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Gunnar Dybwad

Reflections on Our Advocacy History

Reflects on our advocacy history, names attacks on FC as our foremost challenge

Gunnar Dybwad, Professor Emeritus at Brandeis University, internationally-known human rights advocate and a founder of the Autism National Committee, delivered a stirring keynote address at the Committee's First Annual Conference and Third Annual Meeting held on November 14-15, 1993, in Arlington, Virginia.

In the belief that human rights advocates must better understand their own history, Prof. Dybwad led the conference attendees on a tour down the decades of the 20th century. He began his narration with the year of his birth, 1909: a "special year" when Dr. H.H. Goddard brought Alfred Binet's practical, pragmatic test of the learning needs of school children from France to the United States, where it quickly metamorphosed into the first IQ test. Don't blame Binet for the Stanford-Binet test, cautioned Dybwad: this method of labeling and ranking the mental worth of children is an American invention.

With World War II came a special derivative of the IQ test, called the Army Alpha. Administered to the troops as part of a grand social experiment, by the terms of the Army Alpha fully 2/3 of the Army's troops were found to be mentally retarded! Or maybe the test was simply not appropriate. Prof. Dybwad declined to "bore" his audience with the "ridiculous philosophy of mental age" inherent in IQ testing, whereby, for example, a woman of 25 years could be ascribed a mental age of 5 and expected to think and act like a 5-year old. In all his long career, Dybwad attested, he had never met such a person.

Dybwad reflected on the inscrutable forces which selected IQ 50 to divide the school population between trainable and educable mentally retarded, and on the ever-changing line dividing retardation from intelligence. In 1959, a little committee of what was then known as the American Association on Mental Deficiency decided that what had previously been known as "borderline intelligence" would henceforth be known as "borderline mental retardation," thereby swelling the ranks of people with mental retardation. In 1973, 8 million individuals from those ranks were just as instantly "cured" by changing the definition. Prof. Dybwad declared that the "exciting" new definition of mental retardation which was issued last year, "brings to mind Anderson's story of the Emperor's New Clothes: there has been no change, just the same old dreary thing."

1909 was also the fateful year in which H.H. Goddard wrote a book (finally published in 1912), called The Kallikak Family, a study in the heredity of feeble- mindedness, which resulted in tens of thousands of sterilizations of both men and women and caused states to build institutions for the purpose of removing feeble- minded individuals from the breeding population. Not only mental disabilities but all disabilities quickly came to be considered bad stock which had to be eliminated. "We talk so much about Nazis," reflected Dybwad, "but we should look at what our own country has been doing."

A formula which can still be found in text books, and which was published only a decade ago in the influential medical journal Pediatrics, purports to measure the quality of life, thereby allowing physicians to scientifically decide which newborns will be operated on and which left to die. It reads QL = NE x (H+S), where QL is the quality of life expected for the newborn, NE is the natural endowment (read "degree of impairment") with which the child is born, H is the contribution of the home, primarily income but including the educational level of the parents, and S is the contribution of Society (presumably minimal for those with a low H). Railed Dybwad, "You couldn't ask for a more pointed racist formula." Yet it was used at the University of Oklahoma as recently as the early '80s to decide which newborns with disabilities to attend to. The Apgar Scale has lent itself to similar purposes, though Dr. Apgar insists it was never intended as a formula for decision-making.

In 1909 Clifford W. Beers, a young businessman who had a mental breakdown and recovered to write about it in A Mind That Found Itself, created the National Committee on Mental Hygiene to move us away from state hospital custodialism and to emphasize prevention. The National Committee was doing well until the time when Freud gave his first lecture in this county, heralding a shift in ideas about mental illness and a waning of interest in the Committee's agenda. The Committee later merged with the National Mental Health Foundation, an organization of conscientious objectors who had worked in institutions during WWII and felt an obligation to improve the horrible conditions. The union of these organizations gave us the National Association for Mental Health, which soon became "a company union for psychiatry" and lost its vitality.

In 1909 Teddy Roosevelt called a national conference to deal with concerns about child labor. At that time there was no child welfare agency in the government: when the United States Children's Bureau was actually created in 1912, it was created within the Department of Labor. The first child labor laws were in fact declared unconstitutional by the Supreme Court because they interfered with interstate commerce. "We have a heritage we should not be too proud of," cautions Prof. Dybwad.

Much later, in 1923, the president of the International Save the Children Federation wrote the Geneva Declaration of the Rights of the Child, which the League of Nations adopted. However, economic depression and hard times caused this issue to be forgotten until, under President Hoover's administration, a Charter of the American Child was issued. It declared that every child has the right to education and medical care.

Again the cause was neglected until, after World War II, the Universal Declaration of the Rights of Man was promulgated by the United Nations. In 1959, the U.N. embellished the 1923 Geneva declaration and adopted it as the United Nations Declaration of the Rights of the Child. In 1975 the U.N. adopted a Declaration of the Rights of Persons with Mental Retardation, and in that same year Public Law 94-142 gave all children with disabilities in the United States the right to a free and appropriate public education. A resolution on human rights is only now being introduced into the United Nations for the first time.

Intertwined with these human rights developments, the nascent question in disabilities advocacy became: who was the proper spokesperson for people with disabilities? Self-advocacy was almost unheard-of when, in the 1940s, the National Foundation of the Blind was founded in distinction to the National Foundation for the Blind. By the 1970s, the precursors of many of today's major disabilities advocacy groups were steadily evolving into consumer groups with a civil rights focus. At the 1980 World Rehabilitation Conference in Canada, an historic rebellion occurred: participants with disabilities blocked entry to the conference, demanding that at least one-half of the board members henceforth must be people with disabilities. Many more such rebellions would follow.

In the early days of the MR movement, a leaflet by parents was distributed in the tens of thousands: it said "We speak for them." That is what parents did, recalls Dybwad, and they did it well, whereas professionals on the whole spoke against people with retardation. The progress made in this early advocacy movement was not just in things but in programs, and ultimately in people. Now, in Sweden, England, France, and elsewhere, the "people first movement" has changed the whole professional field. "These people," Prof. Dybwad relates with obvious glee, "will challenge professional judgement: they came to one conference with buttons which read"Mildly Normal,""Profoundly Normal,""Moderately Normal," making fun of psychological terminology!"

Professor Dybwad concluded his remarks by telling the story of Annie McDonald, Rosemary Crossley's original protege who repeatedly fought the system in Australia to achieve, through facilitated communication, her own deinstitutionalization, independence, and enrollment in a university. He spoke of Bonnie Forsyth (now a member of the AUTCOM Board) and of Ben Lehr, whose self-injurious and aggressive behavior abated as they made great strides through facilitation. And he spoke of Howard Shane, PhD, of Children's Hospital in Boston, who was featured on the FRONTLINE program "Prisoners of Silence," and is determined to halt the spread of facilitation by declaring it a "risk to individuals with disabilities." Through the efforts of Shane and others, the Massachusetts Department of Mental Retardation has issued a warning memorandum to all employees, advising staff against employing FC and recommending that they dissuade parents from pursuing it. "This is outrageous," declared Dybwad. "Here is the challenge: this is, at the moment, the most direct attack on our work and something you have to respond to individually and as a group."

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