Ed Skarnulis Interviews Rosemary and Gunnar Dybwad

"Talk about some of the international Parent Movements"

Produced in 1987 (Run time 9:30)

Ed Skarnulis: Rosemary, as an extension of what you and Gunnar are talking about - role of parents as advocates and the monitoring system – one of the things that happened a few years back was you and I were in a conversation about the role of parents, and we were discussing the international level.

And it was a surprise to me to learn that there was a group called the International League of Societies for the Mentally Handicapped who were the equivalent of our ARC US on the international scale, representing a variety of countries that had come together, the parents had come together, to have this organization.

Could you take a few minutes and give us an insight into that other world that most of us never get involved in but that the two you have been intimately involved in that is the international scene, the bureaucratic governmental organizations and lay organizations that exist at the international level that are designed to help folks with developmental disabilities.

Could you enumerate some of those for us?

Dr. Rosemary Dybwad: Take a deep breath for that.

It was in 1960 when a group, a small group of people, parents and a few professionals, got together and decided they would found a league. It was first called the European League and is now known as the International League of Societies, and now they've changed the name recently, the International League of Societies for Persons with Mental Handicap.

Well, that's a long word, so we say the League or the ILSMH. What's happened from this very small group, as it started out in 1962, the United States, the ARC here and Canada and, I think, Israel became members. And from then on, it has blossomed and grown in an amazing way so that now there are more than a hundred societies which are part of it.

Some are big and old, and others are very small and very new and having the same kind of problems, no matter what part of the world they're in. We have found amazing similarities, naturally, because parents care about what happens to their children and need to do something about it.

At the time of 1960 when they started, there was very little going on in any of the other international organizations like the United Nations, which has specialized agencies like the World Health Organization, UNESCO for education, the social affairs division. The International Labor Office had had a very good Resolution Number 99, right, that had included retarded people…

Dr. Gunnar Dybwad: 1955, very early.

Dr. Rosemary Dybwad: Yeah, '55 already. Included retarded people along with other handicapped people in their consideration of what people needed in order to be able to work. So there was a lot to be done on the international level, and, of course, the League was made up of representatives of the ARCs around the world. So it's a part of them and that means that the Minnesota members of the ARC are, in a sense, members of the International League.

Dr. Gunnar Dybwad: And on the same basis, the members of the American Association of Mental Deficiency here in Minnesota are members of the International Association for the Scientific Study of Mental Deficiency, which is the corresponding international body to the International League, so at both the national and international level we have these two types of organizations, and, by the way, with an overlap of membership.

One of the early leaders, you asked me about some names and now I think I could have mentioned as one of the early leaders from neighboring South Dakota, Dr. Henry Cobb. He was a parent, still is a parent who is now very happy that the son has finally outside of an institution living in the community.

Well, Henry Cobb was a parent, but he also was the head of the psychology department of the University of South Dakota, eventually the vice president of the university, so he was active in both organizations, you see. In AAMD as a psychologist in the South Dakota association, and he was president of the International League as a parent.

So there really is no conflict as long as you know you have two different roles, you see. When he is with the International League [Inaudible] South Dakota, he is an activist. And then he is in the American Association of Mental Deficiency, he pursues professional interests, you see.

And so we've had some... As a matter of fact, internationally, we are accredited together at the World Health Organization in a joint commission. In other words, at the International League, the parent organization, and the International Association for Scientific study, we are jointly working together with the World Health Organization.

Dr. Rosemary Dybwad: I think this kind of cooperation has gotten more and more interesting. The new organization for severely handicapped, TASH, very early on had a parent component, had parents on the board. And in recent years, they have become interested in what's going on in other countries. They have an international committee and they have been publishing reports and articles about what was going... what is going on in other countries. So there... It's a natural kind of cooperation. Fortunately, it generally works pretty well.

Dr. Gunnar Dybwad: There is a very interesting anecdote. When President Kennedy met in 1981 (sic) for the first time with the Panel on Mental Retardation...'61 - what's a few decades? - he turned to the chairman, a friend, Leonard Mayo, and said, "Mr. Mayo, what do we have to learn from other countries?" And Mr. Mayo was quite surprised to have this direct question from the president right before the panel even started, and he said, "Well, I don't know, but you shall find out." And subsequently, the panel sent some task forces to Holland, to Denmark and Sweden, to England, to Russia.

The amazing thing was – and, of course, that's how you become a president – when a year later or 11 months later, the panel met with the president to make their report, he turned to Mr. Mayo, as if it had been yesterday and said, "Mr. Mayo, what did we learn from other countries?"

Well, fortunately, there was much to be reported, but it's interesting that the president's panel did recognize that there was a lot of things which we had to learn from other countries and at the same time, there are lots of people from other countries who come here.

There is the Campaign for the Mentally Handicapped in England who regularly sends their people over to study specific developments. They don't just come as visitors, but they study specific developments in our country and then review them for significant.

And, of course, recently somebody, I know I read in a Danish journal just a few days ago, somebody had come from Denmark to look here and so on. And I think there's a real opportunity in an international exchange of knowledge. It isn't that you copy; it's you get ideas, maybe even ideas of how not to do things, you see.

You can learn from failure sometimes more easily than from the good intentions. So international exchange is a very valuable part of the work in our field.

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