INTERNATIONAL EDUCATORS WITHOUT BORDERS (IEWB)


"A lot of academic don't care about solutions, they first want to write about problems."

- Prof. Anna Hunter


The Marathon of Hope (Part V)

Lessons From Celebrities With Down Syndrome*

 

By Prof. Talaat I. Farag


Dr. John Langdon Down (1828-1896)

 


First pictorial illustration
of a “mongol”
(Fraser & Mitchell, 1876)

No one is immune from having a health crisis at some point in her/his life journey. Babies may be born with major congenital anomalies, children in the pre-school age may suffer from autism, accidents may occur at any age, and with increasing life expectancies, many diseases like cancer and Alzheimer's are much more common today. In this section we present several inspirational stories of heroism over debilitating physical ailments. The following real-life stories illustrate the remarkable achievements of different people suffering from varying health problems and serve as examples of how crises can be overcome. The extraordinary achievements of the Canadian runner Terry Fox and American cyclist Lance Armstrong were featured in the January 2007 issue. They have become some of the most prominent symbols of battle against disease in the modern age. In this fifth part, we present examples of celebrities with Down Syndrome.


Families with children who have Down's Syndrome need constant reassurance that their efforts to improve the lives of their children are never in vain. This article focuses on the stories of men and women of different nationalities who were well taken care of by their parents and communities and have accomplished surprising measures of success in different fields. The study begins in 1866 and discusses stories till our current day in 2008.

In 1866, the pioneer English physician, John Langdon Down, the medical superintendent of the Earlswood Hospital in Surrey, published his three-and-half pages of his observations, describing a newly recognized clinical syndrome in children of different races, cultures and genders. He called these kids, “mongols”. His three observations of these children were:

After presenting their findings in an Edinburgh Royal College of Physicians meeting in 1875, Fraser and Mitchell published the first scientific report with the pictorial illustration of an unnamed “mongol” a year later in the Journal of Mental Science. They mentioned that the condition “is not really uncommon.” Dr. Mitchell recognized 62 “mongoloids” who had some aspects in common with cretinoids.

From Mongolism to Down Syndrome

Two years after reporting the presence of an extra chromosome in “Mongols”, both in Paris by Leujene and in Edinburgh by Patricia Jacobs in 1959, the editor of The Lancet (1961) mentioned that the description of this condition, previously described as Mongolian idiocy, is not acceptable. Twenty world leading geneticists had written to support the new nomenclature of “Down Syndrome”, which was confirmed by the WHO in 1965. On May 10, 1966, the world celebrated the 100th anniversary of Dr. Landon Down’s description by a symposium on “mongolism” and the term Down Syndrome or Down’s Anomaly has been more widely accepted, giving the condition a scientific dignity which it has deserved for a long time. The scientists showed dissatisfaction with the terms “mongolism”, “Mongols”, “mongoloids”, “unfinished child”, “congenital acromicra”, etc.

From Nigel Hunt to Omar Al-Awadi

After more than 140 years since Dr. Down’s observations, this study presents the stories of seven extraordinary and gifted persons with Down Syndrome, their devoted parents, and humanitarian communities. All of them were socially adjusted and became celebrities and role models. They proved that the so-called “mongols” are not only trainable but also educable. Even, some of them have made excellent and exceptional achievements, competing with those without trisomy-21 or translocations. Interesting some mentioned that “mongolism” is a disease of civilization! I have personally learnt many valuable lessons from studying the successful life stories of every one of those celebrities with Down Syndrome:

Celebrity Number One

Nigel Hunt – The Autobiographic "mongol"

