In 1965, when Chris was born, there was very little outside assistance available to our family. My husband, Frank, our two daughters, Ellen & Anne, our older son, J.R. and I therefore bonded together to set a certain tone for his behavior, appearance and manners if he were to join us in all aspects of family life.
We must accept our children as they are presented to us, then work hard on all facets of their education- at home, in the community, and at school so they can be independant. We do this for our other children, why not for our children who have Down Syndrome?"
Along with a plethora of personal experiences in dealing with people with DS, and the countless invaluable lessons for parents with DS children, Nadel and Rosenthal's book, written under the auspices of the NDSS, provides the long-awaited state-of-the-art information on DS and advice about the condition. The data in the book presents up-to-date information about the programs and services now available to people with DS as well as a comprehensive overview of the latest advances in medical practice.
In their preface to the book, Nadel and Rosenthal mentioned that "in the past 20 years, our knowledge about the health care, education, living arrangements, socialization and employment of people with DS has changed rapidly and substantially. Living at home within the community is now the norm. Growing up with one's peers in school and at play, working side by side, dating and living independently, and growing old now present opportunities and new vistas to conquer for people with DS."
Chris Burke & his Friends
Burke has become a spokesperson for approximately 2 million people with Down Syndrome worldwide. His success story is now symbolic for many people with Down Syndrome, and has challenged both families and professionals in their pursuit of a better lifestyle for those patients. It is well known that Down Syndrome (Trisomy 21) affects approximately 1 in every 600 live births in all ethnic groups with a prevalence of one in 3000 of the general population.
In the book, the mother of a DS child admires six remarkable young people who spoke at the opening of the 5th International DS Conference. She mentioned,
"What an incredible display of ability and poise. And these are youngsters from a whole generation ago, historically speaking, kids from Jason's generation [her son] and, even older, who probably had battles to fight that were even more intense than the ones he had. And look at what was produced. People with diabilities are America's largest minority group and, if we all spoke with one voice, we could make anything happen."
People from 47 different countries attended this conference with the purpose of bringing together professionals and families to meet one another, and to acquire the state-of-the-art knowledge about DS and the programs and services that are evolving to help people with this genetic disorder achieve their full potential in the community. The conference attendees did not all speak the same language. Nonetheless, they communicated well, and learned that they all have goals, ideas, jobs and a place in the larger community.
Some parents and grandparents of DS children also shared their experiences. A psychologist with a DS son wrote in an article she wrote in Nadel & Rosenthal's book that although she graduated in 1986 with a degree in psychology, no one had taught her better than her DS son, Andy. Another grandmother with a newly adopted DS grandson wrote in her article "The Magic of Family Empowerment" that when she talk about families she emphasizes that professionals are also family members.
Nowadays, with a lifespan of more than 50 years issues of medical care, sexuality and community living have to be considered in persons with DS. The book's editors, Nadel and Rosenthal, tackled the vital yet underestimated importance of marriage and sexuality in people with DS. Accounts include interviews with people who have DS and successful marriages in their 30's and 40's. In each instance, the other partner does not have DS, but instead another disability, e.g. cerebral palsy. It is well-known now that fertility is markedly reduced in males with DS, yet women with DS are much more likely to be fertile than men.
Dreams for Trisomy 21 in the 21st Century
Chris Burke and his friends with Down Syndrome in this book, Jason, Andy, Sean, David, Paloma, Pat, Jane, Gretchen, etc. are in fact models for parents with newborn DS babies. The NDSS, the Canadian DS Society (CDSS), European DS Association (EDSA) and similar organizations in various countries must co-operate to enhance the future for two million DS patients worldwide.
The Ambassadors will present activities of different DS societies and review many selected books on DS in future issues written by specialized personnel. This initiative is part of the ongoing major project of: "DOWN SYNDROME ENCYCLOPEDIA".
