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Kathryn McGee (Kay, born Kathryn Greene on May 6, 1920, in Chicago, Illinois) has been recognized for founding two of the first organizations for the benefit of those with Down Syndrome. (One of these organizations is identified as the oldest Down Syndrome parent organization in the United States at http://www.nads.org/pages_new/news/ruletheworld.html). She is retired and living in River Forest, Illinois. She was a tireless worker and organizer seeking recognition, rights and opportunities for the mentally disabled. The birth of her fourth child, Tricia McGee, on March 16, 1960 commenced a decades long effort to bring parents of children with disabilities together to create medical and educational options for the wide range of capabilities of those with such disabilities.

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Birth of a Child with a Disability

Tricia McGee was diagnosed as a mongoloid. At the hospital Kay and her husband, Martin McGee, were advised by a trusted young pediatrician not to take her home as she would be unable to learn and would be unable to overcome defects in her health. As noted below, the modern medical term for this condition is Down Syndrome. The genetic disorder was first described in 1866 by British doctor John L. Down. http://medical-dictionary.thefreedictionary.com/Down%27s It was discovered to be caused by an extra chromosome by French pediatrician Jérôme Lejeune in July 1958, less than two years before Tricia was born http/::www.nytimes.com:1994:04:12:obituaries:dr-jerome-lejeune-dies-at-67-found-cause-of-down-syndrome.html Medical advice was typically to institutionalize such children. After bringing Tricia home and adjusting to the reality that such an infant faces exceptional developmental challenges, Kay and Martin attempted to learn about mongolism and find similarly situated parents in the Chicago area.

Early Experience and Efforts at Organizing Parents

Within six months Kay determined that there were children with Down Syndrome in communities but that they were not visible as society was not accepting and parents were protective of their vulnerable family members. http://www.scribd.com/doc/11545822/Full-2000-NADS-Annual-Report-with-History-of-Down-Syndrome-Organization In late 1960 Kay invited those parents she was able to contact to her River Forest home to discuss the medical and developmental issues that all such parents faced. Kay notes that obtaining lists of those with the medical condition was challenging but there were no HIPAA laws and, with some effort, parents were located and contacted by Kay. (Kay’s speech when honored as the founder of the organization and the early challenges of her efforts is available at http://www.youtube.com/watch?v=OHNXfIAAUfg ). She heard about the Dr. Julian D. Levinson Research Foundation for Mentally Retarded Children at Cook County Hospital in Chicago. The Foundation wanted to test a vitamin regimen on “mongoloids” and evaluate the results.

Delilah White was a psychologist who was a leader at the Levinson Foundation in late 1960. Delilah introduced Kay to a woman who had a 40 year old daughter with “mongolism”. The daughter's age surprised Kay, who had been told of short life spans for mongoloids. Kay decided to get a group of similarly situated people together and organize a meeting to hear from this woman, who was scheduled to move away to Florida the following week. She got about 15 parents to attend. They met in downtown Chicago in late 1960, probably at the Pick Congress Hotel. Within the following year the group expanded and Kathryn organized the Mongoloid Development Council (or MDC). A Certificate of Incorporation was filed by Kay in 1963 with the Illinois Secretary of State. http://www.scribd.com/doc/15346177/Original-Mongoloid-Development-Council-Charter This group was the first known support group for families of children with Down Syndrome.

Parental hopes for a cure or major breakthrough were an initial aspiration of the young organization. Soon the focus turned to the best practices to assist the physical and emotional development of the Down Syndrome infants and children to allow each person to maximize her potential, limited though it might be in some cases. Kay immediately began the work of breaking down the barriers that limited the development of such children. Kay began to assemble the building blocks that were determined to be necessary by MDC. Those blocks included the ongoing effort to get into the area hospitals to provide initial counsel for new parents, education of doctors to allow greater acceptance that alternatives existed for these children, the push to arrange for preschool education for the children, overcoming the IQ issues that prevented access to the educable classes in public education, and opportunity for involvement for the children in the community. In those days children with mongolism were placed in educational programs for "trainable" mentally retarded children rather than "educable" children. For most of those children that meant attending school in segregated centers hidden away from the normal student population.

Kay also began an initiative to meet with new parents of children born with Down Syndrome in the Chicago area before the parents were forced to make the critical decision as to giving up their infant as typically recommended by the medical community. The word of such births was often conveyed to Kay by nurses or hospital personnel. Kay and fellow volunteers would often rush to meet new parents shaken by the sudden surprise of a major birth defect with virtually no information on the condition or prospects of the child. Kay notes there was “no way to Google information on the condition.” Kay had the Mongoloid Development Council telephone line ring into her kitchen and she often fielded calls from new or frustrated parents reaching out for suggestions and support. In later years it was often Tricia who would initially answer the calls and many callers were shocked to learn that the polite person who answered their call was a child with Down Syndrome.

