How did you come to do the work that you do?
jc: It was all based on my own
experiences with the mental health system. I saw that something was very wrong
and that people needed to do something about it-especially the people that this
was currently happening to. Five years after I got out of the hospital, I found
one of the [ex-patient] groups in New York. I found out that there were other
people who felt the same way! It just seemed so logical to us that locking
people up and depriving them of their basic humanity couldn't possibly be good
lh: What issues did you focus on when
you first organized over thirty years ago?
jc: It's the same stuff we're doing
now. Just trying to get the issues across. That this is about rights, it isn't
about "better treatment" or about needing people to take care of us. We're human
beings, we're citizens. Why don't we have these rights that supposedly the
Constitution and the Bill of Rights talk about? Why does it suddenly not apply
lh: Was there an attempt in the
beginning to reach out to the feminist movement?
jc: We tried to reach out to everyone.
The early 1970s was a time when all these movements were growing. We made some
good contacts with the gay rights movement. But I've always felt that the
feminist movement just didn't seem to get it. There are an awful lot of
therapists in the movement, and when you talk to women who identify as
feminists, and you mention that you're involved with mental health issues, they
always mention Phyllis Chesler's book Women and Madness. But Phyllis Chesler's a
psychologist, and it's a book in which somebody else talks for us. And this
comes from a movement that says that women should speak for themselves, but
somehow they think it's OK that a psychologist should talk for women who are
"mentally ill" and getting locked up. She gets it so wrong in that book, and it
really hurts me when that's considered a feminist classic.
lh: How are women uniquely affected by
jc: Well, there's an assumption that
if you have a psychiatric diagnosis, you couldn't possibly be a good mother.
There's also a distinction made between women who are distressed and women who
are "crazy." You see this in the battered women's' shelters and the crisis
centers, that if you're battered and subsequently distressed to an "appropriate"
level then that's OK, but if you're distressed beyond that, you get packed off
to the mental health system. And that's awful. A long time ago, a group of women
at one of the psychiatric survivors' conferences said, "we reject the idea that
there's an 'appropriate level for our anger' when we're raped or battered."
lh: Can you talk about the experience
of writing On Our Own!
jc: At the time I wrote it, there
wasn't anything in print about our experiences. There's a long history of people
writing books about their mental health experiences, but certainly not about
so-called crazy people getting together and organizing for rights and
liberation. I really wanted to get that message out. Over the years, so many
people have told me, "that book helped me, it came along and let me know I
wasn't alone. I was able to get through what I was going through, and to hook up
with other people and get involved." You couldn't ask for more than that as a
lh: It seems that some of the advances
made by our movement, however small, are being slowly eroded. Can you speak a
little bit more to that?
jc: When I first got involved in the
early 70s, the mental health system was very different than it is today. In some
ways it was much worse, because you had the long-term institutionalization that
exists less today. And in some ways it was much better-because there wasn't this
biological determination, this idea that everybody needs to be on drugs forever.
And so today you may or may not be in an institution, but you always have to be
in "treatment"-engaged with the mental health system in some way. And the mental
health system becomes so all-encompassing-providing housing, etc. All the
services are provided on the condition of you being "compliant" with the system.
And that didn't really exist before.
lh: And I think it gets back to how
psychiatry is so all-pervasive in our culture.
jc: Yeah, and how people are so
convinced that what we're dealing with here are "brain diseases," and I'm sure
if you asked the average person on the street what causes mental illness, they
would say that it's a gene, or a chemical imbalance in the brain-all these
little slogans that there's no scientific evidence for! The science isn't there
to back this up, but the PR certainly is.
lh: Can you tell me a little bit about
the Bush administration shutting down the Technical Assistance Centers (TACs)
such as the National Empowerment Center?
jc: It's this little tiny federal
pro-gram-all five TAC's-it's all together a $2 million dollar program, which
doesn't even compute on a federal level. And here the administration went out of
its way to single out this teensy little program. You'd think on a superficial
level, we would fit in well with their Republican right-wing agenda-people being
self-sufficient and "getting back into society." The initial attempt was to yank
our funding right then and there, before the end of fiscal year 2003, and that
we fought. And I think the administration saw that we could rally support, and
we did rally thousands of phone calls and emails. So we got our funding for the
rest of the fiscal year, but with a cut.
lh: Can you say more about what the
jc: Three out of five of the TACs are
run by consumers and survivors. They provide information, and technical
assistance and knowledge, about self-help, about rights, about connecting up
with others who have experienced psychiatric abuse. There's so much that you can
read about drugs, and institutions, and formal programs. It's much harder to
find information about alternatives, information telling you that people can get
better, and saying "here we are, people who've been diagnosed with these
supposedly lifelong illnesses, who are functioning well." We provide a lot of
hope for people that they can do it too. I think it's very important to be out
there. There are limits to what TACs can do because they are government-funded.
