Kathryn McGee
Encyclopedia
Kathryn McGee has been recognized for founding two of the first organizations for the benefit of those with Down Syndrome
. She is retired and living in River Forest, Illinois
. She worked seeking recognition, rights and opportunities for people with Down Syndrome
. The birth of her fourth child, Tricia McGee, on March 16, 1960 commenced a decades long effort to bring parents of children with Down Syndrome together to create medical and educational options for such children.
shortly after birth, which is what doctors called a person with Down Syndrome
when Tricia was born, but is now considered an insult. Down Syndrome is a genetic disorder
that was first described in 1866 by British doctor John L. Down. 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. Medical advice in 1960 was typically to institutionalize children with Down Syndrome. After Tricia McGee's birth in 1960, the family pediatrician recommended that the McGees place her in an institution rather than bring her home from the hospital. A few years later when he saw her functioning well at the Alcuin Montessori School in River Forest, Ill., he explained that he had been told in medical school to make that recommendation to people, and said that he would never do so again. After bringing Tricia home and adjusting to the reality that such an infant faces exceptional developmental challenges, Kay and Martin attempted to learn about Down Syndrome and find similarly situated parents in the Chicago area.
laws back then and, with some effort, parents were located and contacted by Kay. . 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 people with Down Syndrome 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 Down Syndrome. The daughter's age surprised Kay, who had been told people with Down Syndrome had short life spans. 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. 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 their 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 Down Syndrome 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 non-disabled 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 was then 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 then “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.
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
.
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. 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. In 1975 the Education for All Handicapped Children Act
was passed, stating that all American public schools accepting federal funds must provide equal access to education for children with physical and mental disabilities, including children with Down Syndrome.
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 NADS) continues to assist disabled children and adults.
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 1990s. 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.
. 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 mail room 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 groundbreaking 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.
Down syndrome
Down syndrome, or Down's syndrome, trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th...
. She is retired and living in River Forest, Illinois
River Forest, Illinois
River Forest is a suburban village in Cook County, Illinois, United States. Two universities make their home in River Forest, Dominican University and Concordia University Chicago. The village is closely tied to the larger neighboring community of Oak Park, Illinois. There are significant...
. She worked seeking recognition, rights and opportunities for people with Down Syndrome
Down syndrome
Down syndrome, or Down's syndrome, trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th...
. The birth of her fourth child, Tricia McGee, on March 16, 1960 commenced a decades long effort to bring parents of children with Down Syndrome together to create medical and educational options for such children.
Birth of Tricia McGee
Tricia McGee was diagnosed as a mongoloidDown syndrome
Down syndrome, or Down's syndrome, trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th...
shortly after birth, which is what doctors called a person with Down Syndrome
Down syndrome
Down syndrome, or Down's syndrome, trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th...
when Tricia was born, but is now considered an insult. Down Syndrome is a genetic disorder
Genetic disorder
A genetic disorder is an illness caused by abnormalities in genes or chromosomes, especially a condition that is present from before birth. Most genetic disorders are quite rare and affect one person in every several thousands or millions....
that was first described in 1866 by British doctor John L. Down. It was discovered to be caused by an extra chromosome
Chromosome
A chromosome is an organized structure of DNA and protein found in cells. It is a single piece of coiled DNA containing many genes, regulatory elements and other nucleotide sequences. Chromosomes also contain DNA-bound proteins, which serve to package the DNA and control its functions.Chromosomes...
by French pediatrician Jérôme Lejeune
Jérôme Lejeune
Servant of God Jérôme Jean Louis Marie Lejeune was a French Catholic pro-life paediatrician and geneticist, best known for his discovery of the link of diseases to chromosome abnormalities...
in July 1958, less than two years before Tricia was born. Medical advice in 1960 was typically to institutionalize children with Down Syndrome. After Tricia McGee's birth in 1960, the family pediatrician recommended that the McGees place her in an institution rather than bring her home from the hospital. A few years later when he saw her functioning well at the Alcuin Montessori School in River Forest, Ill., he explained that he had been told in medical school to make that recommendation to people, and said that he would never do so again. After bringing Tricia home and adjusting to the reality that such an infant faces exceptional developmental challenges, Kay and Martin attempted to learn about Down Syndrome 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. 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 HIPAAHealth Insurance Portability and Accountability Act
The Health Insurance Portability and Accountability Act of 1996 was enacted by the U.S. Congress and signed by President Bill Clinton in 1996. It was originally sponsored by Sen. Edward Kennedy and Sen. Nancy Kassebaum . Title I of HIPAA protects health insurance coverage for workers and their...
laws back then and, with some effort, parents were located and contacted by Kay. . 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
Vitamin
A vitamin is an organic compound required as a nutrient in tiny amounts by an organism. In other words, an organic chemical compound is called a vitamin when it cannot be synthesized in sufficient quantities by an organism, and must be obtained from the diet. Thus, the term is conditional both on...
regimen on people with Down Syndrome 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 Down Syndrome. The daughter's age surprised Kay, who had been told people with Down Syndrome had short life spans. 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
Florida
Florida is a state in the southeastern United States, located on the nation's Atlantic and Gulf coasts. It is bordered to the west by the Gulf of Mexico, to the north by Alabama and Georgia and to the east by the Atlantic Ocean. With a population of 18,801,310 as measured by the 2010 census, it...
