"There is one thing stronger than all the armies of the
world, and that is an idea whose time has come."
–Voltaire
The Reawakening 1950–1980
1947–1980 The Parents' Movement
During the late 1940s and early 1950s, there was a reawakening of hope and possibilities for persons with disabilities. Frustrated and angry over poor living conditions and the lack of community services, parents began to organize and demand services for their sons and daughters. The efforts of a few groups of parents, scattered across the United States, led to a strong, national movement of parents who declared "The Retarded Can Be Helped."
During the 1960s and 1970s, the parents' movement worked on improving conditions in state institutions; creating community services, educational and employment opportunities; initiating legislation; and challenging the conventional wisdom that persons with disabilities could not be helped. After years of treating people with mental retardation and other disabilities with guilt and shame, people began to speak about their family members with disabilities.
President John F. Kennedy, whose sister Rosemary had mental retardation, launched the President's Panel on Mental Retardation and developed a "plan to combat mental retardation." Parent organizations filed lawsuits to force states to recognize the civil and legal rights of their children. Laws were passed to enforce these rights, services were established and delivery systems were required to provide appropriate services to children and adults with disabilities. Actions were begun to close public institutions and assure that people with disabilities could live in and be a part of the natural community.
The unified efforts of parents resulted in a significant shift in the methods and approaches of providing services to people with disabilities. The stigma of having a child with disabilities was easing. The contributions of parents were greater during this 30 to 40 year period than at any other time in our country's history.
President John F. Kennedy launches the President's Panel
The First Parent Groups
As early as 1933, the Cuyahoga County (Ohio) Council for the Retarded Child was established. In 1936, the Children's Benevolent League was organized and later became the Washington Association for Retarded Children. A few years later, in 1939, the Welfare League for Retarded Children was started in New York. By 1950, a total of 88 parent groups with a membership of 19,300 persons had been established in 19 states.
At first, parents came together a few at a time, usually in someone's home. In both New York and New Jersey, parents looked for support by placing advertisements in the local newspaper: "Are there any other parents out there who have a retarded child? Would you be interested in meeting and talking about this with another parent?"
The initial goal of the parent groups was to provide support to each other due to a growing concern they had for their children, many of whom lived in large state institutions.
ARC Parents Organizing in the 1950s
Like millions of other unfortunate Americans I am the parent of a mentally retarded child.
In this county we have no special classes, no nursery schools, no community or child guidance centers to give our children what parents of every normal child take for granted.
If you have such a child yourself, or are interested in this problem, you are welcome to attend a meeting at 8 o'clock Thursday evening at the home of Mrs. John Wheeler.
The Right Time for Organizing
The United States enjoyed an economic boom following the Great Depression and World War II - increased leisure time, a restored tax base, greater educational opportunities and an increase in college admissions due to the GI Bill, and new job opportunities. People were able to turn their attention to mattress other than economic survival. Parents of children with disabilities were likewise able to take advantage of this recovery period and began organizing at state and national levels.
While conditions were improving for most people in our country, including persons with disabilities, public institutions remained overcrowded and understaffed, and few supports and services were available in the community. Parents of children with disabilities responded to this absence by forming their own support and advocacy groups.
The Parent Groups and Professional Organizations
In 1947, the American Association on Mental Deficiency (AAMD) held its annual convention in St. Paul, Minnesota. Professionals at this gathering promoted the emerging parent movement. Although some professionals were a little fearful of the parents' demands, they welcomed their efforts in lobbying for better institutions and encouraged them to keep up their work.
A year later, at the 1948 AAMD convention in New Orleans, part of the agenda was devoted to parent group action. Speakers included Mr. Reuben T. Lindh of the Minneapolis Association of Parents and Friends of the Mentally Retarded, and Mrs. L.H. Riggs of the Hamilton County (Ohio) Council for Retarded Children.
During the 1949 AAMD convention, the suggestion was made to incorporate the parent groups into the AAMD. Incoming president Mildred Thomson, however, thought that the best way that the AAMD could support parents was to assist them in developing their own organization. A steering committee was established and plans were made for a national parents' conference to be held later that year.
In the fall of 1950, the first national parents' conference was held in Minneapolis with Minnesota Governor Luther Youngdahl as the featured speaker. Ninety persons from across the country were in attendance.