Expansion of Educational Options

As the children of MDC members began to achieve developmental milestones at a delayed but steady pace there was considerable focus on the need to work constantly on discipline and language skills and physical actions that might be accomplished unconsciously by children without a disability. It had become increasingly apparent that early education was needed on basics that other children pick up naturally. At age 3 Tricia began education outside the home at Alcuin Montessori School. In 1963 President Kennedy signed Public Law 88-164. It required that all physically disabled, mentally retarded, deaf, speech and visually impaired, and hard of hearing children must be educated. The law was hugely important because it allowed for the beginning of a new era of Federal support for those with disabilities. Though the law was enacted MDC members learned that parents still needed to demand that appropriate educational opportunities would be provided.

Later Kay was advised to put Tricia into special education through the public school system Montessori School was beginning to run grade schools at the time, but many teachers in the public schools had special education degrees which made it a better place for Tricia and other such children. They realized that these children had to learn sociability in order to fit into society. They had to learn discipline. Many are naturally prone to want to hug and kiss everyone they meet. [1]. Public schools were an important place to correct such actions and assimilate those with Down Syndrome in an environment in which they could observe how to conduct themselves with others. Kay determined Tricia’s IQ through tests at Levinson Foundation and then she pressured the public school system not to relegate her to trainable classes. In 1966 Tricia was the first child with Down Syndrome who was put into the educable class in first grade rather than the trainable classes in River Forest.

Mongolism Renamed Down Syndrome

In 1965 the World Health Organization accepted a recommendation to change the name "mongolism" to Down Syndrome. In 1972 Kay formally had the MDC name changed to abandon the pejorative term, mongoloid, from the organization’s name. She signed the new articles of association which created the National Association for Down’s Syndrome. The apostrophe and s were subsequently dropped and the National Association for Down Syndrome (or NASDs) continues to assist disabled children and adults.

A National Parents Organization is Created

In 1973 Kay founded the second nationally known support group for Down Syndrome families. When two Doctors from California contacted Kay to ask her help in starting the National Down Syndrome Congress (NDSC) she encouraged those that contacted her to call an organizational meeting. She went to California and participated in the startup meeting of the organization. The NDSC was incorporated in Illinois, which was its headquarters until the 1990’s. Today it is headquartered in Atlanta. They have held a national convention for 36 years at different sites throughout the country and international conventions in seven countries.

Later Life and Legacy

In October of 2009 NADS honored Kay McGee as its Founder and Kay delivered a speech to over 800 NADS parents and supporters. http://www.nads.org/pages_new/news/mcgee_tribute.html and http://www.youtube.com/watch?v=S0FGgKQuscE Tricia was also introduced and she thanked the assembled audience and confidently left the podium to her mother. Tricia lives in an independent apartment at Misericordia Heart of Mercy on the north side of Chicago. Misericordia is now home to over 550 children and adults with developmental disabilities. http://www.misericordia.com/ It is a nationwide model for helping the disabled live with dignity. It has become apparent that adults with Down Syndrome continue to learn, interact, and develop throughout their lives. Tricia is an example of that development. She lives an active life working in the mailroom and bakery and reading, shopping and cooking with her roommates.

Kay and her family remain involved in Misericordia. The efforts and success of Kay in the 1960s was ground breaking for many reasons. Many in the medical community were indifferent to or opposed to her effort to educate and assist parents and those with Down Syndrome. The public held doctors in such high esteem that their wisdom was seldom questioned. That a young woman would be so bold as to suggest the medical community might rethink its approach to children like hers was nearly an outrage to some doctors. There were no rights for individuals with Down Syndrome in those days and society and schools were not used to dealing with those with disabilities. Society had not yet conferred on women the right to run or take a leadership role in organizations. Kay's decision to start MDC was radical at that time. She faced down all odds and broke new ground because she was determined that her cause was critical. The thriving organizations that she founded and the wide acceptance of those with Down Syndrome proclaim her success and that of the organizations she established.

References

  1. ^ (see Dennis McGuire and Brian Chicoine(2006). Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challengesa, MD. Woodbine: Bethesd. p. 129. IBSN-10:1-890627-65-8 in which the authors acknowledge the truth of the stereotype that those with Down Syndrome are unusually loving and affectionate)

http://www.nads.org/pages_new/news/mcgee_tribute.html http://medical-dictionary.thefreedictionary.com/Down%27s http://www.nytimes.com:1994:04:12:obituaries:dr-jerome-lejeune-dies-at-67-found-cause-of-down-syndrome.html http://www.scribd.com/doc/11545822/Full-2000-NADS-Annual-Report-with-History-of-Down-Syndrome-Organization http://www.youtube.com/watch?v=OHNXfIAAUfg http://www.scribd.com/doc/15346177/Original-Mongoloid-Development-Council-Charter http://www.youtube.com/watch?v=S0FGgKQuscE Tricia http://www.ndsccenter.org/about/history.php

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