Chapter 5: Normalization

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INTERVIEWER: And this is the second part of our interview with Ed Goldman at Temple University on December 18, 2017.

ED GOLDMAN: It is.

INTERVIEWER: And do I have your permission, Ed, to continue our interview?

ED GOLDMAN: You do.

00:00:10.38 - 00:08:28.68

INTERVIEWER: Thank you. Let me just sort of remind you where we left off last time, and we'll work from there. There was really great, great stuff that you shared. We left off really talking about the beginning of the new community living system. You had talked a little bit about folks that you brought on board, including Mel Knowlton, and a little bit about that process. So I think, to begin today, what I'd like to do is pick up there, but also step back a tiny bit. You talked a lot about normalization and that philosophy guiding your approach to this new community-based system. And I think that, depending on who would hear your interview, some folks may not be as familiar with the concept of normalization. I know it's complex, and it will be hard to keep that brief. But I wonder if you could briefly talk a little bit about what the philosophy of normalization is and how that affected the development of the community-based system.

ED GOLDMAN: Normalization to me helped me for the first time understand how things could get the way they were in the institutions. And it did that by explaining from the sociological perspective. What Wolfensberger did was the concept of deviancy and how deviancy occurs in any culture by people who have things about them that are seen as negatively valued and bring negative attention to the individual or the group. I never understood that before. And what normalization also did, it took from the emerging concepts in Scandinavia about creating the typical rhythms of the day that, quote, normal people use in their everyday life. Also, what Wolfensberger did was to take the concept of deviancy, and then helped not only by understanding how it occurs, but what you can do to reverse the perceptions in the general public. And that was a game-changer for me. Because when I came out of Pennhurst on my tour, I was shocked and puzzled. How could this be? How could this have gotten to where this is? And the state was doing it. And this helped explain to me how, over the years, different perceptions of people with mental retardation, as it was called then-- intellectual disabilities now-- how they were perceived as degenerates and a moral pox on society. Initially, the institutions were created to protect these so-called vulnerable people by taking them away from the harsh realities of everyday life and putting them in these beautiful sylvan settings. Almost all of them were in places that you and I could probably take a vacation. They're beautiful. They're in the middle of nowhere. I remember Seaside in Connecticut faces Long Island Sound. Oh, wow. Isn't this nice? Well, not so much. So what we then tried to do early on, understanding how to reverse things, is to help create for the people who were then in institutions, as they were coming out, the normal rhythms of everyday life-- community living, living in typical housing, being able to go to work, being able to go to a movie, but as much as anything, to give people choices in their life. When you live in an institution, you're little more than one in a long line even to go to eat or to go to the bathroom. The sense of privacy in institutions is unknown. We tried to build that in to a requirement where there were never more than two people in the early days having to share a bedroom. Well, that was incredibly progressive. When you look at that now, you said, wait, two people in a bedroom? Two strangers who don't know each other and didn't have a choice? But that was a major step forward to 100 people in a room. So what we redid were the rules and regulations about creating this so that we made sure that the homes would be in typical neighborhoods. Some of the concepts about negative value were, where are places located? For example, pretty much in every community, everyone knows the, quote, bad side of town, the wrong side of the tracks. So we knew that, while housing might be cheaper in those locations, it would bring the negative value imagery in that community toward the people who lived in those homes. So we made sure, in every one of the 67 counties in Pennsylvania, that there were some rules in place where you could find a group home and make sure that at least that stigma was not going to be attached to the people who were living there. And I remember one really large battle early on was changing the regulations about housing. And the Department of Licenses and Inspections set the standards for building codes. So we had to go over there and explain what we wanted to do. And they wanted these red Exit signs over the front door and the back door or as many outside doors as there were. We said, no. Who has that in their home? Well, and I understood later, their concern was-- since this was new-- if there were ever a fire and the fire code requirements. So it was CYA-- cover your rear end. And I was talking to the Associated Press reporter in Harrisburg about this. And I said, these people are Neanderthal. The next day in the newspaper, on the front page, Goldman Calls Illinois Neanderthal. Well, I heard from the governor's office-- not something that you should do. And all of a sudden, though, they changed the rules. And I thought about it. And I'm just this young, naive guy. I don't know what the parameters are. And we're just trying to do good, whatever that meant to us. And so I learned the power of the media, different then than it is now. And I learned to be a little more judicious, but to use it. So for example, civil service code required that institutional superintendents had to be medical doctors. And I went over to them. I said, we need to change this, because medical doctors are not necessarily good managers. Many of them have no concept of what we're trying to create by helping people leave the institutions. And because we had three vacancies at the time, if I had to stick with hiring medical doctors, they would probably fail on the job. I said, what I wanted were people trained in education, social work, psychology, management who have grown up in this field and want to help move people from institutions into community life.

00:08:28.68 - 00:09:39.01

INTERVIEWER: And then just to clarify, the positions you're talking about were superintendents of institutions? There were some vacancies.

ED GOLDMAN: Yeah. When I arrived in Harrisburg, there were three vacancies. Three superintendents had retired. And I did not want to hire more medical doctors. And so I had this long running battle with civil service, because they refused to change the requirements of the job. So I basically just told them, well, then I'm never filling these jobs. I will appoint acting superintendents in these jobs. And they finally relented. So there was an entrenched bureaucracy that worked fine for the old system. It didn't work for the system we were trying to create. Another one-- each of the counties had mental health and mental retardation administrators back from the MR Act of 1966. In the more rural counties, some of the times, there were two, three, or four counties that would band together for one administrative unit.