Ed Skarnulis: There have been some dramatic changes over the years in the parent movement. We've alluded to some of them, the rise of self-advocacy movement. But I think it's fair to say and without judging that the parent movement seems to have been grinding to a slower pace over the last decade.

At least in my experience, I think that… I believe that's true. There are indications that their membership has declined. There has been a major schism between the institution parents who have formed new organizations and the rest of the parents who supported the Community and Family Living Amendments. The parent association has been struggling to finance many of their activities.

Dr. Gunnar Dybwad: This is all quite correct, yah.

Ed Skarnulis: Could you please relate to us what you think the future of the ARC is and where you think we ought to be going and what changes, mid-course corrections we need to make to put the passion back into that movement?

Dr. Gunnar Dybwad: Well, you see, you can't bring back the past. What was so exciting in those early years was that the parents had to create the services, create the facilities, literally paint old buildings and basements to be used for schools, and they carpentered the benches and so on, and there was a tremendous self-cooperative, self-help movement.

But, of course, they soon found sympathetic professional people, and these early self-help activities became professionalized, and without any bad intent, professionals took over more and more. Now the activities grew and the parents instead of being the workers became the employers.

And in 1958, a man by the name of John Fetinger, who was a paper salesmen for the Continental Can Company, a very independent thinker, warned the movement that their role was to obtain services, not to provide them.

Ed Skarnulis: But in our state, in Minnesota…

Dr. Gunnar Dybwad: Yah.

Ed Skarnulis: …for example, we apparently heeded that. And other states, like Nebraska, we provide no direct services through our ARCs.

Dr. Gunnar Dybwad: Yeah, but that was…

Ed Skarnulis: But we still seem to be struggling.

Dr. Gunnar Dybwad: Yeah. That comes as the second thing. The first point was providing of services. You're asking me about the total movement around the country you see.

The second one has been that we dealt with people who were very intent on building an organization to serve their children. And by the way, their children, was not in any personal sense but the group of children, you see, they all worried about other children too. But it was a generational point.

And so as they continued to build up the organization, moving more into adult services, the field of employment, you know, the sheltered employment, which so captivated the parents in these early years.

They neglected to worry about the young parents, and the young parents, apparently, had not felt attracted to the organizations. So you have a perfectly understandable generational gap, and what is missing in many of the organizations is that the young parents not coming in.

Now, of course, you have to understand here that what drove the early parents was the complete rejection by the educators of their children. And this is being changed now, slowly but increasingly.

So that this original motivation of the parents to fight for their child's right to education doesn't exist in this stark reality anymore. And so today, there is an educational system and the parents are working within that educational system, so we have, for instance, an organization like TASH, the Association for Severely Handicapped Children, being much more active in this situation at the moment. But I think it is natural that within a phenomenon, a broader phenomenon as mental retardation, different organizations fill different needs at the different times.

How the National Association for Retarded Citizens, as they are called now, will relate to the self-advocacy movement as it is growing remains to be seen. In many of the more progressive state and local associations, they have been very hospitable to these groups as they develop initially.

As they are growing, I can't predict where they might be going. Will they be parallel organizations? Will there be any antagonism? Again, I don't use the word negatively, but rather a challenge between the two.

But, certainly, we have a new situation where we no longer quote speak for them exclusively, but where we have to listen to this new movement which is growing.