In 1966, a remarkable autobiographical essay, The World of Nigel Hunt: The Diary of a Mongoloid Youth, was written by the exceptional “mongol” Nigel Hunt, who was born in England in 1947 and had a reported IQ of 45. He wrote and typed the manuscript of his book, with minimal assistance from his father. He wrote about his travels, his experiences, and how his parents had been told when he was born that he would be uneducable.. In the preface of the book, Prof. Penrose mentioned, “…his powers of observation are acute, and his memory of separate movements is extremely good. His manner of thinking, however, is extremely concrete. He is interested in fact, not fantasy. He never makes generalizations.” It is unlikely that Nigel Hunt’s writing abiliies would have been predicted from a person with an IQ of 45. In the introduction of the book, Nigel said, “welcome to my first attempt in writing this book. I had a royal honour in coming to London, to see Mrs. Eileen Garrett, the lady who advised me to write. I was educated in many places: at Longfield Primary School, Inellan School, Pinners, and at my father’s school, Atholl. I have my own typewriter and taught myself to write. When I went to London many years ago, I made a film with Prof. Penrose, looking at my palms. I also smiled at the camera, and he says it will go to America and I hope you have seen it.” In the past, before Nigel Hunt’s autobiography, the public image of “mongols” was one of helplessness.

In 1969, Sarason and Doris, captured the true importance of Nigel Hunt’s accomplishments. In their book, “Psychological Problems of Mental Retardation,” they mentioned, “We think that there is much of comfort and inspiration in Nigel’s diary for all of us. In reading Nigel’s description of the marching bands and of the mountains and of the towns he visited with his parents, one feels that in Nigel’s life there has been fun and joy. It is this achievement, a capacity for joy and courage, which makes this Mongol’s life a comfort and inspiration. It is this that makes Nigel unique, not among Mongols but among humanity.”

Celebrity Number Two

Christopher Burke “Factor”

Celebrities with Down Syndrome, like Chris Burke, offer excellent role models, embodying success and good self-esteem. He wrote the foreword of the book entitled, “Down Syndrome: Living and Learning in the community,” edited by Lynn Nedal and Donna Rosenthal in 1995, Chris writes, “I live an exciting and happy life, that is because I am living my dreams. I love entertaining people and being an actor, 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 Down Syndrome and so do I. Only call it, ‘Up Syndrome’, because having Down Syndrome has never made me fall down. I am always up. One reason is uplifting because of the tremendous support I have received from my family and all the people in my life. My teachers, friends, and 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 is why I think it is great that people now understand what life is about. It is about ABILITY not disability. We all have goals and ideas. We have jobs. We have a place in the larger community, but most of all we have dreams, and we live them everyday.” Corky, the character on the long-running TV-series, was able to communicate well and achieve many things.

 Chris Burke’s mother, Mrs. Marian, mentioned, “In 1965, when my son was born, there was very little outside assistance available for our family. It was difficult to make the non-challenged world aware of a person like my son, who needs to be recognized and understood the same as anyone else and for him to be comfortable in the presence of all the facets of society. Integration and inclusion had to be, and were accomplished in the social aspect of his life and in the community-based programs we sought out. We have to make life as normal as possible for our children. What gives us pleasure is to know that what we started as a simple family project, has been enhanced by the role that Chris Burke has played in Life Goes On. To see ordinary people in an airport pay homage to Chris is exhilarating, not because of the celebrity aspect, but because it shows he has proven his worth and worth of all his peers, and he has opened minds, hearts, and doors to acceptability for our children with Down Syndrome. I truly believe we must accept our children as they are presented to us, then work hard in all facets of their education – at home, in the community, and at school – so that they can be independent.” After graduating in 1981, Chris Burke, the boy scout, musician and actor became the Goodwill Ambassador of the American Down Syndrome Society (NDSS).

 

Celebrity Number Three

Sheenagh Hardie the Gold Medal Winner

Sheenagh is a Scottish independent Gold Medalist with Trisomy-21, who was born prematurely in October 1961 to heroic parents who succeeded with her doctors, teachers, and psychologists to help her catch up with her normal peers and win the "Baker of the Year 1982 Gold Medal" and the "Kyle Apter Award for Achievement" in 1989.

