Jacob, a child with Down Syndrome, enjoying a family holiday and browsing in shops, like any other 5 year old child wouldJacob looking at books and watching TV at age 6 years - Down Syndrome doesn't stop normal development, but social attitudes do. - Jacob, a baby with Down Syndrome - Jacob at one year of age

A History of Kathryn McGee and the founding of MDC and NDSC

The following article was prepared by her son, Marty McGee, to honor his mother and the great role she played in affirmative action related to those with Down Syndrome. My disclaimer is that I am not able to confirm this article personally, I didn’t write it, and my writers had nothing to do with it. However, it appears to be a story of a great soldier for affirmative action, especially for parents of those with Down Syndrome, that definitely needs to be told to encourage others to follow suit in less affirmative action countries.

The world’s first known support group for families of children with Down Syndrome was started in Chicago, Ill. in 1960 by Kathryn (Kay) McGee with the support of her husband Martin (Marty) McGee and others identified herein. It was originally called the Mongoloid Development Council (MDC).

After Tricia McGee’s birth in 1960, the family pediatrician recommended that the McGee’s place her in an institution rather than bring her home from the hospital. He told them that she would never walk or talk. He told them that the medical terminology for her condition was “mongolism”, and that she was a “mongoloid” child. The term was used at that time because of the distinctive, somewhat asian looking, almond shape to the eyes of those with the condition. 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. He said that he would never do so again. The genetic disorder was first described in 1866 by British doctor John L. Down. It was discovered to be caused by an extra chromosome by French pediatrician Jerome Lejeune in July of 1958, less than two years before Tricia was born.

There was NO support group available anywhere in the U.S. at that time for parents of those new babies. There was no one that they could get ANY advice, direction, encouragement, or consolation from. Kay says that Marty looked at Tricia in the hospital room and said “She looks fine to me, lets bring her home.” They decided, without any information or encouragement from anyone, to do just that. When they initially addressed the issue to their young family, Kay and Marty said that Tricia wasn’t quite perfect and that she would need everyone in the family to help her as she grew up. Kay said that she was in a daze for 6 months.

 

Kay soon began to meet other people with children who had the syndrome. 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 lifespans 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 people together, likely including Betty Rundle, and the Donohoe’s. They met in downtown Chicago in November of 1960, probably at the Pick Congress Hotel.

 

At the first meeting, Kay asserted that something had to be done and an organization needed to be formed. A man from the south side of Chicago offered to be President, Kay offered to be Secretary, and the Mongoloid Development Council (MDC) was founded. They never saw him again. In those days women did not take positions running organizations and even being Secretary was radical. Delilah White gave Kay access to the Levinson Foundation files of people in the Chicago area who had a child with “mongolism.” Kay went through the files and identified about 50 families with a “mongoloid” child. Kay contacted them in writing to invite them to each meeting of her new organization. At the second meeting Mrs. White began to attend and advise them. Going forward, MDC held quarterly public meetings at the Pick Congress Hotel, with speakers giving them the latest information on “mongolism”. The first president was not involved, but Kay had a need to make something happen and a vision of how to do it. She set up the meetings and brought in the speakers. The list of parents grew as people heard of the meetings. These were people who were willing to help someone else, so that new parents would have some minimal level of support after the birth rather than nothing, as they had.

 

Kay held the meetings of the Board of Directors of MDC at the McGee in home in River Forest. To encourage participation, she made “wonderful” sweet rolls that are still remembered by early Board members. In about April 1961, at such a meeting, Marge and John Lee came and became involved. John Lee became an active President and arranged non-profit status for the organization. Marge, who became Kay’s right hand associate in all of her efforts throughout the years, uses words like “Initiator”, “Pioneer”, “Prime Mover”, and “Driving Force” when taking about Kay’s efforts. She says that Kay immediately began the work of breaking down the barriers that held these children down. 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, away from the normal student community.

