PATHways Newsletter.pub - NAMI

August/September 2010 NAMI Queens/Nassau PATHways Page
By JANET SUSIN
Perhaps no topic
so clearly divides the
advocacy community
as what to call the
class of illnesses that
we advocate about.
Gertrude Stein may
have argued
otherwise, insisting
that “A rose, is a
rose, is a rose,” and Shakespeare’s Romeo
opined that “A rose by any other name
would smell as sweet,” but when it comes
to the class of psychiatric disorders
commonly known as mental illness, many
mental health advocates passionately argue
that terminology plays a significant role in
how we are viewed as a group and
individuals.
A wide range of terms currently in vogue
Should we use the term mental health
rather than mental illness? What about its
variants, mental health disorders, mental
health issues—much in vogue these days—
or mental health conditions. That last one is
a new term I learned about just recently
from Darcy Gruttadaro, head of the NAMI
Child & Adolescent Action Center
(CAAC). In launching NAMI’s new
website for transition-age youth, Strength
of Us, CAAC discovered through focus
grouping the topic that mental health
conditions was the term preferred by this
age group.
Then there is the biological approach.
Advocates argue that the brain is part of the
body. If we truly believe that mental illness
is just like any other physical illness then
we should use terminology that reflects that
belief. What about brain disorders, or
neurological disorders, or neurobiological
disorders, or neuropsychiatric disorders. I
recall vividly that during the '90s NAMI
favored this approach and used the phrase
biologically based brain disorders, or just
brain disorders, interchangeably with
mental illness. This was an approach also
favored by Yale researcher Dr. Enid
Peschel, who coined the phrase
‘neurobiological brain disorders’ and
advocated strongly for its usage until her
untimely death in 1994.
Having just returned from the NAMI
From the President
The Debate Continues: What to Call Mental Illness
education conference in Washington, I was
struck by a new twist on this controversy.
Dr. Thomas Insel, head of the National
Institute of Mental Health (NIMH), argued
that we should stop separating mental
illness from other brain disorders. He
prefers the inclusive term ‘neurological
disorders,’ lumping mental illness with
autism, mental retardation, stroke, and
Alzheimers, really anything that affects the
brain. And speaking of the NAMI
convention, as I listened to researchers
speak I was struck by how interchangeably
they used all the terms—mental health,
mental illness, neurobiological disorder,
psychiatric disorders, brain disorders, really
the whole gamut.
I’m reminded of the time in 1945 when
Congress was considering what to call what
eventually became the National Institute of
Mental Health. It was originally supposed
to be called the National Neuropsychiatric
Institute, but according to E. Fuller Torrey
in his book Nowhere to Go: The Tragic
Odyssey of the Homeless Mentally Ill, that
name was considered “too narrow, too
medical for the tasks it would be asked to
do.” Eventually the name National Institute
of Mental Health won the day and
according to Torrey, that gave the term
mental health “official status.”
Is this really the time for a name
change?
As for me, I take a historical approach.
During the 19 th century when the great
reformer Dorothea Dix crisscrossed the
country raising awareness about the
appalling way people with mental illness
were housed and treated, the term in vogue
was lunacy, and people exhibiting
psychiatric symptoms were called lunatics.
Dix eventually succeeded in creating 32
“mental hospitals,” which formed the basis
for the state hospital system that still
survives today. But less well-known is the
fact that she also advocated for a change in
terminology. Believing that lunacy and
lunatics were derogatory terms, she wanted
to replace them with “mental disease” so
that people would view insanity as a
medical condition, not a character flaw.
Eventually, when tuberculosis became
rampant and “disease” synonymous with
contagion, the term morphed into the
familiar phrase we use today, mental
illness.
Why the history lesson? Because it
seems to me that no matter what phrase we
use to describe the condition, eventually
some will find it offensive and
stigmatizing. But when it comes to the term
“mental illness,” I am not one of them. In
fact, when I first heard those words applied
to my son I found it a relief. At last I
understood where all those strange
symptoms and the horrifying downward
spiral were heading. My son had an illness
– a mental illness – and it could be treated.
The term mental illness is shedding its
stigma
That was 23 years ago. In the interim
I’ve had the opportunity to speak to many
high school and college students about
mental illness. What I’ve found is that over
the years the term has become less
stigmatized, not more. When I speak to
classes and ask students if they know
someone with a mental illness I don’t hear
any giggles. And when I ask them if they
have a family member with a mental illness
they don’t turn around to see who’s raising
their hand. And, most surprisingly of all,
when I ask them if they themselves have a
mental illness inevitably someone raises
their hand and discloses – I have bipolar; I
have OCD; and, yes, even schizophrenia. If
anything, I think there may be even a little
glamour associated with mental illness
these days. Maybe it’s all those stars who
have disclosed that they have bipolar. Or
the sports heroes who speak about their
depression. Or maybe young people are
just becoming more tolerant and accepting.
Who knows? But I certainly see a trend in
the right direction.
I guess you can also say I believe in
calling a spade a spade. Psychiatric
disorders like schizophrenia, bipolar
disorder, major depression, OCD, and
panic disorder are medical conditions and
calling them mental health conditions when
they’re quite the opposite takes me back to
the days when cancer was spoken of in
hushed tones as “the big C.” When they
start referring to cancer as a “healthy cells
condition” and diabetes as an “insulin
issue” then, maybe then, I’ll become more
sympathetic to this terminology. But until
then I’m sticking with mental illness.
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