Visionary Voices
Interview with Graham Mulholland
December 14, 2011
Chapter 1: Personal History and Experience with Disability
2:55:41:09 – 02:57:03:25
Lisa: Okay so we have started recording and it's our pleasure to be here today with Graham
Mulholland, at Temple University on December 14th 2011. And, also present is our
videographer Lindsay Martin. And Graham, do we have your permission to begin the
interview?
Graham: Yes.
Lisa: Thank you. So Graham, I wanted to just start simply by asking where you’re originally
from and why it was you come to the United States?
Graham: I'm originally from Scotland, and I came to the United States somewhere in between
Degrees to work in what would now be this reprehensible camp for kids with what would now
be called special needs, which was isolated and segregated. And, I came to teach fishing and
boating, and somehow met the camp tutor, and came back a year later to get married to the
said camp tutor. And, then we lived in Oxford, and then we lived in London, and then
eventually when our oldest was nine months old, we came to the U.S. and tried to find a job
and house and cars and all that good stuff.
02:57:05:00 – 02:58:21:16
Lisa: You mentioned that you had come to a camp working with kids with special needs. I'm
wondering, or I'm sorry, pardon me, you've worked with people with disabilities in
Pennsylvania for probably most of your career?
Graham: Right.
Lisa: And so, I'm wondering what it was that initially drew you to this type of work?
Graham: This is the question that gets me into trouble when I go to job interviews, and they
say to you something like, "What is the basis of your interest in disability?" It's a very personal
basis. I am manic depressive, which I prefer to the more politically correct Bipolar. And, I was
first hospitalized by a psychiatrist when I was 12. I've been in and out ever since I thoroughly
therapy—ized and thoroughly medicalized and drugged. And, most of the time so you
wouldn't notice, but my origin of my interest in disability was to work with kids with
mental health problems and try to provide for them something I got for myself, so it's a very
personal passion.
02:58:24:09 – 03:01:30:15
Lisa: Okay. Graham, you had mentioned that you've had a struggle, maybe a lifelong struggle
against the concept of cure, and I wonder if that's something you could comment on?
Graham: People really want to cure my mental illness. My parents, perhaps to an extent my
wife, certainly most of the professionals that I meet. They want it to go away. And, while I
think that's important —— I mean, you really don't want me to be here without my
medication, you know, it is important to have that medical model intervention —— there are
some things in life that are more important than the medical intervention. It's how you get on
with people, how you relate to people, how people talk to you. It's existing in social situations
and professional situations, which on some level for me became —— here I am, this is what
I'm like. To what extent can you get used to it? And, if you're my employer and you can't deal
with the fact that I do my best work at four o'clock in the morning, or that I'm underneath the
desk at three o'clock in the afternoon, that's kind of tough, but can you please come to some
arrangement in living with me, and just appreciating that I am who I am. And by extension,
that's something that I found has resonated with other disability groups to the extent that
when I encounter movements to make people with disabilities more acceptable to the public
by making them appear more normal by doing surgery for someone who has Down
Syndrome, stuff like that. It really seems to me from my experience, that we need to start
accepting that some people look different, some people behave different, and our task in the
disability advocacy community is to help all those so—called "normal people" to come to
terms, and so the target of change for me throughout my career and increasingly recently
has been to say, "How do you change the dominant culture to accept a diversity?" That is,
disability diversity, just like it's finally become acceptable to accept diversity on racial, ethnic,
sexual, or religious grounds.
03:01:31:00 – 03:03:25:10
Lisa: Okay. In the U.S., it seems that we hold a view that, as you were just saying, people with
disabilities should conform to the environment rather than asking ourselves how
environments can be better modified to support and serve people with disabilities. And,
when we talked before, you kind of illustrated this point from your childhood. You
talked about a young schoolgirl, a deaf schoolgirl and I wonder if you remember that story,
and if you could recall it for us?
