No Holding Back

By Anna Quon

“Hi, my name is Anna Quon...and I’m a mental health consumer.”

I don’t really start most conversations like that. It’s not what people
expect or want to hear when they meet me for the first time – at a writers’
conference, a job interview or even a disability-related event. And it’s not something I would have dreamed of saying 10 years ago, to anyone, anywhere.

But today there are times and places where it’s appropriate, even necessary
and beneficial, to make it known that I am indeed a consumer of mental health
services; or even more specifically, that I’ve been mentally ill and required hospitalizations in the past for depressive and psychotic episodes, and I take medication to avoid them. That said, I can understand why, for a person with an
invisible disability, self-identifying might be the last thing he or she wants to do.

I was depressed a long time before my first half-hearted suicide attempt at the age of 22. My psychiatrist was going away and decided it would be best if I was admitted to hospital, and though I didn’t believe I needed it, I went. I was
frightened about the kind of people I’d find there, even more frightened about
being lumped in with them as a “crazy person” – and I did my best to set myself
apart from them. But it took two months and antipsychotic medication to make me well enough to leave hospital.

And it took years after that, and several more hospitalizations, for me to
believe that I was indeed a person who had a mental health disability that
required treatment with medication. I didn’t want to believe that essential fact
because of the prejudice I had, despite my own personal experience, against people with mental health problems.

The next big step after accepting myself as a mental health consumer was
self-identifying to other people. Though I’d been doing it selectively, and with
reluctance, for years, I hadn’t embraced self-identifying as a tool for self-empowerment and change as I do now.

The moment I realized that being a mental health consumer wasn’t a jail sentence, an automatic turn-off or something to be ashamed of was the moment
that I realized I could live well in spite of it, talk about it, even laugh about it. And being comfortable enough with my disability that I didn’t have to hide it from everyone all the time was a weight off my shoulders, a very freeing thing.

“Coming out” as a mental health consumer beyond my circle of family, select
friends, and professionals whose job it was to help people like me was nevertheless a scary prospect that took a deliberate decision on my part.

I tried it out first where I thought I’d be most accepted – among people with disabilities. And although I wasn’t shunned, I sometimes felt out of place. People with disabilities, after all, may also have preconceived notions about mental health consumers. They may sometimes use illconsidered expressions like “nuts” or “psycho” in the course of a conversation. Perhaps most painfully, they do not always seem open to talking about my particular disability – maybe because of their own discomfort, or their perception of mine.

Usually, though, I feel quite at home in the disability community, and I try to
make it known that I am a mental health consumer. At cross-disability events this can be especially important because I want to encourage inclusiveness, for me and others like me. What I really want is to be recognized for the person I am, including my mental health disability.

It can all start with the way you introduce yourself. When doing the round of introductions at disability-related focus groups or larger venues, I let people know my name and that I’m both a mental health consumer and a freelance writer. Others who wish to self-identify this way might talk about organizations they’re affiliated with, volunteer work they do, employment they have or hobbies they enjoy. This way people know you’re not a particular disability but a person, with many different interests.

When I worked as volunteer coordinator for the local Independent Living
Resource Centre, I made sure volunteers and staff knew I was a mental health consumer – partly to make sure consumer-volunteers were aware that I was “one of
them,” and partly to make everyone aware that my type of disability did not
exclude me from holding such a position.

I recently introduced myself as a mental health consumer at a focus group on
disability and community health indicators because I thought it was important
for the facilitators to know where I was coming from. I also believe that every
time someone with a mental health disorder is open about their disability, it
helps to diminish the silence around, and stigma attached to, mental illness.

It is a good idea to consider how much about your disability you want to share before getting to an event, as you will have only a little time to think about
it once you’re there. Preparing will also make you more comfortable doing it.

The trick to self-identifying, I think, is to have confidence in yourself, not to be defensive and not to assume you know how someone will react to your
revealing your disability. Some mental preparation beforehand can make those
things come to you more easily.