 

Kay characterized Marge Lee as the most knowledgeable and involved person there was. She was dedicated to helping everyone. Kay and Marge went to hospitals and met the nurses who worked in the nurseries. They pleaded with them to call whenever a child was born with “mongolism”. That was how they initially found out who needed their counsel. They would visit the new mothers and tell them all they knew, with no authorization from the hospital. Their message was simple, “You can and should strongly consider taking your baby home because they can do well.” Since amniocentesis was not available until 1965, and not commonly used for years thereafter, parents of the era had no advance notice of their baby’s condition. A hospital doctor would give them the diagnosis after the birth. Most doctors continued to recommend institutionalizing the babies and were not aware of this effort to educate and encourage their patients. The early days were MOST difficult. It took years for the hospital staffs and especially doctors to become educated about the potential for “mongoloids” to do well and about the availability of MDC counseling.

 

Kay took all the phone calls to MDC and did all of the secretarial work. She was the driving force that created and sustained the organization until 1975. She had a separate phone line installed at the house, taking all the calls from new parents of children diagnosed with “mongolism”, later referred to accurately as Down Syndrome. Tricia often answered the phone before Kay got there. Imagine the emotions of a dazed new parent when Kay invariably would mention that the child who answered the phone was a child with Down Syndrome. She probably sounded like the Savior at that moment. New parents were willing to jump into the boat that Kay had, because there was no boat available anywhere else to help them. Now help is readily available, and people today cannot comprehend what it was like back in 1960 for parents to get no information, even from their pediatrician, when they were told that their new baby had “mongolism”!

 

Kay was Executive Secretary. She wrote the original newsletters, set up the meetings, brought in the speakers, wrote thank you letters to every contributor, and answered the phone for the organization among other things. After some years, Kay asked for and was paid $51 per quarter for her work, which she had determined to be the minimum the federal government requirement in order for Kay and thus Tricia to become eligible for Social Security and Medicare. One of the Board members was concerned that $51 was too much at the time, which shows the meager beginnings of the group.

 

In the early 1960’s Kay met Dr. Albert Rosanova, who had an office in north Oak Park. He was very involved in ideas for treatment of “mongolism”. Dr. Rosanova pointed MDC to Dr. Hellmut Haubold, from Munich Germany, who had a possible treatment. The Haubold Treatment also involved nutritional therapy. Dr. Haubold spoke at a 1965 MDC meeting, in his heavy German accent, about the great importance of maintaining the good health of the children, including beneficial surgery to remove tonsils. He also stressed that they needed good social, intellectual, and educational stimulus. These are concepts that are obvious today, but were not understood in the early 1960’s. Other research involved injecting embryonic cells from unborn sheep and studying urine samples to find a link. Dr. George Smith was conducting blood studies to try to understand the condition. The MDC parents welcomed the scientific research in hope of finding a cure for “mongolism”.

 

MDC incorporated its organization on September 10, 1963. In 1965 the World Health Organization began to promote a recommendation to change the name “mongolism” to Down Syndrome. On April 10, 1972 MDC changed its name to National Association for Down Syndrome (NADS), named for Dr. John L. Down in England. Dr. Rosanova sent letters threatening to sue over the use of the name NADS because he started a similar organization, National Mongoloid Council, which is no longer active. Notable today is the almost complete cessation of use of the old term “mongoloid”, not only medically but also in social contexts.

 

Levinson Foundation, which was part of Cook County Hospital, continued to provide guidance to the parents through the organization. They provided speakers for the meetings. They instructed in the importance of things like teaching the children to chew food and to stop feeding them baby food. They told parents to teach the children tongue exercises, such as trying to touch their nose and their chin with their tongue. They were told to push their child’s tongue back into their mouth whenever they tried to leave it visible. Such simple things were not obvious to parents then. Nothing was obvious to these pioneers. Speech therapist Barbara Witt was involved with these lectures. Mrs. White wrote a book that discussed her work. Heart problems are often present with Down Syndrome, although Tricia outgrew hers.