She published her autobiography entitled Why Me?: An Autobiography of a Down Syndrome Girl in 1991, telling her journey from early neonatal period, until becoming a celebrity in her hometown of Scotland. As a strong believer, she mentioned in her autobiography," Mum and Dad really felt that they had been specially chosen to be my parents. They told the specialist so, and he said it was a nice thought. Although you may think it odd, I know myself that God helped me to choose them to be my parents."

The autobiography showed clearly how Sheenagh was able to catch up with the appropriate care, training and support of the Scottish Down Syndrome Association (SDSA). Her hobbies include collecting autographs, stamps and postcards from all over the world and birthday cards she received yearly from HRM Queen Elizabeth II and Royal princesses. She is now a good photographer and always carries her camera in the picturesque scenery of beautiful Scotland and her journey's to Austria, Switzerland and Yugoslavia. She also likes working in woodenwork group, where she made doll houses, furniture, angelpoise lamps, drums, and a hobby horse!

Interestingly in 1981, the year of the disabled, Sheenagh entered in the Baker of the Year Competition and came in first, competing against NORMAL youth members from around the country!

 

Celebrity Number Four

Karen Gaffney Crosses the English Channel

Born in 1977 with trisomy-21, Karen Gaffney successfully swam the English Channel when she was 23, as part of a six-person relay team, making her the first person with Down Syndrome to do so. In addition to her trisomy-21, she also has a short crippled atrophied left leg and hip dislocation.

In 2007, the Portland-native became the first person with Down syndrome to swim the nine-mile distance across Lake Tahoe, the nation's second-deepest lake, completing it in 6 hours and 15 minutes. She has benefited a lot from her father, the swimming instructor who taught her how to swim at any early age, and continues to train her. The Tahoe swim was her father’s idea. He'd vacationed there as a child and knew that for swimmers, it was an Everest of sorts!

Karen completed a regular high school diploma in 1997, and attained an Associate Science degree and a Teacher’s Aid certificate at Portland Community College in 2001. She is the founder and director of the self-titled not-for-profit organization, the Karen Gaffney Foundation (www.karengaffneyfoundation.com), which is dedicated to the full inclusion of children with Down Syndrome in families, schools, communities and work places. Other members of the foundation’s board include Dr. Jean Edwards, professor of special education, and the psychologist, Dr. Loyal Marsh.

Today, Karen travels the U.S., speaking to a wide range of audiences about overcoming limitations and about what can be accomplished with positive expectations. Karen tackles any challenge she faces with determination and commitment, knowing she has limits, but not allowing them to limit her drive to succeed and to achieve her unlimited dreams.

Celebrities Number Five and Six

Dreams of Jason Kingsley and Mitchell Levitz

Count Us In: Growing Up with Down Syndrome is a very challenging book, published in 1994 by Hardcourt Inc. and written by two youth American friends with trisomy-21: Mitchell Levitz (born in 1971) and Jason Kingsley (born in 1974). When born, their parents were told to expect nothing, but they were lucky because they did not listen to the obstetricians’ advice. The parents gave their sons the chance to show how far they could grow. Dr. Mary Coleman, from Georgetown University mentioned that these two young men steel hearts and wash away generations of misconceptions. This book is a part of the self-advocacy-movement which offers the world to get a “window” into the soul of two young Americans with trisomy-21 and their four parents.

Jason’s mother, Mrs. Emily Kingsley, the writer for Sesame Street, and Mitchell’s mother is Mrs. Barbara Levitz, a special education teacher and founder of Parent Assistance Committee for Down Syndrome.

Jason and Mitchell have nothing in common, except that both want to support people with special needs. Interestingly, they have different dreams – Jason is looking to become a professional actor, like Chris Burke, while Mitchell, who studied political science and joined the Institute for Human Development, mentioned in the book that he is dreaming of becoming the president of the United States!!