Graham: I was thinking back to one of my cousin's classmates when I was young, who was
deaf. And, the approach that the Scottish Inclusion System took was to include her, not by
having a translator there, but by teaching everyone there British Sign Language who
was in the kid —— who was in the class, so that she grew up bilingual, and all the other kids
grew up bilingual, and that was the approach to inclusion. It was not a special approach, but it
was a very natural way of trying to achieve inclusion, because for the Deaf community, there is
that huge struggle of wanting in some ways to be separated from other disability communities
or from the community in order to focus on your own language, or your own culture, and at
the same time having the struggle of how do you get the accommodation of translation and
interpretation taken care of? And, it struck me that the Scottish system was at least worthy of
some attention.
03:03:28:15 – 03:06:27:24
Lisa: Okay. So, coming from that background, when you came to the U.S. I'm sure you
experienced different attitudes, and I'm wondering what that was like and why it is that you
think the attitudes in the U.S. towards supporting people in the environment are
so different. It's a big question.
Graham: The big question is: Is there something about America that makes it harder to
accommodate diversity? To be interested in diversity? And, I used to get upset about this. I
used to think that, you know, Americans didn't really like diversity in any shape or form. I
think it really hit me as a white man coming to America, and hearing what white people
would tell me when there was no one else around. That, you know, on some level, Americans
weren't really comfortable dealing with racial diversity, never mind disability diversity. And, I
kind of kicked against that for a long time, and until I realized there’s something about this
culture that likes homogenous situations or realities and that people are really pretty
comfortable if everyone was just like them. Why can't a woman be more like a man
sort of thing? And I think that's a realty you have to deal with in living and working in America.
It's very easy for me to say that you should appreciate, as an employer, the contributions
made by someone whose not very good at their job, but who provides the social glue that
keeps the workplace together. It's easy for me to say that as disability advocate, and in an
economic environment that is so competitive, that's a harder thing to say, and I think it may
be that there's only 20 percent of the people that are really interested in great diversity, and
appreciate it for what it brings to the workplace, and the family and to the school, and to
other environments. So, I become a little despairing as I get older that things may not
change well, but that becomes part of the struggle.
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.
Chapter 3: Graham’s work on the PA DD Council
03:19:43:00 – 03:23:59:14
Lisa: I'm going to move a little forward and talk about when you started at the DD
council, if that's okay?
Graham: Uh—huh.
Lisa: And in 1997 you became executive director, and is it 13 years now that you're still
serving?
Graham: Almost 15.
Lisa: Almost 15, wow.
Graham: I think so.
Lisa: For folks who might be viewing our conversation who aren't familiar with the DD council I
wondered if you could tell me a little bit about what the council does and why it was that you
wanted to lead it's efforts?
Graham: The DD council funds some experiments in doing things in new ways, and with new
approaches, and with new mind—sets. Some of it's research, some of it's demonstrations of
different approaches, some of it's advocacy for the statewide adoption of some of
the things we've discovered. It moves very slowly, you know, we do a 5 year plan and, we
could be working on things where the idea started 10 years before that. We have 10, 15 years
sort of arc of development of what we do. The planning process is slow, it's
sort of —— there was a poster on my wall when I arrived that said, "Think globally, act
locally." And I would add that's it's actually, "Think globally, act locally, and move glacially."
But, we have a chance to do things thoughtfully over a period of time that no one else has the
opportunity to do. So, if we can spend 15 years working on transportation for rural
Pennsylvanians, and we did take over 15 years working on that. Our work and schools around
inclusion has grown and developed and changed, but there's a consistent thread that's been
there for maybe 15, 20 years that we do things. That's what our DD council
does. Whenever I hear from the feds what a DD council does, I understand that we're
supposed to be lobbying for the adoption of laws to make clear that the
changes that are called for —— we tend not to do a lot of lobbying, we're sort of a quite, a—
political body that makes a contribution in a slow and methodical way. And that really an
appealed to me —— that really appealed to me to be sort of thoughtful about things.
I —— from my own disability experience, I tended to think a lot, I think part of my disability is
to think a lot and create these theories. It's like, you know, doing disability advocacy and
being manic are very similar experiences. And, my academic background before I got into the
sort of applied social science stuff was in philosophy and psychology so, you know, I
have this sort of philosophical approach to learning about science, so that was very appealing.