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
Certificate of incorporation
A certificate of incorporation is a legal document relating to the formation of a company or corporation. It is a license to form a corporation issued by state government. Its precise meaning depends upon the legal system in which it is used, but the two primary meanings are:* In the U.S.A...
was filed by Kay in 1963 with the Illinois Secretary of State. This group was the first known support group for families of children with Down Syndrome.
Parental hopes for a cure
Cure
A cure is a completely effective treatment for a disease.The Cure is an English rock band.Cure, or similar, may also refer to:-Film and television:* The Cure , a short film starring Charlie Chaplin...
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 their 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
Education
Education in its broadest, general sense is the means through which the aims and habits of a group of people lives on from one generation to the next. Generally, it occurs through any experience that has a formative effect on the way one thinks, feels, or acts...
of doctors to allow greater acceptance that alternatives existed for these children, the push to arrange for preschool education
Preschool education
Preschool education is the provision of learning to children before the commencement of statutory and obligatory education, usually between the ages of zero and three or five, depending on the jurisdiction....
for the children, overcoming the IQ
Intelligence quotient
An intelligence quotient, or IQ, is a score derived from one of several different standardized tests designed to assess intelligence. When modern IQ tests are constructed, the mean score within an age group is set to 100 and the standard deviation to 15...
issues that prevented access to the educable classes in public education
Public education
State schools, also known in the United States and Canada as public schools,In much of the Commonwealth, including Australia, New Zealand, South Africa, and the United Kingdom, the terms 'public education', 'public school' and 'independent school' are used for private schools, that is, schools...
, and opportunity for involvement for the children in the community. In those days children with Down Syndrome were placed in educational programs for "trainable" mentally retarded
Mental retardation
Mental retardation is a generalized disorder appearing before adulthood, characterized by significantly impaired cognitive functioning and deficits in two or more adaptive behaviors...
children rather than "educable" children. For most of those children that meant attending school in segregated centers hidden away from the non-disabled 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 was then 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 then “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 disciplineDiscipline
In its original sense, discipline is referred to systematic instruction given to disciples to train them as students in a craft or trade, or to follow a particular code of conduct or "order". Often, the phrase "to discipline" carries a negative connotation. This is because enforcement of order –...
and language
Language
Language may refer either to the specifically human capacity for acquiring and using complex systems of communication, or to a specific instance of such a system of complex communication...
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
Montessori method
Montessori education is an educational approach developed by Italian physician and educator Maria Montessori. Montessori education is practiced in an estimated 20,000 schools worldwide, serving children from birth to eighteen years old.-Overview:...
.
Later Kay was advised to put Tricia into special education
Special education
Special education is the education of students with special needs in a way that addresses the students' individual differences and needs. Ideally, this process involves the individually planned and systematically monitored arrangement of teaching procedures, adapted equipment and materials,...
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. 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. In 1975 the Education for All Handicapped Children Act
Education for All Handicapped Children Act
The Education for All Handicapped Children Act was enacted by the United States Congress in 1975. This act required all public schools accepting federal funds to provide equal access to education and one free meal a day for children with physical and mental disabilities...
was passed, stating that all American public schools accepting federal funds must provide equal access to education for children with physical and mental disabilities, including children with Down Syndrome.
Mongolism renamed Down Syndrome
In 1965 the World Health OrganizationWorld Health Organization
The World Health Organization is a specialized agency of the United Nations that acts as a coordinating authority on international public health. Established on 7 April 1948, with headquarters in Geneva, Switzerland, the agency inherited the mandate and resources of its predecessor, the Health...
accepted a recommendation to change the name "mongolism" to Down Syndrome. In 1972 Kay formally had the MDC name changed to abandon the pejorative
Pejorative
Pejoratives , including name slurs, are words or grammatical forms that connote negativity and express contempt or distaste. A term can be regarded as pejorative in some social groups but not in others, e.g., hacker is a term used for computer criminals as well as quick and clever computer experts...
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 NADS) continues to assist disabled children and adults.
A national parents organization is created
In 1973 Kay founded the second nationally known support groupSupport group
In a support group, members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic...
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
California
California is a state located on the West Coast of the United States. It is by far the most populous U.S. state, and the third-largest by land area...
and participated in the startup meeting of the organization. The NDSC was incorporated in Illinois, which was its headquarters until the 1990s. Today it is headquartered in Atlanta
Atlanta, Georgia
Atlanta is the capital and most populous city in the U.S. state of Georgia. According to the 2010 census, Atlanta's population is 420,003. Atlanta is the cultural and economic center of the Atlanta metropolitan area, which is home to 5,268,860 people and is the ninth largest metropolitan area in...
. 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 2009 NADS honored Kay McGee as its founder and Kay delivered a speech to over 800 NADS parents and supporters. 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 disabilitiesDevelopmental disability
Developmental disability is a term used in the United States and Canada to describe lifelong disabilities attributable to mental or physical impairments, manifested prior to age 18. It is not synonymous with "developmental delay" which is often a consequence of a temporary illness or trauma during...
. 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 mail room 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 groundbreaking 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
Leadership
Leadership has been described as the “process of social influence in which one person can enlist the aid and support of others in the accomplishment of a common task". Other in-depth definitions of leadership have also emerged.-Theories:...
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.