[Editor’s note: this author has chosen to publish her story anonymously in order to protect her identity at her new job.]
My now ex-husband was a clinical director of a mental health clinic and monstrously abusive, not just to me but to his clients (he eventually lost his license to practice after harming many lives). The story was buried remarkably well, because stories of crimes that involve discredited victims are easy to bury. Having a mental health diagnosis automatically makes the world around you deaf, particularly if you are the victim of one of the system’s heroes. However, that is a story for another time and place; this one begins with the impacts that settled in on my soul after the divorce.
After years of abuse and gaslighting, I believed (as did everyone in my husband’s considerable sphere of influence) that I was completely broken and irretrievably mentally ill. I was lost and buried alive in an identity far too small for me, a DSM label that was destroying me with its stigma and shame. I went through waves of depression, in a sort of coma emotionally, floating in a haze of psych medications in a life I’d completely given up on.
Living without hope is a tortured existence. I considered myself a garbage person, dumped at the margins of society as a problem no one knew what to do with, including me. It was during this time that I first heard of “recovery,” perhaps the sweetest word I’d ever heard. Patricia Deegan’s work “A Conspiracy of Hope” landed in my hands, and something took root in my spirit. A little spark of hope began to burn.
Around that time I heard about a program called “Consumer to Provider,” based on the premise that mental patients, or what they euphemistically referred to as “consumers,” could be trained to provide mental health services. It was a 6-month program with a 6-month internship and really a good idea. Built on the notion that “consumers” might have something to contribute as a community asset, they captured an invaluable and life-changing truth. We were, in fact, gifted healers: an untapped treasure of passion, creativity and help.
In the world of consumers, those mental health therapists that considered themselves saviors and heroes seemed as a rule untouched by deep trauma and suffering. They weren’t all that credible to anyone that had been coerced into treatment. However, the expertise of those with lived experience was sometimes astonishing. It connected us to a beautiful web of humanity to which we contributed beauty ourselves. I remember that in my class, many of us, on the wings of hope that we could actually have a career in mental health, took up roles as peer counselors and psychiatric techs with deep passion. Having something to live for is enormously healing in and of itself.
What I wasn’t prepared for in this new world of hope was that the mental health centers where many new graduates landed in menial positions were mired in stigmatizing attitudes. I didn’t expect to run a clinic, but I didn’t expect a sheltered workshop either. Many were given token positions where we were pulled out to display a clinic’s progressiveness in hiring “one of them,” but put on the shelf in terms of meaningful function the rest of the time.
I remember one very revealing lunch when my new supervisor introduced me as a student in a work-study college program to a case manager colleague. The colleague went on to regale the lunch table with bigoted jokes about bipolar clients. It was like a comedy routine, and I could tell the table was used to joining in the laughter. She’d just won the agency’s case manager of the year award and was in high spirits, displaying her utter contempt for the clients she considered herself the savior of. My supervisor was sending dagger looks at her, and it appeared even tried to kick her under the table because her friend didn’t realize I was one of the “others.” I thought: if those clients that helped you get voted case manager of the year had any clue what you really thought about them, they’d never come back.
This experience fueled my desire to get a master’s degree and start working to change the internal bigotry of mental health which I saw so frequently. I became a public speaker to inspire both fellow consumers and mental health professionals that recovery was possible and likely, and that hope was a requirement. I used the term “the bigotry of low expectations” to indicate a failure of the therapy system that continuously underestimated our ability to contribute to the world and recover a life that we felt was worth living.
After several years of living as a recovery poster child doing work which I rarely got paid for, or if I did it was token, I began to see how much my hard work advanced the careers of the “therapist saviors” while doing nothing for my career but pigeonholing me. People were still afraid of a mental patient whether we called ourselves a former one or a survivor or a consumer. I saw it in their faces, I felt it in their exclusion and it inspired me to quit speaking publicly about my life as a consumer.
It also inspired me to dig into college as if my life depended on it and graduate with a BA in the top five percent of my class. I also got into graduate school in the management sector with a disability scholarship, having stated in my entrance essay that it was time for people with disabilities to not only sit at the policy table but make the policy about our own lives.
My graduate school liked the idea that diversity included those with mental health disabilities. One of my professors, a very accomplished and respected man, took me aside after class one day and said these life-changing words. Holding his thumb an inch away from his index finger he said, “Someday, I hope you see yourself as this much a person with a disability,” and then he spread his arms wide apart and said, “and that you see yourself as this much a scholar, because that is how I see you.” I thanked him, wandered into the woods near the campus, lay on the ground and wept with heaving sobs. I was born that day; those sobs were the sound of a birth.
I began to see myself as I actually was: a researcher, a scholar, seriously and passionately in love with learning. My mind exploded the day I was born into this new identity — a true identity, not an insurance code by which someone could make money off my label. Yet even then I was still drugged to the gills and laboring under the impacts of a label, disabled in fact by the cure.
