In the mood for Mad Pride 2009...

Since I started writing "Coming Out Crazy" 15 months ago, I've been on the steepest learning curve of my life. 

At least twice a week I sit down here facing a blank screen on my trusty iMac to muse and investigate issues around mental health and wellness that matter deeply to me and I hope to you, too. Particularly Recovery. Plus any relevant news. These days, there's lots of it.

Your comments are my only barometer, my only way know if I'm plucking at a few of your psychic chords. I live for your reactions, to hear your voices, to learn more about you and this community we've created.

Today, I am launching a short series on Mad Pride, which means many different things to many different people. I believe that Mad Pride is analogous to Recovery because they both share one very crucial quality. Hope.

Perhaps you'll think about what Mad Pride means to you. If you want to know the truth, I'm glad to be mad. I know I'm not normal and I wouldn't want to be. I'd rather be Next to Normal. I think everyone is. No one's normal. 

Being different and proud of it affords me enormous freedom, though I've worked hard to get here. Now, thanks to my psychiatrist Dr. Bob and his brand of talking therapy, I don't ever have to dare to be different. I simply am different. I like being different. That's part of my madness. I'm fine with it.

Some of you don't like the term "mad" or "madness" but perhaps you'll change your mind by next week at this time.

Anyway, here goes. A few annotated highlights for the first day or two of Mad Pride Week in Toronto.

• Mayor David Miller has once again officially proclaimed next week, beginning this Monday, July 13 and ending on Sunday, July 19 to be Mad Pride Week 2009. 

Incidentally, according to a PsychCentral 2007 post on its World of Psychology blog, July is considered Mad Pride Month.

And for all the folks of MindFreedom International, Mad Pride is central to its ethos as a "movement that celebrates the human rights and spectacular culture of people considered very different by our society."

For this "non profit organization that unites 100 sponsors and affiliate grassroots groups with thousands of individual members to win human rights" and alternatives for people labelled with psychiatric diagnoses, Mad Pride is a constant campaign – one of many.

NOTE: This year, due to the City Worker Strike, many of Toronto's week long Mad Pride Week Activities will take place at the May Robinson Auditorium at 20 West Lodge Avenue. That's one block east of Landsdowne and one block north of Queen Street. 

This year, Mad Pride Toronto is up to the minute electronically.You can follow our local Mad Pride Toronto events by watching them on YouTube. Or read the Mad Pride Toronto Blog. Or by following on Facebook.

Mad Pride is a cultural festival of arts, entertainment and heritage activities. Several activities honour and commemorate the contributions of men and women who lived, worked, struggled and died in the former Toronto Hospital for the Insane which was located at 999 Queen Street West.

Here are a few events that intrigue me:

• At 6 p.m. on Monday, July 13, you won't want to miss Geoffrey Reaume's unique historical guided tour of The Patient Built Wall, constructed in 1860 by unpaid patient labourers in what was then known as the Provincial Lunatic Asylum. The Centre for Addiction and Mental Health (CAMH) now stands there. Patients lived and died building that wall and Reaume, author of the landmark history Remembrance of Patients Past – Patient Life at the Toronto Hospital for the Insane, 1870-1940 is well-acquainted with their stories. Soft-spoken, thoughtful and profoundly knowledgeable, Reaume teaches a course in Mad People's History at York University, where he is an Associate Professor. He is also co-founder of the Psychiatric Survivor Archives of Toronto.

• At 8:30 p.m. a Candlelight Memorial will take place at the wall.

• Tuesday, July 14, is Mad Pride Day globally. It's celebrated from the United Kingdom to the United States and Canada and from Australia and New Zealand to South Africa. Celebrations vary, but often Mad Pride is an opportunity to challenge mental health prejudices, discrimination and negative stereotyping by raising awareness through community activities and the arts. Music, theatre, poetry, art and literature can transcend so many barriers, especially the unnecessary ones perpetuated by societal and media ignorance and fear.

• It's no coincidence that July 14th is also Bastille Day, the French National Holiday marking the anniversary of the storming of this Paris prison in 1789 that started the French Revolution. It's a universal symbol of liberation and, according to Mindfreedom, "when the Bastille was stormed, two prisoners with psychiatric labels being detained there for that reason were freed."

(I wonder what those psychiatric labels were, back in 1789, before there were psychiatrists.)

• The Honourable David C. Onley, Lieutenant Governor of Ontario, Ontario Human Rights Chief Commissioner Barbara Hall and MPP Cheri Di Novo will be attending the Opening Ceremonies at 11 a.m. on Tuesday morning to kick off Mad Pride Day.

• Following that, a virtual variety show of entertainment, song, poetry and readings is planned.

• At 1 p.m., York University's Geoffrey Reaume will be back to present an intriguing, no doubt healing and historically provocative program called "Hugging Our History: Why Psychiatric Survivors Need to 'Own' our Mad Past." This is a one-hour presentation I'm going to try to see.

• Wednesday, July 15th is "Know Your Rights Day" and features a presentation by The Dream Team – consumer survivors who advocate for more safe, secure and affordable supportive housing for people living with mental health and addiction issues. 

Next week, I'll continue with my Mad Pride series and some surprising information about how Toronto has led the world in the Mad Pride Movement.

The original organizers of Toronto's first "Mad Pride Day" was almost called "Crazy Day" back in 1993. Instead, they decided to call their event Psychiatric Survivor Day." But I'll leave the rest of that story until next week.

Finally, to get yourself into a "Mad Pride" mood, why not download some utterly amazing interviews on Madness Radio – "Voices and Visions from Outside Mental Health." 

Have a peek.

More of that next week, too. Have a "Truly, Madly, Deeply" sensational weekend.

