Page 12
Commentary
Street Roots • Dec. 11-17, 2015
Advocacy by and for people with mental illness: The DIY Guide
We are confident because we study other
American civil rights movements that have
CONTRIBUTING COLUMNISTS
gone before us. We learn from their tactics
and trace their history. Through study of
Then we are out and about, meeting
their success wé can estimate the timeline
and tweeting, connecting with
of our civil rights movement.
people in their first years of
Compared to other civil rights
recovery from mental illness, invariably they
movements, where are advocates for people
want to do something. Something big!
with mental illness now?
Something political and artistic and very
We are where African American advocates
important They want to make the change
were,
circa 1920. Most of our people live in
so no one else will have to endure the same
chronic poverty, ghettos, institutions or
degradation, the same stereotypes and
doorways. We are loathed by our neighbors,
scorn, the same factory-farm labeling and
undereducated and underemployed,
worse-than-nothing treatment they’ve been
dependent on scraps, charity and
through already in their efforts to get well.
government largesse. We are arrested
They are eager and ready, and they always
without reason and held without bail. We are
ask an eternally tricky question, what can I
beaten and killed with impunity.
do to make a difference?
Our Thurgood Marshall is working toward
A tricky question indeed. There are many
his undergraduate degree. Our Martin
ways to answer; none are simple or easy-
Luther King is holding his mother’s hand on
so we’ll start hard.
the way to kindergarten. Our Barack Obama
We are experienced advocates for people
is yet to be born.
with mental illness who believe fiercely in
Our day in the streets,' our NAACP, our
what we’re doing, and we’d love to recruit
Mexican American Legal Defense Fund, our
you and your friends! But be warned: If
Human Rights Commission, our victories in
maintaining your psychiatric wellness is a
Congress and the Supreme Court, our full
priority in your life, we can’t in good
freedom and civil rights - will not occtir in
conscience recommend mental illness
this generation, but the next, Or the next
advocacy as a vocation. It’s a lonely
after that. We will not live to see the fruits
business, with few wins and much adversity.
of our work, but you young people, newer to
In fact, it’s a general rule for us: If a
life and newer to advocacy might Either
campaign requires additional medication,
way, what we do today matters vitally: it is
skip it
the structure upon which tomorrow will be
That’s a little joke between advocates
built, a tomorrow of freedom and equality
when we’re together swapping stories.
for our children’s children.
. Although we just finished warning you
From this perspective, we can have hope
from the advocacy we do, we nevertheless
even when our efforts appear hopeless. We
believe it is the most important civil rights
are a moment in the movement; there were
work of our time. We, and many others
moments before and 'there will be many
around the world, are nothing less than the
vanguard of a nascent civil rights movement, more in the future.
So what do we do now, in this moment?
the bare start of a struggle yet to be
We do what African Americans who sought
recognized by the mental health industry.
equality and liberty did in the 1920s: we
We seek something small, simple and so
organize and build our organizations. We
universal that normal people take for
collect and write our history. We repair the
granted: participation - just participation,
language which diminishes our dreams. We
without discrimination or repression - in
persuade. We show up. We learn how to be
the social and political life of society and
kind to each other, nurture leaders when we
state.
find them, and sustain those in the
We don’t have it now. We never have had
trenches. We welcome others as friends.
it Without a fight we’re never going to get
. That’s a rather wide open mandate. Not
it
so helpful actually.
People with mental illness are the most
What should be the priorities for a person
discriminated against class of people, here
who wants to be part of the change, part of
in Oregon and the world over, today or at
building a new nation? What should be first?
any point in history. We are hated as a
What can wait? What can be successfully
cultural given and always have been - from
changed? What is impossible and therefore
being cast adrift on a Ship of Fools, to being
should be turfed? What is sustainable? What
chained naked in an asylum cell; from the
is beneficial?
enthusiastic embrace of lobotomy, to the
We know what happens to people who
dull brutality of death by cop.
But now, with a few legal protections here don’t get help. They live in prisons and on
the streets, until, in misery, terror, panic
and a few medical advances there, with
technology advancing our ability to organize, and hatred, they destroy themselves or
others. Loathed and forgotten, they die. We
with society more and more accepting of
see them in mugshots on the news. We see
formerly despised groups, we see an
them sleeping in alleys. We see them lost
opportunity for change. And we believe we
and alone, exiled in the middle of this grand
can succeed.
BY JASON RENAUD
AND JENNY WESTBURG
TF "JT
w/1/
V V
and wealthy city.
