Tuesday, January 14, 2014

You Only Fear What You Don't Know

I presented a paper this week on research that was done in a region in South Africa and the way care-givers have managed to cope after community members with chronic mental illness were deinstitutionalized after apartheid ended in 1996.  The paper focused a lot on the stigma that exists in South Africa surrounding mental illness.  As I read the data and the research in preparation for my presentation, I was struck by the prevalence of stigma there, but even more so, how many similarities there are right here in Canada in 2014.  Stigma doesn't only align itself with mental illness in the developing world.  It makes its home right here.

As our class was discussing the work and the research, one of my classmates honestly shared about how ill-prepared she felt in working with those with serious mental illness.   She wasn't alone.  So many people have never interacted with someone with a serious mental illness.  Or maybe they just don't know that they have.

I don't feel like that.

For most of my childhood, my mom worked as a nurses aid at the mental health centre in the small town I grew up in.  She worked a variety of shifts, which meant that sometimes I was home in the evening or on weekends without her and didn't have a whole lot to do.  Sometimes I'd ride my bike over to the Centre (aren't small towns beautiful?), hop off, and ring the big door bell at the front of the building.  The security was tight.  There were several doors to get through in the locked facility and getting in or out didn't come easily.  After a few minutes my mom or another staff member would come to the front door to see who had arrived, and I would enter through the big glass doors.

I don't ever remember being afraid.

I was little,   maybe six or seven, when I'd start coming over on my own.  The centre was an inpatient facility which provided care and community for the most chronic and severe mentally ill in the region.  I would walk down the big hallways, stopping occasionally to be introduced and stop to talk to some of the patients.    Some patients were on significant amounts of medication and were slumped in chairs and drooling.  I wasn't afraid.  Some were talking to themselves, engaged in delusions and their own reality.  I didn't feel threatened.  Others sat and cried when I'd come around.  I remember taking their hands sometimes - especially the older patients who looked so weary, so small, and so defeated.  These were women and men from all walks of life; all ages, all socio-economic levels, all levels of education, and all with their own hopes and dreams... none of which included sitting in vinyl chair in a mental hospital.

I made friends there, because my mom had.  She loved that job, and she was good at it.  She saw the value in all of them and cared enough to learn their stories.  I learned to do the same.  Over the years, some of the patients never left.  Sometimes I didn't see them when I came for a walk and a visit because they were locked up in  the secure wing because it wasn't safe for them or anyone else not to be.  I heard those stories, and I connected them with the people I knew.

And I wasn't afraid.

Quite a few years later I was a young University student living in Winnipeg for the first time.  I was invited over to share supper at my friend Jackie's apartment that she shared with her friend.  I first met Jackie when she was an inpatient at the mental health centre.  She was one who was heavily medicated, sedated, and unable to find her way out.  But now she had, and she was living on her own for the first time, making a life for herself.  She told me some of her story of what being a mental health consumer was like.  How hard she had to advocate for herself and fight for support, understanding, and adequate care.  I told her about being in school for the first time; boys I liked, friends I'd made, and courses I was taking.  Sometimes she heard voices.  Sometimes they got too loud.

But I was never afraid.

I was sitting with the girls at a restaurant last Sunday afternoon for a quick lunch.  In walked a couple who were obviously struggling with mental health issues.  I couldn't take my eyes off of them.    I got that same familiar feeling I've had all my life - this overwhelmed sense of the pain that they carried.  I kept looking at them - not because I was afraid or uncomfortable, but because I couldn't stop wondering what their story was, what their diagnosis had been, which meds they were on, how they were coping...

Stigma exists and then grows where there are assumptions, misunderstanding and fear.  I wish we could all walk into a building full of people with mental illness as six-year-olds and learn to navigate it all over again.

Then we wouldn't be afraid.


  1. I remember walking through the centre when I went to visit my Grandma. I was never afraid, I just had many questions about the centre and the patients there. Unfortunatley my questions were never answered. I guess living in the small town it was shameful to talk about it. We just dealt with it like it was no big deal.....however later on in life it was a big deal and wish we could have been more educated in that subject.... I personally thank your Mom for the wonderful care she gave all those patients, probably included my Grandma. Thank you also for your wise words Karla!

  2. I have a childhood friend who spent time at the centre dealing with a severe eating disorder when we were teenagers. I visited her there but don't think I really "got it" at the time; what she was going through, etc.

  3. I just took a 'train the trainer' course for a mental health course I will be teaching at work, regarding mental health in the workplace. Not surprising, stigma and self-stigma is the biggest barrier to getting treatment for mental health issues, and mild issues can turn into severe ones, left untreated. Love your understanding.