Eventually I graduated, and I know that my story changed lives along the way in that journey. But I also learned by reading the cues of the world around me that the less anyone knew about my past, the more seriously I was taken as a legitimate scholar. I began to apply for work, hiding the fact that I had a certificate from a professional program called “Consumer to Provider.” I knew it didn’t matter how capable or smart or ethical or hard-working you were if “consumer” was attached to you — you would get paid less and have very limited career opportunities.
Finally, after years of dreaming and working I got a job in state mental health, the policy arena I had long hoped to get involved with. I had a degree with an emphasis on government structure and policy formation so I knew my way around bill passage and measuring impacts, and I’d done volunteer lobbying work. Consumers so often can least afford to volunteer yet are expected to. I remember being at a county meeting for mental health services when a discussion occurred about the possibility of hiring some consumers — to this, a clinical director with a fat salary replied, “We can’t afford to pay them, they can volunteer.”
Later, I explained to a director of our local Veterans Affairs that the absence of consumers in mental health services and policy tables is like a VA with no veterans. Our absence in meaningful, contributing roles to guide and shape policy just illustrates how deep the bigotry is. Meanwhile, we watch funds get directed toward building programs that any consumer with lived experience could explain are a waste of resources. The people that know aren’t invited to share what they know, and if they were, would most likely be humored and dismissed.
Consumer panels where some policymaker gives token ear with a whiteboard and markers may show how good they are to “listen to the people,” but when push comes to shove they still do whatever they want to do. I remember a Native American friend explaining his own pursuit of a master’s in order to be an advocate at policy levels for the tribe. He said: “We get some white dude running our mental health program. He’s had a savior complex from the beginning, dismissed our local knowledge and our own awareness of what we need, dehumanized us, and run the program excluding us for 30 years. He then gets to retire on money that the tribe needs, and gets a plaque commending his greatness.” We had a keen understanding of each other and the fight for sovereignty from entities that diminished the humanity of those they were supposedly rescuing.
At the pinnacle of my career, my first day at the state job coincided with the staff Christmas party and the day when my predecessor was retiring. By then I’d had experience as a case manager, as a public speaker, in clubhouses and various recovery programs serving the public. She stood up to introduce me as the new staff person. She could have told them I came in with unique experience and a master’s in policy at the top of my class. Instead, she prefaced my introduction thusly: “It has long been a dream of mine to have actual consumers working at mental health, and so today a dream is fulfilled and we have hired a consumer.”
Then she had me stand up, and she informed the entire staff about my mental health history rather than my qualifications as a professional who had earned the right to be there. She knew about my history because she’d heard me speak in a small venue about recovery years before. She didn’t ask me if she could share my past. My heart sank to my feet, my face was red and I was horrified because it was my personal policy to keep my history to myself. After years of experiencing the repercussions of what it means professionally to be the identified consumer in a workplace serving consumers, I wasn’t about to tell because it is career suicide. Thus I began my first day of work under a cloud of despair.
They’d hired another consumer shortly before hiring me, but she was so flagrantly “consumer” that, as she explained it, “I pimped out my diagnoses to get this position.” The only problem with doing that was that she was a token, completely unprepared to understand policy or her place in helping shape it. She had no mentors, and she’d relapsed into substance abuse with such wild mood swings as to become completely disastrous in the workplace. Here I saw the bigotry in its reverse form. They expected that if you hired consumers you were going to get this sort of thing: people melting down, and scandalous, unprofessional workplace behavior that they put up with for years because “she’s a consumer.”
Meanwhile I went to the opposite extreme, being uber responsible and trying to work extra hard to pave the way for other consumer hires, sometimes doing the work of three people. It was lonely trying to prove I was sane enough to work well. I didn’t get invited for shared lunches, people walked past me into their cliques. I was told to not even make eye contact with the director of the Mental Health Division and would walk with head down in fear of his well-known rage attacks.
The good old boys bent over backwards strengthening their power base and making sure that the two consumers were excluded from anything that impacted our lives. Those policy meetings were conducted by people with zero education in policy but with perhaps a master’s in education. They were clueless about long term impacts of their decisions on the lives of people they neither knew or understood, while we had our fingers on the pulse of what the consumer public actually wanted and needed from the state. It was unspeakably frustrating.
The consumer appointed as my supervisor was drunk on having power for the first time in her life. She used her considerable energy to delegitimize me in the workplace because she feared that the recognition I received illustrated the fact that she was not actually doing her job. Sabotage, theatrics and lies were falling like grenades. I was wearied by the tremendous dysfunction, both in those supposedly normal people in that toxic workplace and the other consumer that was creating a workplace hell. I was able to successfully request a change of bosses, but knew I would be labeled a problem child for making waves.
