Chapter 2: Early work

03:06:29:27 - 03:08:18:24 Lisa: Early in your career here in the States, you provided services to families and children in a hospital setting, and I wanted to ask why was that you were drawn to working with children and families - was it, as you had said earlier, because of your own experience as a child with a disability?

Graham: I was trying to protect the kids. I mean, I spend a lot of time given the job that I do, thinking about the extent to which different disability communities have different views, and they have different views about congregate settings. They have different views about the role of others. They have different views about cure, different views about prevention. And, one of the things they have different views about is the role of fathers, and the role of parents. And, you know, in some communities, like in the intellectual disability community, parents are part of the solution. Without parents there would be no ARC. Without parents, I think there would be no real advocacy for kids in schools. In other communities, like the mental health community, and to some extent the physical disability community, parents are a little bit more of the problem than the solution. And, so my view of working with parents and children with my life experience of growing up as a kid with a diagnoses was I wanted to help and protect the kids by making sure the parents didn't make their situations any worse.

03:08:18:25 - 03:08:56:05 Lisa: You understand the protectiveness of families at the same time? Graham: Not at first. Not when I was a young man, you know, starting out in my career, I was going to change the world and protect the kids. I understand much more now what families can offer, and the ways in which things that families do that may not be helpful to kids with mental illness are done with the best of intentions and the greatest of love. I understand that stuff now, but that took me 20 years.

03:08:57:05 - 03:11:04:25 Lisa: I believe in 1987, you took over a Head-Start program in Harrisburg that had been struggling. It was federally funded, but was still failing. I wonder if you could tell me a bit about why it was failing, and what improvements you hoped to make, or did make?

Graham: There were a number of features, and I think everything I list as failing would be what we tried to improve. One, it congregated something like 245 kids in one huge basement of a building with no windows, darkness, mice, the works. So, they did that, and we turned it into 14 different centers instead of one center in local communities and local churches and community buildings. It didn't involve parents and I had grown up enough at that point to realize that the parents were a really important part of Head-Start. Kids are in Head-Start a few hours a day, but with their parents for the rest of the 24, so that was pretty important stuff. And, I don't think it did anything more than have a classroom experience and we wanted to integrate the classroom experience with the social work experience for the families, and with the nutritional experience, and to try to make it a much more integrated program, but the primary things were to have the kids go to head-start in their local community, and a reasonably attractive environment, and to involve the parents. And, we actually reached the point one year that our parent involvement -- the number of parents, or the percentage of parents, the who volunteered in the Head-Start classroom was up to 100 percent. We got everyone in, so those were the main changes that we made, but it was quite a struggle.

03:11:05:24 - 03:12:17:26 Lisa: When we were preparing for this interview, you had mentioned that you liked the work, but maybe not the politics of that job so much. I wonder if that's something you could comment on?

Graham: I like thinking about the situation of people with disabilities and what can be done to improve them and some experiments and demonstration projects about things that could be better. I'm personally not very well equipped at dealing with those situations which require the exercise of power. I don't like exercising power, and I certainly don't like power being exercised on me. So that's, I think just one of those struggles that I have as an individual, and that's the way it is. I don't know that it necessary changes anything.

03:12:18:10 - 03:13:43:02 Lisa: Were you able to measure the progress of, or the success of the Head-Start program? I know that this idea of measuring progress would be important to you in your career. Were you able to do it at that time?

Graham: You know, HeadStart was this national established program and it had it's outcome indicators. But, when you look at the outcome indicators they were using at that time, it was, "Were the right number of kids in the right number of classrooms for the right number of hours with the right number of teachers with the right number of qualifications?" It was absolutely a set of indicators of engaging in the process of doing Head Start. No one wanted to know if the kids had learned anything, if they were readier for school, if they were healthier, if they were eating better meals, and, so when I moved on from head-start to work with people in intellectual disabilities programs, it become very important to me to start asking about quality of life issues, and really meaningful outcomes, rather than just measuring whether you did a compliant process.

03:13:50:15 - 03:17:28:25 Lisa: So you did describe yourself in our earlier conversation as being a Wolf Wolfensberger junkie. I know that Wolfensberger was expanding on the 60's concept on normalization, and sort of expanded role on that with a concept known as Social Role Valorization -- SRV? Is that right?

Graham: You've done your homework.

Lisa: Just a little bit. Probably not nearly enough, but because I probably haven't done nearly enough homework, I wondering if you can tell us a little about that concept, and how it influenced your own thinking about the way people with disabilities interface with their communities?

Graham: Well, let me stress that I said I was a Wolfensberger junkie. I no longer remain a Wolfensberger junkie and really have developed some set of disagreements about solutions compared to what Wolfensberger had thought. I think the Wolfensberger stuff around defining how people are de-valued and harmed and wounded by society, and by the attitudes that people have towards disabilities is very accurate and very helpful, and I think the Social Rule of Valorization part, which would go beyond just treating people as normal as opposed to highly valued. I mean, the best distinction I can put is if you think about the debate about executing people with mental retardation, as it was known at the time, it would be normalizing to be executed along with everyone else, but it's not a very highly valued role, to be dead, so SRV might suggest some other approach to people with disabilities. My problem with this stuff as I sort of got involved with it over the years, and the more I got involved with people from different disability groups as well, was that the analysis is great, but the solution of trying to -- what seemed to me, trying to make people with disabilities more like people without disabilities and was an inadequate solution. Particularly given what I said earlier, around my view that the target for change is the dominant culture, the dominant community and not the person with the disability, so some of this measures that are taken under SRV I think so great things, they certainly stop people being wounded, they would make people more highly valued, less looked down upon, but the bottom line is, your aligning people to the values of a culture, that on the large scale, is pretty sick in it's view to -- about disabilities. And so, I think a model that's acceptable in the end has to go beyond how you have highly valued roles to looking at how the many culture itself views disability as a vital and normal part of the human condition, as opposed to something that's got to be taken care of, or fixed.

03:17:30:12 - 03:19:34:14 Lisa: As a person with a disability, did you consider yourself to be devalued? Did these concept kind of change the way you perceived your own role in society?

Graham: I once had this conversation with an employer to whom I came out, and I said, "I've been locked up at night, and I've been pitied, and I've been viewed as weird and fearsome." And -- and the worst of those is being pitied. I don't know that I have much more to say, I mean, I've experienced them. I think I've experienced disability discrimination in the workplace, but I wouldn't necessary know that. There are people who -- I think one of the worst situations I ever encountered is when I had been taken from my workplace, underneath my desk, to the 5th floor of Holy Spirit Hospital, and been off work for a couple of months, and when I came back, people were so nice to me, and so protective, and so -- maybe almost pitying of me, but not quite, I wouldn't call it that, that I wasn't able to really make any major decisions, or take any risks, or be put in the position of huge responsibility. Out of the best of intentions and the desire to protect me, but it really felt pretty unattainable for me.