So I think it's important to have the independent groups out there, it's
important to have the government-funded groups-it's important to have the whole
People need hope. When you get
diagnosed with a major mental illness, you're probably also told that you have
something wrong with you on a genetic or chemical level, that you have to be on
drugs for the rest of your life, that you're probably never really going to get
better. That's taking hope away from people. So to provide hope for people-it's
just thrilling. All the letters, the phone calls, the emails we get. People
didn't know, until they found us, that they can recover, that they can have a
good life, that they're not just doomed to being good little mental patients.
That's very important.
lh: On the issue of forced psychiatric
treatment, what do you say to people who tell of friends or relatives who were
forced into treatment and were actually helped by it? The idea that "by
criticizing the mental health system, you're discouraging suffering people from
jc: Help is only help if you think
it's help. I certainly don't want to take any options away from people. I want
to increase people's options. So if somebody has a lot of options, including
medication, and they decide that medication's the right one, that's very
different from medication being the only option, and it being forced on people.
It's a strange kind of reasoning. The one that always gets me is, "if we had
been able to get our relative into treatment, she or he wouldn't have killed
themselves." That might be a way of soothing your pain, and if you want to
soothe your pain that way, OK, but you don't know that.
When I was in the crisis center, I had
this real break with reality kind of situation, and after a couple weeks of
being in this totally supportive and helpful environment, I was OK. And for
years afterwards, I would think, "well, I've had two breakdowns in my life. One
was really severe, because it lasted for so long, and one was pretty mild
because it was over quickly." Then I realized that if the first time, I had been
treated like a human being instead of being hospitalized in this horrible place
and treated as less than human, maybe that one would have been over in a couple
of weeks too. And again, we are not about trying to take away from people
anything that they find helpful, it's about giving people choices and
information. Anyone who's opposed to giving people more choices and information.
I just don't get it!
lh: What is your vision of an
alternative to the mental health system?
jc: There's no single model because
different things work for different people. The idea is to give people the space
to find what it is that makes them feel better, and to help them get away from
what makes them feel worse. And to find ways to enable the things the person
wants to happen for her. And ideally there should be multiple settings where
that takes place. It could be in your home, if that's the most comfortable place
for you, or in someone else's home. I would say probably not in an any kind of
institution, because institutions by their nature are very dehumanizing.
lh: What would you say to women who
are going through a crisis and don't have access to alternative services?
jc: It's very hard. If someone
needs something today, to tell them we're trying to make it possible soon isn't
enough. They need to know that so many people have recovered. And that there are
so many people who still have symptoms, but they are working, they are going to
school, they have a social life, a love life. There's real life out there.
That's our biggest unity with the disability movement. Even if you have a
disability so severe that you can't move your body, you can still live a full
life. And we too may need some extra help or some extra accommodations. But that
shouldn't get in the way of living a full life. The idea that you can't have
these things unless you're "normal" disenfranchises an awful lot of people. The
fact is that people are living their lives and making choices with disabilities
of all kinds. As a society, we are so fixated on the idea that there's only one
way of doing things. I've learned from my work in the disability movement that
people possess an amazing variety of capabilities. The human spirit is what's
Leah Harris interviewed Judi
Chamberlin, who is a psychiatric survivor and an activist since 1971 in the
consumer/survivor/ex-patient movement. She has been a member of the Mental
Patients' Liberation Front (MPLF), one of the earliest ex-patient groups, since
1975. MPLF operates the Ruby Rogers Advocacy and Drop-In Center in Somerville,
Massachusetts, a self-help center which she helped to found in 1985, and which
is run by and for people who have received psychiatric services. Chamberlin is
the author of On Our Own: Patient-Controlled Alternatives to the Mental Health
System and has also written numerous articles about the movement, self-help, and
Chamberlin is affiliated with the
Center for Psychiatric Rehabilitation at Boston University, where she directed
studies of people who use ex-patient run self-help groups, and on personal
assistance services for people with psychiatric disabilities. She is also a
co-founder and associate at the National Empowerment Center, in Lawrence,
Massachusetts, a federally-funded technical assistance center which serves the
Harris, Leah "Interview
with Judi Chamberlin". Off Our Backs. FindArticles.com. 18 Jan, 2010.
Copyright Off Our Backs, Inc. Jul/Aug 2003
Provided by ProQuest Information and Learning Company. All rights Reserved