Mildred Thompson
Governor Luther Youngdahl at the First Parents' Conference
Minnesota Governor Luther Youngdahl
The point is this, ladies and gentlemen, the retarded child is a human being … And for reasons for which neither he nor his family are responsible, he is retarded. He has the same rights that children everywhere have. He has the same right to happiness, the same right to play, the right to companionship, the right to be respected, the right to develop to the fullest extent within his capacities, and the right to love and affection…
We cannot discriminate against this child, deny to this child the rights other children have because of the one thing that neither he nor his family can help, because he is retarded …
He has a right to these things and his parents have a right to know that he has these rights. For they, too, are entitled to peace of mind about what is happening to a retarded child separated from them.
Dr. Gunnar Dybwad later noted, "What Governor Youngdahl had to say was indeed prophetic. He was at least two decades ahead of the times." At this conference, the National Association of Parents and Friends of Retarded Children was formed. The primary goal of the Association was to promote "the general welfare of the mentally retarded of all ages everywhere: at home, in the community, in institutions, and in public, private, and religious groups."
Prior to this time, people with mental retardation had no one to speak on their behalf. Now, parents were organizing and assuming leadership roles, and telling professionals, "We speak for our sons and daughters."Building on this momentum, other national organizations were started. In 1949, the United Cerebral Palsy Association was founded by parents of children with cerebral palsy and, in 1950, the Muscular Dystrophy Association was founded by families who had personal connections to muscular dystrophy.
The National Association of Parents and Friends of Retarded Children was first registered as a nonprofit organization and, in 1953, renamed the National Association for Retarded Children.
Over the next 20 years, the National Association changed its name several times – to the National Association for Retarded Citizens in 1973, the Association for Retarded Citizens of the United States in 1981, and finally The Arc in 1992. The Arc continues to be one of the largest voluntary organizations. Comprised of family, friends, self-advocates, and professionals, the organization has grown from its few founding members in 1950 to 106,897 members in 1967. Membership reached a peak in 1977 with 220,936 individuals.
Reasons Why Parents Organized
Woodhull Hay, of the National Association for Retarded Children, cited seven reasons why parents united to form groups:
- Evidence that institutions were limited in what they could do for children;
- Increased awareness that regular public school programs were unsuited for such children
- The need to disseminate knowledge and information concerning mental retardation;
- The need to challenge the validity of the finality in the words, "Nothing can be done for your child;"
- The desire of parents to learn what more could be done for these children and to pursue projects on their behalf;
- The need to strengthen the growing conviction that the responsibility is social, i.e., money should be provided for building a fuller life for the mentally handicapped; and
- The realization that it was not enough spiritually just to care for one's own child.
Concern Over Professional Neglect
Parents were not only concerned about obtaining services for their children but also about professional neglect and rejection. Profesional literature of the 1940s and 1950s cast a very negative light on parents of children with disabilities, claiming that they "often felt inadequate; blamed themselves for their child's condition; are defensive, confused, and angry; and tend to be either overly protective and overly indulgent, or overly strict with their child."
All too often, the advice from professionals was confusing: "Send your child to an institution." "Keep her at home." "Wait, he'll grow out of it." While they had little more than advice to offer, the professionals determined what services would be available. Programs and services in the community that would actually benefit and support families were rare. Parents, seeing the failure of public institutions and the continuing lack of community services, took the lead and assumed control of planning and delivering services that were actually needed and would be helpful for their sons and daughters.
Phil Roos, a parent and professional, recorded his early experiences with professionals:
Audio: Phil Roos, Parent and Professional
"I had suddenly been demoted from the role of a professional to that of the parent as patient; the assumption by some professionals that parents of a retarded child are emotionally maladjusted and are prime candidates for counseling, psychotherapy, or tranquilizers.
My attempts to point out the many indications of developmental delays and neurological disturbances were categorically dismissed as manifestations of my emotional problems. I was witnessing another captivating professional reaction: the 'deaf ear syndrome'; the attitude on the part of some professionals that parents are complete ignoramuses so that any conclusion they reach regarding their own child is categorically ignored.
Later I found that suggestions I would make regarding my own child would be totally dismissed by some professionals, while the same suggestions made by a professional about other children would be cherished by my colleagues as professional pearls of wisdom."