 

A significant part of what was conveyed to those parents was psychological. In those days there was little recognition that important decisions about their child’s future were influenced by the parents’ ego. Some were reluctant the do the best things for their child because it meant admitting that they had a child with a mental disability. There was a societal misconception that the child’s disability reflected on the parents and that it was somehow their fault. Such misinformed thinking on the part of outsiders made decision-making even harder for parents. MDC tried to guide parents through what were ego-deflating processes.

 

In that time frame Kay got MDC members in Chicago to participate in the Knight’s of Columbus’ new Tootsie Roll sales campaign, selling them on the street corners of Chicago. The Knights had just begun the program to raise money for “retarded children”, so Kay contacted all of the K of C Councils in the Chicago area to offer to participate. The money that was raised was used to pay for stamps and for meeting halls. The Board collected very low dues from the members. Kay continued to send letters to everyone whether they contributed or not. She and all of her friends took turns hosting dinners at which each of them contributed $10 toward the expenses of MDC. In 1964 they had $515.21 in their Treasury.

 

Kay began to bring in donations. She met an area woman, Mrs. Kirkley, who attended some MDC meetings trying to help a foreign born employee who had a child with the Syndrome. At her death in the late 60’s she gave $100,000 to MDC because of her respect for Kay’s dedication. That got the organization on its feet financially. Bill Gent invested the $100,000 that the organization earmarked for a facility. The issue of getting a facility for the future was very important for many of the people involved. They knew that they each had a need to provide care that would outlive them all, and they hoped to address it somehow.

 

A speaker came from Belleville, a home for mentally disabled. He urged the parents to let their young adult move into a residential facility at the conclusion of whatever schooling they had. He explained that it would allow for their socialization with other young adults while they were young, rather than keeping them at home where they could be isolated, unless the parents made the efforts to allow them to socialize. He said, “Don’t wait until you are 90 years old to come to us to take your child. By that time they will not be able to change and integrate into our environment. Do it now.” Each parent had to decide whether to keep their child at home or to send them to a facility after their education was completed. There were successes and failures for both routes. If and when to move a young adult into a facility is still an individual decision to this day. It was debated within MDC. A group called and spoke with Kay about opening a home for the mentally disabled. It was later called Lamb’s Farm.

 

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 mental health. People had to fight for that right. The significant mindset that these children were trainable but not educable was being brought into question in those days. Mrs. White introduced Kay to her friend Julia S. Molloy who was an educator and speech therapist. She was principal of a Special Education school, Orchard School in Skokie, which was later renamed for her. She had the belief and said that these children could be educated in a separate training environment, which was a step forward. She wrote “Trainable Children” in 1963. The mentally retarded children of that era were not taught to read and write. People started to discover that early education was needed on basics that other children pick up naturally. Tricia started with Virginia Fleege at Alcuin Montessori School at age 3. Later Mrs. White urged Kay to put Tricia into Special Education through the public school system instead. 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 show them how to conduct themselves with others, as was their home.

 

Mrs. Molloy was very helpful when she spoke to the membership group. She reminded everyone to say “a person with Down Syndrome”, not a Down Syndrome person. Each one was first a person. She insisted that people learn to discipline their child. The organization had trouble making parents understand the need for such discipline. They explained with examples such as “You will not even be able to get on public transportation with your child if you allow them to act without discipline. They need it just the same as any child does.”

 

Mr. Byrn Witt, who was principal of a school for mentally disabled in Arlington Heights, was brought in by Mrs. Molloy and he spoke to the group from time to time. He took a paid position with NADS at one point.

 

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 in River Forest rather than the trainable classes. The special education teachers had learned how to teach special kids. They gave her the necessary attention, rather that expecting her to progress with the regular students. The fact that Kay arranged for Tricia to ride a bus or taxi to school was a huge victory. Many parents followed suit, getting their Down children tested for IQ and then pushing to enroll them into the educable classes. The Oak Park- River Forest special education school system proved that they could learn. Most of Tricia’s friends at Misericordia, many who are very smart, cannot read or write or even play bingo without Tricia’s help. A continuing debate is whether mainstreaming, putting these children in regular classes, helps their development or hurts it. Tricia went to Oak Park-River Forest High School in the 70’s, participating in special education classes throughout the school campus.