At that point I’d given up any notion of having policy impacts and simply hoped to have a job, but as my health fell apart from the stress of it all, I gave up my job amidst clear evidence of discriminatory policies. EEOC accepted a complaint, but by that juncture I’d landed in a homeless shelter because of my job loss.
Unfortunately, I didn’t learn the lesson about the negative repercussions of a consumer label well enough until my last job in mental health four years ago. I got hired as a case manager at a drop-in center. I was liked by clients because I really understood them, and I was liked by staff because I was so grateful for my job and a team player. They had no idea about my consumer past, and because of that the young staff were more relaxed about expressing bigotry toward people with mental illness. I remember the 21-year-old psychology graduate explaining to me that I was too trusting of mentally ill homeless people because “they are ALL manipulators.”
After months of sadly watching young case managers on ego trips in a culture where making fun of clients was part of the ethos, clients began to seek me out more than other staff. A client asked me why I seemed to “get them” so well, and I said “I’ve been there.” Word that “she’s one of us” got around to clients, and then to staff, which made me “one of them” to the wanna-be therapists in that drop-in center. Two weeks later I was invited to my manager’s office, where two weeks previous he’d told me I was an exemplary employee. I suspected nothing, but as I opened his door and saw the director of HR sitting pensively by his desk I got nervous.
He said, “You can go get your things, you don’t fit here with us.” I asked “What did I do?” to which HR replied, “We are an at-will employer which means we can dismiss you at will without explanation.” I pressed for an explanation. I was just supposed to buy “you don’t fit in” when before I was the identified consumer, I did fit in? Staff was told that my dismissal was all highly confidential and instructed not to speak to me. I was effectively banished and became a pariah.
I spent some time seriously depressed about what happened at that workplace, and it was some solace that the program later shut down (apparently, when you treat the people you are supposed to serve like they are subhuman a program doesn’t fly). I remained devastated and impoverished nonetheless. I’m wiser now about how ruinous it is to be a “consumer” in a consumer-serving agency, whether they talk the talk about recovery or not. But I also decided I never wanted to work in, around, or in the neighborhood of anything that had to do with mental health ever again.
After years of growing desperation in unemployed destitution I landed a job. My new job has absolutely nothing to do with mental health. My relief about this is enormous.
No one at work will ever know that I am or was ever called a “consumer.” They will never know of my sojourn in the system, my brokenness there, my years as the poster child that left my career in ruins. My new work pays around minimum wage for my area, but I don’t care, I’m so grateful to have work at all. It’s customer service and I don’t try to change the world, or innovate, or think or work harder than others or put in overtime. I show up, do my best and I leave. Hopefully I’ve been kind to people and professional.
Recently, an old program director of the Consumer to Provider program posted on my Facebook that he was thinking fondly of me and the program. I wrote him back and tried to explain that I have a new life now and no one knows about my consumer history. Then I realized that I can’t explain this. Those heroes of the recovery movement who had nothing to lose by exposing our history profited from our willingness to spill our guts and be vulnerable to a world that was afraid of us.
As I look back at the programs I was the dog and pony show for, the “inspiring story of courage and hope” because of their program, I think about what I sacrificed to make them look good. My privacy was given up, the most shameful things in my life were paraded for public consumption and I was patted on the back for my courage while they collected the dough to fund their jobs at my expense.
This is the problem with being a consumer — we get consumed. I use the illustration of the chicken and the pig when I talk to other consumers about the value of our stories. A chicken wants a picnic and says to the pig she is traveling with, “Let us have a picnic; I’ll contribute the eggs, you contribute the bacon.” The pig replies, “That is an offering for you, it’s a sacrifice for me.”
I’ve been the bacon at far too many mental health picnics. Someone’s salary gets paid, someone’s program gets funded, someone’s career gets enhanced, someone gets accolades for being so altruistic and such a great savior — and me, what do I get? Exposed, laid bare, and isolated. People are still scared to be friends with consumers, no matter how compelling your story about recovery. If they go to coffee with you they are slumming, but real friendship isn’t going to happen when you so solidly establish that you are the other.
The joy of being normal at a workplace where I’m just one of the minimum wage clerks putting in my time and enjoying camaraderie is the greatest thing that ever happened to me. If there is another consumer in hiding there, I wouldn’t out them because it would change the work dynamic. I wouldn’t out myself either in the name of eliminating stigma. I’ve beaten that horse to death.
As for my former mentor who outed me on Facebook, I unfriended him. I did this because if he doesn’t understand the impacts of being identified as a so-called “consumer,” he didn’t learn much from the sacrifices of identity and career that so many of us made to make his program get funds and recognition. He has retired well — I’m still living in poverty despite my hard-earned education. I will work until my dying day paying for my education at minimum wage, and be grateful to do so as long as no one ever calls me a consumer again. I remain grateful for a job far, far away from mental health where I have found my real identity as a human being.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.