But, it's also low, low risk in that you give nice people nice sums of money to do really
interesting things, and if it works we celebrate and move on to do something new,
and if it doesn't work, we say, "Oh, shucks" and move on. You know, that's it. There's not a lot
of down side, so it's been a very attractive job, very appropriate for me and my temperament
and personality over the last 15 years.
03:23:59:27 - 03:24:47:14
Lisa: Who decides in council, or how is it decided which experiments you're going to support?
Graham: It's decided by a large group of people in a planning meeting. There's a meeting
when 30 or 40 people decide what we're going to do based on an analysis of what we've done
in the past, of what the needs are in the present, and what we ought be doing
in the future. And, you know, it's a DD council planning meeting, and it's a lot like an elephant
making love. Maybe I'm not supposed to say this.
Lisa: It's the visual that's tough for me.
Graham: Well, no, it goes on at a very high level with a lot of noise and trumpeting and it takes
at least two years to see any result. That's a DD council planning meeting.
03:25:03:10 - 03:25:54:17
Graham: In my role, it's kind of interested in that I get to suggest things. I get to point out the
likely outcomes of doing certain things, but the policy decision making is done by the people
on the council who are 75 percent people with disabilities with and family members, and it's a
wonderful model for how people with disabilities should be involved on advisory boards, and
councils, and governing bodies, in that we manage to separate the executive function
from the policy making function to the point where people can really blossom in their
separate roles.
03:25:55:19 – 03:27:46:14
Lisa: Thank you. I think, please correct me if I'm wrong, but when you first started with the DD
council, one of your first priorities was perhaps to gather information about quality assurance
for folks with disabilities; would that be correct?
Graham: There was a big focus on a federal level on outcomes of DD —— of the outputs of
measuring what DD councils do. And 15 years later, I'm happy to report that that debate still
is continuing on pretty well the same terms. DD councils, because what we do is
indirect, we do systems change, so we're not responsible for the systems that we're trying to
change, I mean, we work in —— in transportation, but we don't drive the busses; we're not
responsible for that. And, we work in conjunction of changing of so many other systems, from
Pandout, to DPW, to local counties all across the Commonwealth, so it's very
hard to measure the outcomes of DD councils because you can measure us doing our job and
engaging in the process of systems change, and some where you can measure if the systems in
fact changed, but the connection, other than an obscure logic model, is not
easy to draw out and it's very hard to do it in a way that satisfies something like congress who
wants to see, "They bought four with it" or, "They bought four
houses" or, "They bought four jobs".
03:27:48:00 – 03:32:20:01
Lisa: hat I was thinking about was your pilot program with Nancy Thaler, which I believe
started in 1999, where you weren't necessarily measuring the DD councils effectiveness, but
rather the effectiveness of systems?
Graham: Well, this is a nice opportunity to take the learning from Head Start that says you've
really got to measure what matters in peoples lives, and to take the issues from the DD council
that says there's no direct linear translation between a DD council and an outcome in
someone life, and I find myself in the situation within my first year of being in the DD
council when the OMR pack, as it was then known, published its 5 year plan and in there was
this idea that they really ought to have some way of measuring the quality of what they do.
And, so, I took the opportunity to call Nancy Thaler, who was the deputy secretary at the time,
and suggest that the DD council would fund the start up of doing this, if she could fund it on
an on—going basis and together I ended up chairing a group of people who invented the
IM4Q process, which was an interesting task, and it included everyone from representatives
from all of the unions, to representatives from the ARC and P&E, and the Use—Ed, and
including the famous Polly Spare. It was quite a little facilitation task to cheer that
body, but we came up with IM4Q which, I think, it started out with great progress. It started
off saying the system, the DD system, not the DD council system, but the state DD system,
would measure what happened in people's lives in terms of, you know,
were they choosing where they live? Were they choosing their own jobs? Were they choosing
their house mates? Did they feel respected? Did they feel safe? Did they feel protected? Did
they have the things that they wanted? Really important questions in anyone's
life. Important questions in my life, and also for people with intellectual disabilities. And, so,
we put together a system that interviews, now, 6 and a half thousand people a year, and has
an interesting set of data around what's happening in people's lives, where their lives are at.