 

The man who was head of Special Education in the Oak Park-River Forest School System broke with tradition to allow these students into educable classes. He later became head of the School Board. Kay spoke up loudly at a School Board meeting when some people tried to oust him from his job. She told them that, because of his success with special education, other school boards would fight to get him. Later he wrote to her to thank her for saving his job. Kay still has that letter.

 

A subsequent head of Special Education told Kay not to let Tricia graduate from Oak Park-River Forest High School. By law at that time, if she did not graduate from high school then the school would have to send her to a facility for post secondary educational services. She went to St. Coletta’s, a Wisconsin facility, for 2 years; paid for by the school system. Brenda’s Law in Illinois subsequently has allowed these students to receive a diploma and retain eligibility for such assistance. Tricia has resided since then in an independent living 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. It is a nationwide model for helping people live with dignity. The most encouraging recognition to report is that adults with Down Syndrome continue to learn, interact, and develop throughout their lives. This continued development may progress more so than adult development of the general population. Tricia is a perfect example of that development.

 

Dr. Smith from Rush Hospital spoke at some meetings, urging parents to have plastic surgery for their child so they would look normal. After much discussion many people concluded that the distinguishing features associated with Down Syndrome gave people notice that they were dealing with a person with special needs, which was a good thing. Many felt that expectations would be too great if people were unaware of their situation. Some surgery of this type was undertaken.

 

“Up The Down Staircase” was a popular book about school in those days. Kay named the largest conference she ever did on Down Syndrome with that book title, as a play on words. The Association for Retarded Citizens (ARC) was holding their convention at the same place and time so they invited NADS to have a mini-convention. When NADS drew more people to its conference than ARC drew to their convention, the ARC organization became much more interested in working closely with NADS.

 

In 1972, when two Doctors from California contacted Kay to ask her help in starting a Down Syndrome group to work with The National Association for Retarded Citizens (NARC), she went to California for the startup meeting of the organization. Kay thus founded the second nationally known support group for Down Syndrome families called National Down Syndrome Congress (NDSC) in 1973. The other founders were Dr. Karol Storm, Dr. William Bronston, Dr. Richard Koch, Dr. Betty Green and George Johnson. She was the first Treasurer and arranged tax-exempt status for the group. The organization was incorporated in Illinois, where it was headquartered until the 1990’s. Now it is headquartered in Atlanta. They have held a national convention for 36 straight years at different sites throughout the country and international conventions in seven countries.

 

Marty McGee was very active throughout Kay’s involvement. In the early 1960’s Ed and Kay Murtha attended some meetings. He was able to create address labels for all of the letters that Kay was sending out. He also reproduced the letters for her. Kay Murtha was one of the founders of STAR which became Voice of the Retarded. She is doing well and their son Ned is at Misericordia. Bob and Mary Mead were active Board members. He was President at one time. She is doing fine and their son Scott is at Misericordia. Ed and Imelda Lapinski were on the Board. Bill Gent was Treasurer and invested MDC money once they got some. John Gleason was on the Board and his wife Barbara was involved. Their daughter lives at home. Betty Rundle is well and her son is at home. The Donohoe’s were Board members. Their daughter Joan is at Misericordia. Mr. Gene Casper, who did fundraising especially at Sunbeam where he worked, was a Board member and his wife Cil was involved. Sometime later Lucille Msall became a Board member. She was President at one time. Her daughter is at L’Arche. Jack and Loretta O’Malley’s were Board members too. Jim and Mary Logan were there and their son James is at Misericordia. The Dunne’s were involved. Mary is doing well and their son Tom is at Misericordia. Also Jim Touenaka and Dale Rees were there. Dale’s son Eric is at Misericordia. Ed and Mary McNeal were there too. Don Stone ran benefits at theater shows and gave proceeds from some performances to MDC, so the members bought many theater tickets! Jim Donovan was active. Ron and Betty Krupp got involved early on. He was president in the early 70’s. Dave and Joyce Zanoni were involved early and he was President in the mid 60’s.

