Ed Skarnulis Interviews Rosemary and Gunnar Dybwad

"What do you see for the future of the ARC?"

Produced in 1987 (Run time 5:15)

Ed Skarnulis: Would you say then that you think the future of the ARC is an investing in more in self-advocates helping them to independently to develop and...

Dr. Gunnar Dybwad: Developing services, yeah.

Ed Skarnulis: ...recruiting young parents.

Dr. Gunnar Dybwad: Yeah. That's right. Developing services. Obviously, for young parents now, we have a greater appreciation of very early development. And there is one other point that will challenge the associations. You see, in the early days, you worked for specific service for a specific group of people, namely, children with mental retardation.

Today, we are much more eager to bring children from the very early age into the mainstream of activities, you see. So it is now much more difficult for an association for retarded citizens to fight for what the professionals call generic services, services that serve all children.

And yet the more we go into the younger years, the more we need not categorical services but broad general services. But [Inaudible] health is a problem for all of them.

And as you know in our country we have a miserable record in taking care of the health of our children, and that includes children with mental retardation. You know we are steadily falling.

It's disgraceful. The mortality and morbidity of infants in our country compared with not just Scandinavian countries but other countries in the world. So but... so therefore, we need to fight for broader general services, and it is harder. Then, you see, you can't have quote a poster child unquote that is specifically a child with mental retardation.

I remember the picture we took of two children with PKU, phenylketonuria, in President Kennedy's office. I was there at the time because I was the executive director of the national association.

Well, that was very specific. We showed one child who was treated with the now famous diet and was operating near normally and another very disturbed child, and there they were both visible to all the world in the president's office.

Well, it is much more difficult to make visible this new problem we are trying to tackle, the early attention to the early needs of all children, you see. So it is harder without poster child and so on.

Ed Skarnulis: [Inaudible] Go ahead.

Dr. Rosemary Dybwad: If I can add this, I think there is still plenty for the parents' organizations to do in the field of advocacy alone. We know pretty well now after all these years of experience how you talk to a legislature and how you go about this. Some, well, not perfect yet, but I think Minnesota has a pretty good record there and it shows. But we still have to have the people on, on… in the community level in the towns and villages who are really ready to accept the fact that people with a disability are part of us and are going to be living with us, and that's going to take a lot of work still.

Dr. Gunnar Dybwad: And there's one other point, which, of course, I should have made. One role for the parents now is not to do things themselves but be the monitors, be the people who look at services, and look not as technicians.

We have enough people in the health department who can measure whether the temperature is high enough in the dishwater and so on, but rather people who look at the human side, do the services we provide, are they really proper services for human beings? Do we have the humanity, the compassion and this kind of thing in these services?

And there are some spots in this country quite likely some, I don't know, in Minnesota, where this is already being done quite successfully. Parents in their role as parents are watching and judging the adequacy of public services, not in terms of regulations, not at all, but in terms of the human content and meaning of these services.

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