And, that was rewarding because it didn't have all the inconsistencies and the extraneous
factors that measuring the DD council had.
And, it would have been wonderful had it be integrated into a quality management system
within the state DD system, within OMR or ODP, that actually said, "We're going to manage
the system to maximize people's life outcomes". Which it never got to, you know, despite
—— and this is not a dig at any single administration. None of the administration that this
has been under have really managed to take IM4Q and say, these are the data against which
we hold ourselves accountable for managing our system. They manage the system to be
accountable to compliance with CMS, and quietly and comfortably collected IM4Q
data in the background and didn't really put it to substantial use. So, that was actually both
exciting for me to be there at the birth of that possibility, but a great disappointment that it
never become the source of having a data driven system that I wanted.
03:32:20:17 – 03:33:56:08
Lisa: One of the things I wonder about that process, Graham, particularly early on, is how it is
that you really do is assess people's quality of lives when you're working with a group of
people who traditionally haven't been given much opportunity for choice. I think you had
mentioned, at one point, when we were prepping for this interview, that people
initially answered they were happy and satisfied quite often, but when you dug a little deeper
you found a more, sort of nuanced truth?
Graham: Well, it seems that there's a number, and I don't know what that percentage is,
although apparently 83% of all statistics are made up on the spot.
Lisa: Including that one?
Graham: Including that one, yeah. If you ask people if they're satisfied, and they don't know
what their choices are, or they're scared of losing what they've already got, they will say
they're satisfied and they're happy. And, so, you get very satisfied people in general
regardless of their living situation, but very different numbers in terms of what they're doing,
their community involvement, their choice, their control, and so you have a more nuance
picture that you can get to when you look behind the numbers, but the initial satisfaction
numbers are not very telling, not very informative.
Chapter 4: Self-determination and Community Supports
03:34:03:13 – 03:37:51:09
Lisa: In 1999, Pennsylvania was piloting a self—determination project for people with
intellectual disabilities, and then in 2003, Kevin Casey, when he was secretary ODP, turned
self—determination into policy. I think renamed Self—Directed Services, so 20 years from
that initial pilot project, or more, people can choose to have self—directed services if they
would like, but I'm wondering what the outcomes have been for people who participated in
those services; have they been happier, more satisfied? Have you had an opportunity
to measure or even consider that in council?
Graham: We haven't done it directly. Some of the 'IM4Q' information exists around there. I
don't think, if you were to ask any of the national experts about self—directed services and
sports, whether Pennsylvania self—determination efforts were necessarily what they could
be. I don't claim to be an expert, but, I play one on tv, I don't claim to be an expert, but having
been involved in doing some thinking around this and planning a conference around
this, getting some national presenters in, it seems to me that in Pennsylvania, self—
determination is, you get to choose for an array from a menu that is still determined by
professionals in Harrisburg, and the true self—determination would take the form of saying,
"If we spend $100,000 on you, then if you took that hundred thousand dollars and you and
your loved ones and your circle of support or your micro board, or whatever you have
surrounding you, worked out what best you would do to give you the life that you dream
of with $100,000, including buying things that aren't on the menu, and are not part of DPW's
programs, what would it look like?" I think that opens up the possibility of tremendous
conversations around what would happen if you really had self—determination.
How much people would spend. A certain amount of evidence from some of the New England
states is that given that kind of freedom, people don't spend as much money as was spent by
the professionals. It even opens up the possibility —— and I'll be shot for this
but I'll say it —— it opens up the possibility that in a time of cost of savings and fiscal
tightness, of saying, maybe you don't have a hundred thousand this
year. Maybe you have $97,000 this year. But, would you rather have that to spend for
yourself than to be spent by some professionals in Harrisburg. So, my first response to your
question ask I don't know that what I've seen ODP do really is self—determination and
that self—directed services —— whichever phrase it is that they're using to describe theirs —
— has just come nowhere near the possibilities that are opened by the
idea that people know better than Harrisburg what it is that it takes to run their lives.
03:38:01:21 - 03:40:17:10
Lisa: So, in given those limitations that you described in services, services being a menu rather
than a pot of money that people can choose to spend truly as they wish, do you think that
self—determination or self—directed services really are a viable choice for Pennsylvanians
with disabilities?
