Advocacy By and For Persons With Mental Illness: The DIY Guide

by Jenny Westberg & Jason Renaud for the Mental Health Association of Portland
Published in Street Roots – December 10, 2015

When we are out and about, meeting and tweeting, connecting with people in their first years of recovery from mental illness, invariably they want to DO SOMETHING. Something big! Something political and artistic and very important. They want to make THE CHANGE so no one else will have to endure the same degradation, the same stereotypes and scorn, the same factory-farm labeling and worse-than-nothing treatment they’ve been through already in their efforts to get well. They are eager and ready, and they always ask an eternally tricky question, WHAT CAN I DO TO MAKE A DIFFERENCE?

A tricky question indeed. There are many ways to answer; none are simple or easy – so we’ll start hard.

We are experienced advocates for people with mental illness who believe fiercely in what we’re doing, and we’d love to recruit you (bring your friends!) But be warned: if maintaining your psychiatric wellness is a priority in your life, we can’t in good conscience recommend mental illness advocacy as a vocation. It’s a lonely business, with few wins and much adversity. In fact, it’s a general rule for us: if a campaign requires additional medication, skip it.

That’s a little joke between advocates when we’re together swapping stories.

Although we just got done warning you from the advocacy we do, we nevertheless believe it is the most important civil rights work of our time. We, and many others with us scattered around the world, are nothing less than the vanguard of a nascent civil rights movement, the bare start of a struggle yet to be recognized by the mental health industry. We seek something small, simple, and so universal that normal people take for granted: participation – just participation, without discrimination or repression – in the social and political life of society and state.

We don’t have it now. We never have had it. Without a fight we’re never going to get it.

People with mental illness are the most discriminated against class of people, here in Oregon and the world over, today or at any point in history. We are hated as a cultural given and always have been – from being cast adrift on a Ship of Fools to being chained naked in an asylum cell, from the enthusiastic embrace of lobotomy to the dull brutality of death by cop.

But now, with a few legal protections here and a few medical advances there, with technology advancing our ability to organize, with society more and more accepting of formerly despised groups, we see an opportunity for change. And we believe we can succeed.

We are confident because we study other American civil rights movements that have gone before us. We learn from their tactics and trace their history. Through study of their success we can estimate the timeline of our civil rights movement.

Compared to other civil rights movements, where are advocates for people with mental illness now?

We are where African American advocates were, circa 1920. Most of our people live in chronic poverty, ghettos, institutions or doorways. We are loathed by our neighbors, undereducated and underemployed, dependent on scraps, charity and government largesse. We are arrested without reason and held without bail. We are beaten and killed with impunity.

Our Thurgood Marshall is working toward his undergraduate degree. Our Martin Luther King is holding his mother’s hand on the way to kindergarten. Our Barack Obama is yet to be born.

Our day – in the streets, our NAACP, our MALDEF, our HRC, our victories in Congress and the Supreme Court, our full freedom and civil rights – will not occur in this generation, but the next, or the next after that. We will not live to see the fruits of our work, but you young people, newer to life and newer to advocacy might. Either way, what we do today matters vitally: it is the structure upon which tomorrow will be built, a tomorrow of freedom and equality for our children’s children.

From this perspective, we can have hope even when our efforts appear hopeless. We are a moment in the movement; there were moments before and there will be many more in the future.

So what do we do now, in this moment? We do what African Americans who sought equality and liberty did in the 1920s: we organize and build our organizations. We collect and write our history. We repair the language which diminishes our dreams. We persuade. We show up. We learn how to be kind to each other, nurture leaders when we find them, and sustain those in the trenches. We welcome others as friends.

That’s a rather wide open mandate. Not so helpful actually.

What should be the priorities for a person who wants to be part of the change, part of building a new nation? What should be first? What can wait? What can be successfully changed? What is impossible and therefore should be turfed? What is sustainable? What is beneficial?

We know what happens to people who don’t get help. They live in prisons and on the streets, until, in misery, terror, panic and hatred, they destroy themselves or others. Loathed and forgotten, they die. We see them in mugshots on the news. We see them sleeping in alleys. We see them lost and alone, exiled in the middle of this grand 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 goodly 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 joke 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, really everyone, can give $25 to support an organization they believe makes a difference. Twenty-five dollars. 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 safe 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 in itself 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 our 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.