Celebrity Number Seven

Omar Al-Awadi the Goodwill Ambassador

Omar Al-Awadi is a 32-years-old Kuwaiti gentleman with trisomy-21, who inspired his nation and moved his parents, community, scholars, and me.  He was lucky that both his parents were distinguished medical doctors. Being strong believers helped them with the psychological coping and to build a strategy to care for their son and other children with Down Syndrome. By the age of 22, Omar had completed his special school diploma in June of 1997. He had also started his full-time employment working for the Ministry of Social Welfare in a special sheltered workshop producing silk printing material.

Omar's presence in his mother's life inspired her to dedicate her career towards his betterment and the welfare of those with Down Syndrome and other special needs. When Omar was 12 years of age, his mother, Dr. Sadika Al-Awadi, defended her MD thesis in the eve of 1988 with a dedication to her beloved child. "To my sincere son Omar with 47,XY,+21 karyotype, who stimulated me to pursue my career as a clinical geneticist interested in the prevention of genetic problems in my country and other countries." In fact, she mentioned, "Omar was perhaps the most motivating factor behind my interest in establishing the Kuwait Medical Genetics Centre in 1979." The Center's earliest activities included parents gathering to talk about Down Syndrome and its causes, where to seek assistance, their children's integration into the education system, and their possibilities for the future. "This was not only a first-time activity in Kuwait but was extremely motivating for the parents including myself," she explains. Omar's presence in his parents' life also served as a motivation for the creation of Kuwait Down Syndrome Society and the Down Syndrome Parents League, that to this day provide families with indispensable services.

I was happy to meet Omar again during the First Kuwait International Genetics Conference in 2006, where I was startled by his accomplishments, well-balanced, well-mannered, demeanor, sociability, and gentlemanliness. Omar has become a musician, photographer, and licensed driver. Now he is a cheerful, pleasant, active, sincere, self-dependent and optimistic young man with demonstrated signs of leadership and intuition.

On behalf of The Ambassadors Research Foundation in North America, it is my pleasure to announce that Mr. Omar Al-Awadi has been selected as the Goodwill Ambassador of the International Educators Without Borders – a global movement that promotes training programs for educators and caregivers of children with special needs everywhere.

*This study was presented as a poster at the 2nd International Genetics Conference held in Kuwait, April 2008 and as a lecture at the Kuwait Down Syndrome Club in Khaldiya. It was translated to Arabic by Dr. Hanan El-Bastaweesy, MD (consultant clinical geneticist).

 


Goodwill Ambassador Omar Al-Awadi with his friend, Amr Wali, a member of the Down Syndrome Society, delivering a musical performance at the Kuwait Genetics conference. (Photo: Dr. Makia Marafie)


Other Articles in this Series:

Talaat I. Farag. "The Marathon of Hope: How to Conquer Any Health Crisis," The Ambassadors Magazine. Vol. 8, Issue. URL: http://ambassadors.net/archives/issue18/educators.htm

Talaat I. Farag. "The Marathon of Hope (Part II): Learning from those who conquered disease?," The Ambassadors Magazine. Vol. 9, Issue 1, URL: http://ambassadors.net/archives/issue19/educators.htm

Talaat I. Farag. "The Marathon of Hope (Part III): Learning from those who conquered disease?," The Ambassadors Magazine. Vol. 10, Issue 2, URL: http://ambassadors.net/archives/issue22/educators.htm

Talaat I. Farag. "The Marathon of Hope (Part IV): The Wheel-chaired Celebrities," The Ambassadors Magazine. January 2008 - Vol. 11, Issue 23, URL: http://ambassadors.net/archives/issue23/educators.htm
 


Prof. Talaat I. Farag, MD, FRCP, FACP, FACMG is a former adjunct professor at Dalhousie University in Canada. He is the founder of The Ambassadors Research Foundation in 1998. Email: tfarag@dal.ca

 



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