Graham: I think they are, and I think they go way beyond the idea of the services that are on
the menu and contain things that were in nothing to do with the menu. I think it includes
things that may cost nothing, which, at the moment in the current system, we're not really
allowed to choose, because they're not Medicaid approved but, you know, the DD council
has been involved in systems that are things like faith community systems, or systems about
recreation, or the way that their communities organize how they go about having their
festivals and their celebrations. And, I think that you need to open the scope of the
discussion to include all of that stuff and more to see how people would like to live their lives,
and maybe they live with someone who is a friend, and is not paid. Or, maybe, you have the
possibility that someone could be a family living provider, but be paid a lot more than they
normally are because there a lot more challenge or demand or need. I think we haven't
begun to explore the possibilities, and I think the great thing about it is that it really is a
non—partisan or cross—partisan set of possibilities that appeals to people from all parts of
the political spectrum. I even —— jaded as I am these days, could get very excited about
doing something like that and we have put some considerable number of hundreds of
thousands of dollars into our new 5—year state plan to pursue some of those possibilities.
03:40:18:16 - 03:44:57:00
Lisa: One of the projects that the DD council is supporting is perhaps finding ways to better
support people with disabilities, including intellectual disabilities, to serve on boards. And, I
know that you've expressed concerns that perhaps the roles assigned to self—advocates to
serve on boards are not always as well defined, perhaps, as they could be. So, I'm wondering
how it is that you provide supports and services in a way that takes the participation of
people with disabilities on boards beyond tokenism?
Graham: Well, I think what happens at the moment is that people are 51% of the board, and
1% of what's paid attention to. I mean, it's just a huge degree of tokenism in terms of policing
people with disabilities on boards, including people with intellectual disabilities and I think
there's a number of problems with that. One is it's insulting to be people to be
asked to be on a board, and then not listened to, or to have things talking about that your not
necessarily an expert in, or have no particular genius in communicating about. One of the
things that's happened to me over the years is that I've been placed in the role of being
advocate of people with mental illness on various boards and committees. And, I
remember one in particular where I was placed on this board, and the stuff that was being
talked about was completely over my head. It was technical, detailed, it required knowledge
of history, and knowledge of laws that I just didn't have and I'm a reasonably
bright, reasonable articulate person, but I came away from those meetings every month
feeling just stupid and humiliated and impotent, and it's my wife's job to do that, not their job
to do it. And, I started complaining about this stuff because, you know, you
think that it's about fixing the disabled person and training them to participate, and so much
in the past as in so many areas of what we do, which we've obviously talking about here, you
know, the first and easiest thought is: Find the person with the and fix them, and teach them
how to do it and how to participate. And, the real problem is the host dominant culture. The
real problem is the situation, not the person with the disability. And I think the problem is
that boards do not know how to be boards. They do not do an adequate division of labor
between policy making and executive function. And, they try to ask boards to be many
experts in particular areas of disability, and then start complaining when not
every person with every disability is an expert in all those things. There are huge and
important questions that people with disabilities, including people with intellectual
disabilities, can answer in terms of how a board rules, and I think it's up to the people who
run boards so say: "We're thinking of doing X or Y. If we do X, then this happens. If we do Y,
then this happens. What do you think, as a person with a disability, should be the choice?"
You can phrase that in a way that almost everyone can participate meaningfully, and
participate meaningfully in a way that the professional can't do —— the professional
can't make a value judgement, a moral judgement, a philosophical judgement about the
direction of services, and we need to run our boards so that we have the boards make those
kind of policy decisions, and not the acting manager decisions that they're currently doing.
But, the solution is not to fix the people with disabilities, the issue is to fix the
boards. It's to fix the dominant culture. So, we just mixed together a whole bunch of my
fantasies —— the stuff that I fantasize about.
03:44:56:23 – 03:46:12:28
Lisa: So, how do you fix the board? I know, for example, you're working, or the council's
supporting a project with Self—advocates United as One, and Mark Freedman called Beyond
Tokenism. Can you tell us a little bit about how that project is trying to bring
boards up to speed?
