Chapter 9: Pennhurst Memorial Preservation Alliance; Reflections on Career

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INTERVIEWER: You said you worked the rest of your career in many different places across the country and across the globe. But you're back in Pennsylvania now, and you're a board member of the Pennhurst Memorial Preservation Alliance. What's it like to revisit so much of the history you were part of?

ED GOLDMAN: Well, it has been. I had gotten to meet Dr. Conroy well after the fact when I came back from New Zealand. I was at a meeting somewhere, and people were going around the room introducing themselves. And this big guy stands up. And he says, I'm Dr. Jim Conroy with the institute. I had to go up afterwards because I had spent time in New Zealand helping close an institution. I had moved there in '86, and we stayed for seven years. And when I learned of the study, I used that in New Zealand as I did early days here is to teach both the government and families of what opportunities there were out there to change things. Because New Zealand, at the time, was like it was here. They had several institutions. They had no developed community services at all. And now I had a study that proved beyond a shadow of a doubt that things would be better in the community in every way, shape, or form. So when I finally got to meet Jim Conroy, it was like one of my heroes, if you will. That study had a major influence on me and how I would approach moving forward in whatever jobs I was in, always trying to do something similar about the development of community alternatives. And so when I got to meet Dr. Conroy a couple of years ago, he mentioned about the Pennhurst Memorial and Preservation Alliance, and would I come to a board meeting? And my first reaction was, this makes no sense to me. Who would want to memorialize Pennhurst? I want to be the guy on the bulldozer. And I sat in a board meeting, looked around the room, and all I saw was people like me. And I learned that what they were, PMPA was about, was to memorialize what happened there, to never forget, and to never go back, and history, what not to repeat. So their mission was educative, to teach what happened there. Many people in today's current generation and maybe even the one earlier knew nothing about Pennhurst, knew nothing about what happened there, how it started, how it got to be theway it was, and how it led the path to major change internationally, let alone just in Pennsylvania, so its historic role in liberating people, in advocating for the civil rights of people. It led to organizations like People First where, for the first time, us were listening to the victims of all of this, what they wanted in their life. And they began to mobilize. So this is what Pennsylvania-- I'm sorry-- the Pennhurst Memorial and Preservation Alliance was about. And I felt I was in the room with friends-- so joined the board, which I am still a board member of. And from that, we designed the 7 foot panels, 13 of them, to teach how it started and when it began through the eugenics movements, which was trying to end people with defective genes through forced sterilizations, through the dehumanization that took place in institutions, and how it came out the other side, and how, finally, here in Pennsylvania, parents had had enough. And the 1968 exposé on channel 10, Suffer the Little Children, really was what I call the Howard Beale moment in the movie Network where he screams out the window, I'm sick and tired. I'm not going to take it anymore.

00:04:45.73 - 00:06:52.68

INTERVIEWER: You're being polite.

ED GOLDMAN: Yes. I am. And so when the parent, the state ARC got together and said, what can we do? This can't continue. They met with a young attorney at the Public Interest Law Center in Philadelphia, Tom Gilhool. Tom had a family member with an intellectual disability. And they strategized how to attack what was going on at Pennhurst. And the strategy was to take on education first. And the reason was the Pennsylvania Constitution guaranteed a public education from four years, seven months until age 21, legal school age, and then there was mandatory school age. Mandatory school age was 8 to 16. And what that was meant was you could not keep your child out of school beyond age eight, and you could leave at age 16. The schools interpreted that exactly the opposite, that they believed they didn't have to take a child in if they caused some educational disruption until eight, and you could kick them out at 16. So they made the decision, the ARC parents with Attorney Gilhool, to attack education first. But it really was the Pennhurst exposé that was their "mad as hell, and I'm not going to take it anymore" moment. That then led to the next lawsuit, after the consent decree on education was agreed upon, to take on the living conditions of Pennhurst, that people have a right to effective treatment and freedom from harm. And there were two other federal lawsuits that led to the closure of Pennhurst. So it's a wonderful story, and it's really the parents who pushed the professionals to do this.

00:06:52.68 - 00:10:44.89

INTERVIEWER: So looking back on your career, moment you're proudest of.

ED GOLDMAN: Probably the thing that makes me most proud is having been part of the story from the early days on and helping create the alternatives. One of the nicest things that ever happened was in New Zealand when I now had the proof, the study, that community services worked. And when I first started, I was hired by the health department, which ran the institutions in New Zealand, to close the one in the community where I was living in the South Island in Dunedin. And I used this study with everybody and did normalization training all over New Zealand from '86 to '93. And I was told that the person who was head of the hospital parent's association was someone that no one liked, who was contentious and argumentative, and that if she was in a meeting, they would get up and walk out. It was that bad. So I met with her, and she was angry. Her son had been in and out of institutions. She never wanted an institution for him in the first place. She actually founded the equivalent of a local parent association and started a workshop. And then the workshop wouldn't take her son because he had significant behavioral issues. And they were bereft as a family and used institutions as a way to survive. So she was angry that the parent movement didn't serve her. She was-- at least found a haven in the local institution for her son. And she was tough, and we-- I met with her often. And one of the nice things that, in my professional career, was we became friends. She was actually an accomplished artist. I still have some of her work hanging in my home now. And the parent association was still, like many here, afraid. Would it be OK? This is-- the study's a piece of paper. Would it be OK? And I challenged the parent's association to form a trust, or it would be like a nonprofit here, and run one of the group homes. And if there was anything not of their liking, they're the board. Change it. And they did. And I still remember, the name was the Hawksbury Community Trust. They opened up a group home. And one of my finer moments-- they asked me to be on the board. So that was a sweet, ironic moment for me. Heather Maxwell was her name. And eventually, when the home opened, Heather took her son home because now there were some supports emerging in the community. He was then in his mid-30s. And we used to have family dinners together. And I remember her son very well. And you know what? He was what, in the early days, we would call a "piece of cake," easy to provide services for. He was just a good guy. But if you leave him alone with nothing, and it would be true for any of us, you go nuts. So life worked for the family, and that was a proud moment for me.

00:10:44.89 - 00:11:48.34

INTERVIEWER: So you've had more than 50 years in this field. Looking back, do you think you're happy that Edith Taylor recruited you?

ED GOLDMAN: Oh, my goodness. You know, Edith was tough. Edith was-- a lot of people didn't like her in the room either. But for me, she's one of the best things ever happened to me. She became a mentor to me. And because I had previous training in business and I was an accounting major here at Temple for three years, I thought it was a total waste of time afterwards. I realized I was now in an environment where most of the people that ran social agencies had no business or management training and couldn't read a balance sheet. And so she gave me more responsibility as a young guy than I probably deserved, and it helped me grow a lot. So she was just a wonderful, wonderful boss. I will always be indebted to Edith. She was a parent also.