"An almost schizophrenic nature"

This morning, I turned on The Current on CBC Radio to hear guest Peter MacKay, the former Canadian Minister of Foreign Affairs, talking about Donald Trump's post-G7 attacks on Justin Trudeau. MacKay made some good points about Canada-US relations, and included some context on past enmity between presidents and prime ministers. I was impressed.

Then, asked to explain Trump's behaviour, MacKay said this:

I don't think there is any explaining it. This is a product of his combative personality. He prides himself on driving a hard bargain... This is not something you can analyze and come up with any clear answer. There seems to be an almost schizophrenic nature when it comes to what he says one minute and what he says the next.

There was no negative intention behind that turn of phrase. It just slid out naturally. Just like comedian Gad Elmaleh probably meant no harm during the stand-up bit in his Netflix special when he made a joke about being able to get multiple reference signatures from a relative because he has schizophrenia.

But hearing that sentence from Peter MacKay, I felt deflated. Discouraged. It is (or should have been) common knowledge for decades that people with schizophrenia don't have multiple personalities. And calling atrocious behaviour by the President of the United States -- or anyone else "schizophrenic" is not helpful. (As an aside, if you want to feel even more deflated do an image search for "schizophrenia." It's not pretty.)

I am writing a hybrid memoir (part memoir, part literary journalism) about family and mental illness, and one of the things I've thought about is whether there is any other illness that carries as much of a burden as schizophrenia. I know very few people who openly talk about having schizophrenia. Some hide their mental illness altogether, for fear of the consequences of friends or co-workers finding out about it. Some use "psychosis" as a more general term to describe their diagnosis. Strictly speaking, psychosis represents a set of symptoms, not a disorder in itself, but it has come to be used as a blanket term covering some forms of schizophrenia and other psychotic disorders. Some have talked publicly about their diagnosis, but then went back into the closet because of the treatment they received. 

I have heard of psychiatrists who sidestep the issue of diagnosis altogether, especially in the early months of treatment, because it's not relevant to their patients' recovery. And when they do use the word "schizophrenia" it can have a negative impact on their patients. It's a heavy word. Loaded. An incurable illness. For many years, even medical professionals had very little hope people with schizophrenia could lead happy, fulfilling lives.. 

That's changed, now that we have a new understanding of schizophrenia, new medications for treatment, and an understanding of how crucial early intervention and relapse prevention can be. 

But much of society still has to catch up.

In Japan, psychiatrists no longer use schizophrenia as a diagnosis. Instead, they call it "Togo Shitcho Sho" or "integration disorder,." This paper outlines reasons for the change, but notes that one of the most important was

 the deep-rooted negative image of schizophrenia, in part related to the long-term inhumane treatment of most people with the disorder in the past.

Since the change, back in 2002, 

86% of [psychiatrists] found the new term easier to inform patients of the diagnosis as well as to explain the concept of the disorder. Eighty-two percent of them found the new term more suitable to obtain consent to treatment from patients, useful to improve treatment compliance, effective to reduce stigma, and promising for achievement of social integration.

That's the power of changing a word - and it points to why we need to stop tossing out "schizophrenic" to make jokes or to casually describe unstable behaviour.

If you want to learn more, the American Psychiatric Association has a good, concise explanation of schizophrenia here.

Madness and Pride

 Sign at the 2017 Halifax Mad Hatter Tea Party

Sign at the 2017 Halifax Mad Hatter Tea Party

I have a feature in the April 2017 issue of Halifax Magazine on the nascent Mad Pride movement in Halifax. You can read it here

 As you can imagine, the label of "mental illness" is a complicated one. I have known people for whom a diagnosis of mental illness comes as a relief -- finally, they have a framework that helps them understand themselves and their experiences. Other people may reject that label altogether. And some embrace it.

In my Halifax Magazine story on the Mad Hatter Tea Party, I have a few quotes from Anna Quon, who describes herself as a "mixed-race middle-aged Mad Woman." She is the author of several novels and books of poetry, and also creates beautiful visual art. (She often donates the proceeds from her artwork to the Schizophrenia Society of Nova Scotia.)

She told me:

"Originally I had a lot of internalized stigma -- self-stigma -- and I didn’t want to talk about the fact that I'd been hospitalized and had problems with depression and some psychosis. And I didn’t want my dad to tell people who he thought might help me because they’d been through a similar situation. Even though I came from a family that was supportive, I had internalized stigma just by growing up in this world that has so much stigma about mental health.
"It was a personal journey to actually acknowledge who I am. I don’t have to hide it or pretend do be “normal” or pretend to be something that I’m not. I feel comfortable with it so I’m willing to be out there about being mad to a certain extent."

Think about the standard recovery narrative: your life falls apart, you are hospitalized, get diagnosed, get treatment, then start getting better. There are a few setbacks along the way, but eventually you are able to carry on with your life in a healthy, satisfying way.

Many people's lives line up with this narrative. But many don't. And while some people reject the notion of mental illness, others embrace it as a fundamental part of who they are.

Anna said she wouldn't have a career without her mental illness. After being hospitalized, and unable to find work, she started writing for the Dartmouth-based Ability Network. Then, she got a Canada Council grant "to do a memoir of madness in poetry -- so some of my art and work came about because of my mental health challenges." Not in spite of them.

Last summer, a family member asked if my partner and I wanted to go with him to the Mad Hatter Tea Party on the Halifax Common. It was an event organized by the Schizophrenia Society of Nova Scotia, and was inspired by the global Mad Pride movement. I had no idea what to expect. I certainly didn't think I'd be writing about it. I was just planning to enjoy a sunny afternoon on the Common.

The most striking thing about the Mad Hatter Tea Party is that it was FUN. Sure, there was a broader political purpose, but it was also just flat-out fun: crazy (yes, crazy) hat-making,  gentle yoga classes, music, food, face-painting, and a general atmosphere of celebration. "Are you here to cover this?" Anna asked, when she saw me there. (We had previously met a couple of times.)  "No," I said. "I'm just here for the event." 

Of course, I did wind up writing about it -- and about the underpinnings of mad pride, and why it has taken so long to come to Halifax. There's another tea party planned for next summer, and I'm hoping I'll be able to be there again.