That said, be prepared for people to treat you as an ambassador of your particular disability group. That can happen if there are few self-declared persons with your particular invisible disability among people with or without disabilities. If you want to make it clear that you are an individual
and not representative of people with your disability, say so. Use phrases
such as, “I can’t speak for all people with such and such a disability, but I think...” and, “Not all people with such and such a disability would agree with me, but...”

Chances are that you will wish to be seen both as an individual and as a
spokesperson for your particular disability group, if only to be able to educate
others about your disability. Be honest with yourself about how much you want to reveal, and realize that you are not compelled to either tell anyone or keep quiet about your disability.

Self-identifying outside of the disability community might seem riskier, but in
my experience, many people are curious and open to talking about disability, given the chance to do so. They’re not likely to be comfortable or receptive to a litany of complaints, but they are interested in the day-to-day experience of disability, and in being able to put a face to that experience. Keeping your sense of humour, offering objective information, and trying not to
take offense even to awkward questions will serve you well when self-identifying.

One thing I still find difficult to do is to confront people, especially relative strangers, when they express negative views of people with mental health disabilities or when they use language that enforces stereotypes. But I don’t mind speaking about my disability – when I think people want to listen. In fact, I enjoy it! I find it endlessly fascinating that my mind can bend reality out of shape and send me to hell and back if I don’t rein it in with medication and healthy habits.

What gives me confidence in sharing about my disability is that I have made a fulfilling life for myself in spite of it. That’s something I rejoice in and want people to know about. And I acknowledge that it is easier for me to be open
about my disability because of my comfort with myself and my life than if I was
still struggling with it every day.

I have written about having a mental health disability and being a patient in a
mental hospital for my local paper, where I spelled out in black and white some of the symptoms of my illness, and the way I viewed myself and other mental health consumers. I was explicit about my hallucinations and delusions, and my mixed feelings about belonging to the “club” of the mentally ill. I wrote about being stopped in my tracks when, despite their mental health disabilities, people I had thought of as incapacitated and bizarre showed me unexpected empathy and generosity. In writing that piece I had hoped that people would relate to the journey I still travel from internalizing society’s prejudices
against mental health consumers to a place where I can say with pride that,
“yes, I am a mental health consumer, but also so much more than that.”

Although my editor at the paper was concerned about the negative reactions I
might encounter for sharing my story, I heard only positive feedback – from people with mental health disabilities, their families and professionals in the field of mental health care.

Not so for Jen Powley, now the acting provincial coordinator for the Nova
Scotia League for Equal Opportunity, who wrote a series of articles about her
eating disorder for another local paper. Although she did receive much positive
feedback, she also encountered negative responses, which she describes as “crushing” and “devastating.”

Powley did not start writing her series of articles with the aim of effecting social change. It was her frustrations with the difficulty she was having getting treatment for her disorder, and the need to feel like she was doing something to help herself, that spurred her. When people began telling her about their sister or friend with an eating disorder, she says, “then I understood it wasn’t just me.”

Powley says it’s important to know what you hope to achieve by self-identifying,
and to be selective about your audience. For example, if it’s support you’re looking for, make sure you choose a supportive audience. Writing about your experience of disability has a certain degree of anonymity, she acknowledges,
while attaching your face and voice to your story may seem riskier.

Powley doesn’t think people with disabilities should self-identify simply
because it’s the “right thing” to do. “I think it’s a personal decision,” she says, and one should weigh the pros and cons. She acknowledges that self-identifying may have helped her career in disability-related work, but it’s not something she would share with just anyone. Nevertheless, she says, “I was doing what so many people before me feared to do... I found it very empowering.”

(Anna Quon is a freelance writer living in Dartmouth, Nova Scotia.)

This article series is funded by the Government of Canada’s Social Development
Partnership Program. The opinions and interpretations in this article are those of the author and do not necessarily reflect those of the Government of Canada.