 

In 1975 Kay decided to step down as Executive Secretary of NADS. The Berman’s took the job for some months and stepped aside. The Organization then hired 2 part time people to do the job. NADS remains headquartered in Chicago and has some national reach. Having become a Board member just before Kay stepped down, Sheila Hebein took the Executive Director job in the late 1970’s and continued to advance the excellent work of the organization to the present. Sheila just stepped down as Executive Director in 2009.

 

 

Epilogue, to provide perspective:

The significance of what Kay McGee did is almost lost 50 years later in a country that can no longer conjure the mindset of Americans of that time. As the work opportunities and relative pay for women becomes more equal to that of men with each passing year, the circumstances of those days fades from memory.

During World War II women took and held most of the jobs that men left when they went to fight the war. They proved that they had the ability to handle those jobs as well as the men did, but they happily relinquished them back to the returning soldier boys after the war. The country then settled into a prosperous time now called the baby boom generation. Women somehow were again relegated to tight boundaries doing work as nurses, secretaries, teachers and waitresses; with few other options.

In 1960 Sirimavo Bandaranaike of Sri Lanka (Ceylon) made history as the first woman ever elected by her party to lead a nation as Prime Minister, after her husband was murdered. Indira Gandhi followed in 1966 as Prime Minister of India. In 1969 Golda Meir of Israel became the world’s first Prime Minister to come from a non-political family and in 1979 Margaret Thatcher became Prime Minister of Britain. They came from modest beginnings. Of the other women who have led their countries, most have done so as part of political family dynasties.

In 1961 Bella Abzug became a founder and national legislative director of Women Strike for Peace. Betty Friedan wrote the best selling book “The Feminine Mystique” in 1963, beginning the modern women’s movement and leading to the founding of the National Organization for Women (NOW) in 1966. In 1963 the Equal Pay Act was passed by Congress, promising equitable wages for the same work, regardless of the race, color, religion, national origin or sex of the worker. Next, Title VII of the 1964 Civil Rights Act was passed, prohibiting employment discrimination on the basis of sex as well as race, religion, and national origin. In the 1960’s many women found their efforts blocked by men who felt leadership of social movements and businesses was their province, and that women’s roles should be limited to fixing food and running mimeograph machines. These young women began forming their own “women’s liberation” organizations to address their role and status within progressive movements and within society at large, and they were called feminists. The Equal Employment Opportunity Commission ruled it illegal in 1968 for newspapers to post separate help wanted ads for men and women. In 1973 the Equal Rights Amendment was passed by Congress. The wording of the ERA was simple: “Equality of rights under the law shall not be denied or abridged by the United States or by any state on account of sex.” By 1982 it had not yet been ratified by the required 75% of states. In the 1970’s only 4% of middle managers in Fortune 500 companies were women. There have been 11 women CEO’s of Fortune 500 companies. There is no evidence of women in management of companies during the 1960’s.

It is notable that none of the dates above were prior to 1960. At that time a few women had made great personal achievements, but there was almost complete resistance to women running let alone starting any organizations other than educational ones. The magnitude of what Kay was able to do in 1960 cannot be easily comprehended from the current perspective of relative equality of the sexes. It came out of her need to get something done. Her work pre-dated the torrent of accomplishment by women in these intervening years and may well have empowered others to do great things.

The work that Kay did in 1960 was ground breaking for many reasons. The medical community was indifferent to or opposed to her effort to educate and support anyone, including their own, about the Syndrome at that time. There were no rights for individuals with the Syndrome in those days. Society had not yet conferred on women the right to run or take a leadership role in any organizations outside their boundaries. Kay’s decision to start MDC was radical at that time. She faced down all odds and broke new ground because a job needed to be done. To this day she has taken no credit for her work.

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