Psycho, patient, person: Perspectives on being labelled mentally ill


So cliché to say what's in a name. If you get to call me Helen and I have to call you Dr. Hook, there's a built-in power imbalance. That's pretty standard stuff. If we are patients first and even worse, diagnoses - the schizo in 3B, the junkie in room 229, how can we hope to be seen as people with a chance for real recovery and a full life?

What people call us, and even more importantly, what we call ourselves, is a huge issue - a constant struggle and a shifting sand. When clinicians, family, my support network and I see me as Helen first, it gives me strength because my own identity remains central. If I'm a "consumer/survivor" of the mental health system, it means that I have choices, that I'm an active participant in my treatment.

Contrast this with the passive images conjured up when you call me a "patient." I wait to be told what I should do, where I should go. The term "client" has been in vogue for several years, but it makes me think of my customers when I used to sell advertising. "Ex-psych" ignores my reality that the demons keep coming back. Some people use "psych survivor" because of the negative experiences they've had. I've had some bad experiences, but not all bad, so I hesitate to use that term. But you don't know how many calls I get at the Consumer/ Survivor Information Resource Centre of Toronto from people wanting help for broken toasters or other consumer-type problems!

I've recently come across the term C/S/X for consumer/survivor/ex-psych. It's a really short form that identifies who the person is talking about, but for me, it takes out all the personhood. I don't have the answers.

Helen Hook is co-ordinator of the Consumer/Survivor Information Resource Centre of Toronto.

Along with many other former mental patients, "consumer/ survivor" would be my umpteenth label (had I accepted it). I have been diagnosed bipolar, seasonal affective disordered, clinically depressed, hypo-manic, borderline personality disordered, and, they tell me, I have an organic brain injury.

Imagine introducing me at a cocktail party: "This is Sue. She's a 'consumer/survivor.'" Suddenly, I'm written off everyone's A-, B- and C-lists. My phone won't ring for months. Let's be honest. Being next to a mental patient gives most people the willies. "Consumer/survivor" is just a disguise word for mental patient. I've had people stop talking to me and move away when I've come out of the closet about my mental illness.
I wish people would stop seeing us as monsters that lurk in the basement waiting until bedtime to attack and kill the entire family. Maybe this is why some folks are embracing the term "consumer/survivor" - it sounds so "unmonster-like." But not only does "consumer/survivor" suck; it totally lacks sex appeal. And I happen to be approaching that age when you desperately want to appear, sound and be sex appeal incarnate.

I believe we have to all remain individuals (you know, Sam, Trudy, Margaret and so on) and not be lumped together as "the anything." Labelling us limits our opportunities in all aspects of life. We need assistance, not barriers.

You think I'm obsessed about society's penchant for classifying degrees of normalcy? Surprised that my spiritual side cries out not to be separated from the rest of the herd? Scoff if you want, but mental patients were on no one's wish lists not so long ago in Nazi Germany. And I've heard of mental patient bashing in my lifetime.

Please don't call me a "consumer/survivor." Just call me Sue.

Sue Goodwin is a Toronto-based writer and artist.

Whatever differences exist between psychiatric survivors and mental health consumers, our common experiences in the cracks of the psychiatric system may cement our identities and visions. During Mad Pride Week, for example, consumers and survivors re-uptake our strengths and abilities as resilient people. I'm an activist and advocate, working for a decade or more with people who experience the psychiatric system, and I've seen a lot of disagreement about psychiatry. Consumers and survivors hold varied, sometimes overlapping, perspectives on behaviour and how to deal with it, but these differences do not outsize our common experiences. For example, people in our community help each other despite relentless poverty, sometimes mocking the prejudice openly shown to us. Over successive generations in asylums, we've developed a culture of assistance and acknowledgement. Still other experiences show how institutions responding to our emotional lives may actually cause increased isolation, deprivation and even death. Tragically, such experiences of abuse are often occluded by professional and family voices seeking solutions to their own concerns.

Nevertheless, everyone can recover consumer and survivor voices during Mad Pride, held every year on July 14, the day of the storming of the Bastille, in cities around the world. I attended Pride 2005 and loved it. I was struck by the continued presence of both survivors and consumers. A survivor once asked me, "What is there for us to be proud of?" We are proud of our resilience in the face of crushing social contempt and "therapeutic" distancing. We are proud of our surviving abuses that continue in spite of revolving and relapsed systemic reforms. We are proud of our ability to engage and appreciate social differences that others find grotesque or alarming. Most importantly, we are proud of being who we are, despite what we've been told about ourselves. Consumers and survivors continue to rise from the ashes.

Erick Fabris was co-ordinator for the former Queen Street Patients Council.

CrossCurrent, Aug. 2005