These are our brothers and sisters, our
kin. We got help, and, for the most part, are
okay. Ups and downs, but mostly okay.
When we get in recovery and get the
message our work becomes a singular and
holy mission to help others. How can we
help our brothers and sisters get okay, find
normal, start their recovery journey?
Simply put: What do we want? Evidence
based, trauma-informed, barrier-free, long
term, culturally competent, dual diagnosis
treatment on demand..
When do we want it? Now. What do we
want? Respect. Safety. Civil rights. When do
we want it? Now.
Here’s what you need to know just to get
some foundation and framework about
mental illness advocacy. Just to get started
in the right direction, with some clarity,
come thoughtfulness and foresight. Start
with yourself.
You are not a diagnosis; You may be sick
or symptomatic, but you can get better. Say
this: I have a diagnosis of mental illness, but
because I work a program of recovery, my
symptoms are reducing or reduced or gone.
I can get better. I have an illness in
remission. I am not sick. I have an illness. I
am not a sickness. I am not my illness. I can
get better.
Sometimes we are sick. Sometimes we
can’t honestly say we’re in recovery.
Sometimes our symptoms overwhelm us
and we’re frightened or delusional or can’t
get out of the house. But our intention is
always to recover, to be well, to be symptom
free, to live a full and happy life, to have
friends and be engaged with our community.
We are human beings and we aspire to
health and not a diagnosis.
Get in recovery. If you’re symptomatic,
get help. No one got sick alone, no one gets
well alone: ask for help, get help, be helped.
Your path of recovery is the story of your
new life, of regaining your life. And you need
to be without symptoms to do this work, to
get a seat at the table, to get respect, to stay
at the table. .
Once you have a lived a duration of time
relatively symptom free, start talking about
how you did it Others want to know about
your recovery, others need to be inspired by
your recovery. Keep it simple, practice in
the mirror or talk to your dog. Work a jpke
in. Your story of recovery will be unique and
true and revealing - but it is the basis of
your credibility to. be a mental health
advocate. Work on it. Start getting well.
You help when you tell-your story to
normal people. Further, you help when you
give your money and give your time.
Everyone can give $25 to support an
organization they believe makes a
difference. Twenty-five dollars a year. That’s
about seven cents a day. Yes everyone can
do this. Do it this way - buy a copy of Street
Roots from every vendor you find. Buy four
or five a week. Ask the vendor’s story. Stay
awhile. They have a story they’re proud to
tell.
Give your time. Call an organization you
believe in and ask, can I volunteer?
Sometimes the answer will be no,, they don’t
have the capacity to put you to work. But
they know who can and will refer you to one
which can put you to work. Find work and
give your time.
Big Question: If I don’t have a mental
illness, can I advocate for people with
mental illness - or should I be an ally of an
advocate?
Working as a doctor or nurse doesn’t
make you. an advocate. Saying you represent
our issue robs us of the opportunity. Your
action asserts privilege and continues
oppression.
Managing a program or providing direct
service doesn’t educate you about OUR
experience. Your story, your perspective is
important and vital. If you supplant it to
usurp ours you miss an opportunity to speak
your own truth to power.
Self-styled allies often step forward to
speak on behalf of people with mental
illness. This should not be welcomed. We
speak for ourselves. These allies would not
assume a position of leadership for a
different religion or race, for a gender
identity they don’t possess, or for a political
party they aren’t a member of. They should
not speak on our behalf.
We need allies to enforce the respect and
safety required for our voices to be heard.
We’re easily dissuaded from activism - the
threat of disregard and retaliation are real to
us. Respectful and side rooms are rare and
very helpful to our experience and success
as advocates.
Big Question: Yes, but where is the
revolution? Where is the fight I want to
fight?
Our paths toward illness were each
unique. Our recoveries are also singular.
Mental illness defies organization - no
mechanistic approach to help works. What
works is one person choosing to help
another. Choosing to help is healing to both
the healer and the sick.
Our revolution is individualized as well.
Each of us is pushing, pushing, pushing,
squeezing, squeezing an amorphous fucking
thing called “fear” or “hatred” or
“discrimination.” Together and separately,
by telling opr stories of recovery to normal
people, one at a time, in our own time and
in our own way, we reduce the pressure,
name the thing, decrease the panic.
Tell your story. Tell it in your own way
and in your own time. Tell it again and again.
Tell it to those who listen with kindness and
respect.