Chapter 7: Refelctions on Career, Intellectual Disability Rights Movement

11:18:56:18 - 11:20:18:13

Lisa: Now, looking back many institutions closed, and segregated centers closed in Pennsylvania, but Pennsylvania still has five institutions, Polk being one of them. Hum, why is Polk still open, do you think?

Chuck: Well, I hate to say this, but thank God it is, because the county cannot care for everybody on waiting list and is recommitting people to Polk. I mean, not recommitting, but bring new people into Polk. That's tremendously regrettable, it's almost like if you live long enough your life will come around and kick you in the tail because that's where I came in.

Ebensburg is still open; I go to Penn State from time to time and pass Ebensburg. Why is it still open? Well, I think probably because there is a community waiting list which is horrendous and people there are going... Certainly if I were still running county HM/HR I would say I'm not bringing anybody out of Polk until you take care of somebody on my waiting list.

That's not what's happening, but that's what should happen.

11:20:19:08 - 11:21:05:14

Lisa: Can you envision a time where we have no institutions in our state?

Chuck: Yeah, I can envision that, I saw that happen on the mental health side. Woodville, Mayville, Dixmont all closed and today the jail... I have friends that still work there; it's the biggest institution in the county.

So, can I see all the institutions closing and no place for the mentally retarded? Yeah; that will take us back to 1875 when they started opening institutions, it would horrible, but yeah, I can envision it. I never envisioned having no state mental hospitals, so why can't I envision there being no state centers for the retarded?

11:21:08:20 - 11:22:26:15

Lisa: Earlier in our conversation you talked about this fight to improve the lives of people with disabilities as a Movement.

Chuck: Yes.

Lisa: And, I'm wondering if you see this as a parallel to the Civil Rights Movement or any other rights consciousness movements?

Chuck: I'm sure, absolutely; I think there's a lot of similarities for example, I think ... Well, I heard this story on TV the other night about an Afro-American woman talking about mentioning to her daughter the troubles in Birmingham, and the daughter saying, "Well, I wouldn't have gotten up and given up my seat either." Having absolutely no concept of what...

Well, its same thing on the MR side. I don't see people recognizing what genius of Pat Clapp and Barbara Systic went through to get good services in the community, and which have been steadily eroded for at least the last 10 maybe 15 years.

11:22:27:10 - 11:24:07:03

Lisa: So, where do you think the Disability Rights Movement is today?

Chuck: I'm really not qualified to talk about that because as I said I haven't been involved, but as I said also I think, did work for foundations last spring and right, where is the Movement? And I interviewed a lot of people, and I think the Movement is in real of trouble. If the act was written in the mid '60s than the Movement is in 1959 in terms of having services come on line to address the need.

And I also have to say this...I'm not sure that the system, if I say "envision"... we never quite knew where the system was going to go, so that's excessive. But anyway, the system that evolved... I'm not sure that the system that evolved is sustainable in the current political and financial environment.

We use to say if you could get the financial imperative and moral imperative to cross there's nothing you can't get the legislatures to do. And the reality is the more imperative to take care of people is not there anymore, at least not in Harrisburg, or Washington.

11:24:09:10 - 11:25:33:06

Lisa: So, who or what do you think will shift the movement forward, will keep it going forward?

Chuck: I think the only thing that will keep it going forward... I think that families at some point are going to be where families were in 1955 or so, and if they get angry enough, which is what they need to do is get angry, they'll start reacting. And when that happens I hope they have good staff like Wayne Hanson, Bob Nelkin to support that. If they don't get angry...

I think there's another factor too, I think the other factor is maybe its new social media, which could be an asset, but I also think people tend to be isolated from each other and those days you had parents of mentally retarded coming together in clicks and taking strength from each other. I don't know that still happens in any way or if it happens does it happen among people that don't have their son or daughter in service?

11:25:36:20 - 11:26:45:25

Lisa: When you reflect on your career what is it that gives you the most sense of accomplishment?

Chuck: Boy, that's a good one.

Ah... Probably... Probably what we succeeded in doing in terms of not only deinstitutionalization, bring people out of the institutions, but what we succeeded in doing in terms of getting money into the system for Polk school programs, for the vocational programs; I was very pleased to be a part of the Rights to Education thing.

I have two of my offspring now that are in the Right for Education, they are... They curse me sometimes for the paperwork that is associated with it, but it wouldn't be there, there would not be the education for the 5, 6, 7, 8 year olds and the 16 year olds would still be forced out.

11:27:19:00 - 11:28:07:06

Lisa: Who or what, served as inspiration for you in your work.

Chuck: Inspiration?

Lisa: Uh-huh.

Chuck: I think more than anything else was the Civil Rights Movement; I thought of the mentally retarded as a marginalized minority, they're only 3% of the population.

When I was teaching at the Special Ed the conventional was at 2% educable, the 1% was trainable, but whether they were educable or trainable they were marginalized.

So, probably the Civil Rights DNI War Movements (inaudible).

If those hadn't come along I'm not sure the... I know if those hadn't come along there would have been no Mental Health Mental Retardation Act.