Graham: Well, it takes a step—by—step level. You know, part of it is to say to the board "If
you want to have meaningful participation of people with disabilities, include them socially at
the beginning of the board meeting, and not have them sitting in the corner waiting to be the
lump on the log." It means saying if your going to have materials, get it out in a way that
people can understand and ,you know, we can have a great debate about linguistic
accessibility for people with intellectual disabilities but put the material in somehow or
another in such a way that people know what they're going to be asked to vote on,
and what they're going to be asked to think about in advance. escalating to the point of are
you asking the right questions? Is this is board—level policy decision, and how do you express
that? What words do you use to put that in, so that people can uniquely contribute their
expertise?
Chapter 5: Societal Shifts
03:46:20:11 – 03:50:22:06
Lisa: Because we're talking about communities and societies becoming more accommodating
to people with disabilities rather than asking people with disabilities to slot it, it occurs to me
that, of course, many people without disabilities think that disability issues aren't relevant to
them, which feels, certainly from my perspective, shortsighted, given that many of us will face
disability in our lifetime either situationally or perhaps longer term as we age. I'm wondering
why —— there's probably no easy answer, but maybe some of your thoughts on why we
don't see better integration and inclusion as a society as kind of our moral imperative. Easy
question, right?
Graham: Real easy question. I would like to think that in some ways the idea that differences
in abilities are part of the human condition will become accepted. Partly, that's because more
people are getting called disabled as the population grows older, and the baby boomers
become what they become. There will be more need for some kind of accommodation of
disability but I would like to think that the sort of working conditions at Google, the sort of
individual attention, individual freedom, flexibility, honoring of creativity would become more
the case than a more regimented, rigid, factory—like production line, especially since
production moves overseas in America. And, I think that should happen not because
someone sat down and said, "This is a moral decision that we made that we ought to open our
doors to different ideas." But, because it's actually successful, adaptive, and effective in doing
business. So, I kind of have this hope that doing disability right, which is about finding what
everyone brings to the table, and honoring it and valuing it, will become something we do
because it fits with some traditional American values of individualism and success, rather than
because we sit down and pass a law, oh we did, didn't we, it was called the ADA, that
says that we out to all believe in those things. I always find it really interesting that the group
that in many ways has got the most public acceptance a non—dominant culture, people who
are gay or lesbian, have that degree of public support in the absence of
legislation rather than because of legislation, so I hold out hope that as America evolves, we
will have a much more interest in ways of doing things that will open more doors two more
people.
03:50:23:03 – 03:51:33:09
Lisa: It's interesting that you mention that group, because some people would theorize that
the way they've been able to bring their issues more into the mainstream is really connected
to their buying power. That people in the media and people who market products who are
able to tap into the gay/lesbian/bi/transgender community very easily and maybe for self—
serving reasons, so I'm wondering how it is the disability community, or what lessons the
disability community might take from a group like that. Particularly when they tend to be
under—employed and maybe not seen as having the market value; the buying power that the
other group might?
Graham: Yet there are billions of dollars in the disability industry and I would just like to stand
by two or three questions and see if people are spending the money that is —— or the
resources that are given to them are on the by themselves and making their own decisions in
their own local communities about what they buy, or how they go about supporting
themselves. I think that's got to bring some degree of economic firepower.
03:51:43:24 – 03:54:15:05
Lisa: Thanks. So, here we are in the U.S., where you know, our country was hopefully
transformed by the Civil Rights Movement as you mentioned earlier, the
ADA, we have a little law called the ADA which has been in place for about 20 years. Yet,
people with disabilities, including intellectual disabilities, can continue to be under—
employed, children graduate school at 21, often with really nothing to move into.
I know that although you’re no longer a Wolfensberger junkie, you were one. Wolfensberger
before he died, seemed to be fairly pessimistic about where people with
disabilities are in community. He thought they were perhaps lonely or marginalized. Maybe it
was where they were four years ago. I'm wondering if you agree with that assessment, or
where you see the community as being today?
