Darby Penney’s work for the human rights of the psychiatrically labeled

Yesterday when I wrote about my frustrations with the liberal or progressive movements in this country Darby Penney responded to that post with this comment (slightly edited):

Gianna, thanks for raising this issue. I was active in progressive politics long before I became an activist on human rights issues for people with psychiatric histories, and have been disappointed over the years by the left’s seeming inability to understand our issues as part of a broader human rights agenda. One very pleasant surprise for me was being chosen as a 2005 Fellow by the Petra Foundation, which honors social justice activists…

(see below my acceptance speech where) I attempted to explain our movement to the Petra network. It has been a real honor for me to be accepted as an equal by this amazing group of activists.

Description of the Petra Foundation from their website:

The Petra Foundation seeks out and champions unsung leaders who are making distinctive contributions to the rights, autonomy and dignity of millions who are marginalized in America.

Sustaining its commitment to the Petra Fellows and fostering their collaborations, the foundation strengthens a national network of citizen activists working across the divides of age, ethnicity, class and issue to build a more just society.

Bio of Darby Penney:

Darby Penney is the author, with Peter Stastny, of The Lives They Left Behind: Suitcases from a State Hospital Attic (Bellevue Literary Press, 2008). A traveling exhibit based on the book is currently on a national tour The Suitcase Exhibit. Darby was formerly the Director of Recipient Affairs at the New York State Office of Mental Health, and is currently a Senior Research Associate at Advocates for Human Potential, Inc.

Darby Penney’s 2005 Petra Fellowship Acceptance Speech
12 November 2005

Thank you, Petra Foundation friends, for this appreciation of my work
promoting the civil and human rights of people with psychiatric disabilities.
I’m just one of thousands of activists across the country and across the world
involved in this sometimes invisible and often misunderstood movement,
and so I feel that I’m receiving this honor on behalf of all of my peers.  I’d
especially like to recognize my friend and co-conspirator Ron Bassman, who
nominated me for the Petra Fellowship.

I feel so at home among you, because, no matter what our particular
focus, we are all struggling to end fear, ignorance, oppression and hatred.
This means so much to me because, for the first time that I’m aware of, a
national group of progressive activists has recognized that those of us
fighting for the rights of mental patients are part of the broader social justice
movement.

This recognition is long overdue.  A few years ago, my fellow activist
Judi Chamberlin was asked by the British journal Mind to interview Noam
Chomsky about human rights and psychiatric disability. The thrust of his
comments was that he considered it a medical issue, not a social justice
issue. Judi was so discouraged that she didn’t even bother to transcribe her
notes.  So, we still have a long way to go. And I want Chomsky to know he
can no longer rely on my write-in vote in presidential elections.

I thought long and hard about how to explain the scope and
significance of our issues to you in five to seven minutes.

I decided I should tell you that people with psychiatric disabilities are
the single largest disability group in the US, with an unemployment rate of
85%. So most people in this group are dealing with the full range of
problems facing all Americans who live in poverty. And it’s important to
note that people of color are disproportionately institutionalized in
psychiatric hospitals.

I thought I should call your attention to some of the common myths
about mental illness that shape both public opinion and government policy,
like the widespread belief that people with mental illness are violent.  A
study of this issue funded by The Mac Arthur Foundation found that, on
average, people with psychiatric disabilities are no more violent than the
general population.  On the other hand, studies have shown that they are up
to 17 times more likely than most Americans to be victims of violence.

And then there’s the medical model myth  – the belief that people just
need to take their medication and everything will be all right.  But the
evidence shows that psychiatric drugs are not particularly effective and that
they cause a range of serious side effects including permanent neurological
damage, morbid obesity, increased risk of suicide, diabetes and heart
disease, and even sudden death.

A report by the National Council on Disability calls the treatment of
people with psychiatric disabilities “a national emergency and a national
disgrace.”  The report goes on to say that “NCD heard testimony graphically
describing how people have been beaten, shocked, isolated, incarcerated,
restricted, raped, and physically and psychologically abused in institutions
and in their communities.  The testimony pointed to the inescapable fact that
people with psychiatric disabilities are systematically and routinely deprived
of their rights, and treated as less than full citizens or full human beings.”

It’s important that people know that we are the only class of citizens
for which preventive detention is not only legal, but is a daily occurrence,
and that it happens with only the slightest wink and a nod toward due
process.

I thought I should tell you about the on-going national campaign by a
right-wing group called the Treatment Advocacy Center, which has helped
pass involuntary outpatient commitment laws in many states. These laws
mean that people living in the community, people who have not been legally
determined incapable of making their own medical decisions, can be
subjected to forced treatment, including unwanted electroshock or
involuntary injections.

If I had the time, I could talk about dozens of other issues that
contribute to the oppression and second –class citizenship of people with
psychiatric disabilities. If I had to pick the single most salient issue, it is the
fact that the entire public mental health system rests on the threat of force
and coercion, rather than on compassion and empowerment.

Our struggle has many fronts – grass-roots self-help organizing,
legislative work, protest, research, civil disobedience, litigation, and more.  I
spent much of my career working to change public policy from the inside,
and, in the end, I was not particularly successful.  While we made a number
of small but important gains, it didn’t take long for shifting political winds to
blow most of these changes away.

So more recently, I’ve worked to change public opinion through
cultural projects, including museum exhibits, oral history, film, radio
documentaries, and theatre.  These approaches have the potential to reach
ordinary people in a way that more traditional advocacy techniques may not.

I’m very lucky that some incredible artistic raw material found me,
particularly the abandoned suitcases discovered in an asylum attic that
became the basis of a major exhibit at the New York State Museum on the
lives of 12 of the suitcase owners.

I used to lurk in the exhibit galleries to overhear visitors’ comments.
The most frequent thing I heard was “My god… that could have been me!”
Watching so many strangers express empathy with long-deceased mental
patients, I witnessed the power of art to persuade the heart.  I saw concretely,
as the early labor movement activists taught us, that we need bread and
roses, too.