stigma and barriers to care - Uniformed Services University of the ...

Mitigating Stigma and Barriers to Care 69
self-help is a great way to go in terms of trying to decrease stigma. I mostly agree
with that but I am struck by some perplexing data we found. We were part of an
eight state multisite study that SAMHSA-CMHS just put out on consumer operated
services. People in the study were randomized to a consumer operated service,
self-help, or control group. The mean number of people going to a session was one.
People would not go. What is really germane to stigma change in self-help groups
is the decision to go in there and make an attempt to change.
The last thing I want to discuss is that I think the best kind of stigma change is
targeted locally. PSAs tend to target the overall population. What I think we need
to do is narrow the focus down into landlords and teachers. Local might break
down to the same branch of service, people of the same ethnicity or same disorder,
or we may get more localized by looking at the base in which somebody lives or the
regiment to which they are assigned. We also need to look at the issue of distressed
people: the depressed employee, the suicidal adolescent, the panicked drug user, and
the soldier with PTSD. These are all populations that NIMH and other organizations
recognize as important groups.
I have presented a nice balance of the different research we have been doing in
terms of analyzing stigma change. I hope today and tomorrow we have an opportunity
to talk more about all of these things.
DR. ESTROFF: I would like to acknowledge my research assistant for this talk,
my brother who was an Army doctor. He retired as a Colonel last year and is now
a civilian doctor at Grafenwoehr. There are two things I would like to do today.
First, I want to set some common ground in terms of how we understand and deal
with stigma and discrimination in general. Second, I want to take some time to talk
about several unique challenges.
I want to start with this idea that mental illness is something that we are and not
something that we have. I have a quote from Mark Vonnegut’s wonderful book, The
Eden Express: “Most diseases can be separated from one’s self and seen as foreign,
intruding bodies. Schizophrenia is very poorly behaved in this respect. Colds, ulcers,
flu, and cancer are things we get. Schizophrenic is something we are. It affects the
things we most identify with making us what we are.” We did a longitudinal study
on self-labeling as part of a much larger project. We found that it was remarkably
unstable and amenable to change. The participants were early in their careers with
serious mental illness. We thought that when they started receiving disability payments
they would label themselves. Most of them changed their labels from mentally
ill to disabled. The process of labeling is dynamic.
A broad review of the anti-stigma strategies out there include human rights and
civil rights, the “We’re just like everybody else” education that Pat Corrigan just
discussed, proximity, or contact, and legislation. The Americans with Disabilities
Act (ADA) and the right to treatment are examples of legislation we have tried.
One of the questions I always ask my students is “Why did we even need an ADA”
That should tell us a great deal. We need to shift the focus to something like your
inability to see my ability is your disability. We also need to challenge what is already
established. Only 5% of people who are disabled are in wheelchairs but there is one
universal symbol. Why did we adopt that
The next set of anti-stigma strategies are medicalization, brain disease, empowerment,
recognition, self advocacy, and chemical imbalance, which I am delighted to
see has a growing consensus that it was a failed strategy. One of the anthems is that
stigma is the real disease, not schizophrenia or any other disorder. “I don’t want pity,
I want rights.” This is politicizing rather than pathologizing.