Graham: I think rejection and stigma are huge issues, and it's probably hard to imagine how
those things go away. I wonder, sometimes, whether the disability world's view of disabled
people as being special and different and needing to align themselves with the dominant
culture, doesn't actually contribute to that, and that if we were all to adopt a view of
disability that said, the way to deal with accommodation is not to have the person with the
disability being the one doing the changing, but to have the broader culture the one doing the
changing, it might slowly open more eyes, have more people have more contact with people
who are slightly different, but still just the way God made them. And that maybe
we could have some grounds for some degree of optimism.
03:54:17:19 - 03:57:38:04
Lisa: The disability community, which is so very diverse, the diversity should be one of it's
strengths, yet some people have observed that the movement seems a bit fragmented. I
wondered if you would agree with that assessment and if so, why do
you think there would be fragmentation?
Graham: No. We absolutely eat our own babies. The degree to which different disability
communities fight with each other is just ridiculous. Yet, we've attempted to fix that by
artificially insisting that we're all the same and shoving our differences underneath the carpet
so we don't see them. There are people who think that institutional, congregate
settings for people with disabilities incident are a good idea. I happen to think they're wrong,
but I'm not prepped to join in the chorus as treating them as idiots for having that thought.
There are many of them well—intentioned, good people who had looked at the community
and said, "This is a scary place." We need to start having conversations that start off by
allowing us to have differences of opinion. I was once in a meeting where —— it was sort of a
cross—disability group. We were talking about the tobacco settlement and folks with physical
disabilities said, "If they're going to do something about prevention, we're out of here, we're
not having anything to do with this at all." And, others had to explain to them that in
intellectual disability community, prevention was something was at least talked about. We
need to talk with each other about the differences in opinion that we have, and not just
try and pretend we're all the same, and if we ignore the fact that some Deaf people like it be
with other Deaf people because they have the same culture and the
same language, that's not a bad thing. Once we get together and recognize the continuities
and the discontinuities in what we're interested in, then I think we can begin, and only then
can we begin to identify the real enemy. And, the real enemy is anyone who thinks that
difference is wrong. And, yet, we've tried to approach that by denying our own
difference. Difference is good. Difference is exciting. Difference is interesting, and we need
to have more and more of the population, disabled or non—disabled believing that difference
is good and exciting.
03:57:40:00 – 03:59:02:20
Lisa: Given the current political climate, would the disability community be well served if it
aligned itself more closely with other minority groups?
Graham: I think politically, the disability community needs to align itself with the interests of
the folks in charge politically. And, you need to look around at who is being paid attention to
by the people in political power. I would suggest, in a realistic evaluation, that people who are
talking about ways to diversify funding, to marry private and public funding, to involve faith—
based communities in funding, is a way that will resonate with those in political power.
People with disabilities have to look around and see if whether their interests and issues of
cultural and linguistic competence, for example, equally resonate, with people in political
power.
Chapter 6: Reflections on Career
03:59:10:27 – 04:01:00:24
Lisa: I think, Graham, we're just going to shift focus slightly and ask you a little bit about, what
in your career, and what about your work has given you the most sense of personal
accomplishment?
Graham: This is going to sound terribly social—work—y and process—y rather than an
outcome, but it's not so much a particular program or project or grant or something that can
have heads counted at the end of the day. I think that's what's given me
most satisfaction is that I've —— I think what's given me the most satisfaction is that I went
into a council where there were a couple of distinct camps: The public policy types, and the
touch—y feel—y types. And, to the extent that some of them are still there
that actually recognized the benefit and value of each other, recognized the benefit of using
public policy to advance, social policy, or recognizing that social policy or social concerns
should actually drive our public policy. The fact that there all still there,
all still talking to each other, and that we've advanced and defined our values and our
statements of intentions, that gives me the most satisfaction. That we had 30, 40 people still
on board with an even better idea of what they want to do.
04:01:02:06 - 04:01:46:14
Lisa: There is something —— yet to accomplish something that you would like to accomplish
that's still ahead?
Graham: Well, I'm sure that I should say something about my work at the DD council. I would
like to continue to encourage the growth of the group of people what work for me who have
made tremendous contributions and will do in the future. And, for myself, I have novel
writing ambitions, so that's maybe off—track, but, that's there.
END