Hugs,

sln

Comments

[Katharine]

You know, I was musing about what Mad Pride means to me personally in early May in the following 2 blog posts: http://katharinec.tumblr.com/post/103954262/applying-harvey-milks-call-to-de-closet-to-the (Applying Harvey Milk's Call to De-Closet to the Struggle for the Civil and Human Rights of the Mentally Ill) and then http://katharinec.tumblr.com/post/103925803/why-some-mentally-ill-patients-are-rejecting-their which is some of my thoughts on the May 2nd Newsweek article on mad pride.

I'm not usually one to link to blog posts like that, hopefully it doesn't come across as overly self-promotioney, but it really reminded me of that.

Basically, I self-identify with the Mad Pride movement, but I don't think it means the same thing to me that it does to the next person and that it means to the next person what it does to someone else etc, as you touched on. To me, Mad Pride is about individual choice in treatment strategies, dignity for those who are afflicted, regardless of what words you use to describe the affliction, and also a belief in the importance of viewing mental illness (I'm comfortable using that term, some people aren't) as not entirely negative, as something with a silver lining not just for the individual, but for society as well. And it's also about "coming out" (hey, the name of your blog!!!) and that's where my comparison to Harvey Milk's call to homosexuals to de-closet comes in. I think it would behoove the Mad Pride/mental illness/whatever language one wants to use community to COME OUT! I think that while it is a personal decision, that overall it has benefits for the individual in terms of dealing with shame and self-hatred surrounding the formation of personal identity, and I think it benefits society, and also us as a group - how can political decisions that impact us be made with regard to the needs of our community if we are not visible, seen to be as regular and mundane as we are, as usually harmless as we are, as pervasive as we are, and also at times as fantastic as we are?

Thanks for writing about this. Keep up the great blogging! :-)

[Sandy Naiman]

Hi Katharine,

What a refreshing voice you have. Very provocative, fascinating.

I visited your blog and Twitter profile and poked around a bit before clicking onto your links in your comment above. Wanted to get a sense of you. Great blog and great writing. I share many of your ideas and perspectives on issues of mental health and wellbeing.

I don't view mental/emotional disorders/conditions/differences as all negative, either. Not at all! I think many of us are supremely sensitive and creative. We have “beautiful minds”. We may need a little extra tender love and care, but so do orchids!

I also agree with your interpretations of Mad Pride for the most part.

Interesting phrase, too – self-identify. I never use that phrase but it's one I'm going to consider. Let's see... I self-identify with feminism, but I have my own definition of feminism – there are so many – so I don't know if that will mean anything to anyone. Same goes for self-identifying with Recovery, because that term has millions of definitions, too. Both of these “classifications” are very individual.

I can't really think of how I would use the phrase “self-identify” very comfortably because I have my own definitions and interpretations of every group or movement I might self-identify with – I love diversity. Self-identifying seems to me to be just another way of labelling oneself, classifying oneself and that doesn’t work for me. I don’t like being classified. I’m me.

But, it if works for you, great.

I don’t entirely with MindFreedom's perspective on Mad Pride – or anything else for that matter. But, they have a big and busy website with lots of places to learn things. I’m just not as dogmatic about things as they are. I’m not angry, either. Anger is pretty toxic. I’m curious. I think you get further, in the “change the world” department or in any “social change” endeavour by being open to new ideas, willing to listen and learn and able to respectfully “agree to disagree.” (Thank you President Barack Obama for teaching me that!)

I’m not sure that’s the way Mindfreedom works, but I may be wrong. Their views on ECT, for example, even if it is voluntary, are very dogmatic. They are very dogmatic, generally. That’s just not my style. I find I learn more if I’m open to different people and ideas that differ from mine. How else do you learn new things?

Frankly, the less said about Mindfreedom, the better. That's why I tried to present a number of different approaches to Mad Pride in my post, if people care to click on all the different links.

I am not anti-medication – I take medication every day – nor am I anti-psychiatry, though God knows I could be. One's negligence cost me my only kidney and nearly killed me more than 17 years ago. But he was a bad apple and they're in every profession, in every walk of life. I do not believe in throwing out all of psychiatry because one nearly did me in. He's no longer practising clinical psychiatry. One reason, I believe, is that I filed an official complaint about him to the Royal College of Physicians and Surgeons so he wouldn't be negligent with anyone else and his contract was not renewed as head of psychiatry department at a teaching hospital. There were other reasons, I’m sure. He was very arrogant. One way to stop learning is to become arrogant.

He's into other things.

I am certainly critical of psychiatry, as it seems to be practised in North America these days. Skeptical. Watchful. I am very critical of Big Pharma. They're just greedy. I wish they couldn't advertise on television in the U.S. (Canada does not, by the way, but we get U.S. ads on the American networks we receive.)

This is a huge problem. Outlaw all those ads, and drug companies would be hobbled. Our culture would change around drugs use and pill popping just like it's changed around nicotine and cigarette smoking, since tobacco advertising is not longer legally allowed on TV or in print or on radio. Tobacco is a different industry, now. Nicotine is a killer drug.

The only other country in the world that allows TV advertising of pharmaceuticals is New Zealand.

This is a huge, enormous, fundamental and pernicious problem. Trust me!

Neuroscience, Psychopharmacology and Psychiatry are very different disciplines. I do believe that here, psychiatry is losing its footing for many reasons – cultural reasons.

How many people want to opt for years of psychotherapy when given the option of what appears to be a quick fix pill that will make them feel better, maybe. No one has time. I do. I make time to see my psychiatrist and because of this time is the most valuable investment in personal portfolio.

I believe I'm a healthier human being and not only a more emotionally stable one.

Also, I have always been "out"! Harvey Milks ideology is absolutely right. If everyone "came out..." with her/his particular brand of madness, then the whole world would probably prove to be mad and madness would become mundane.

How many people know, care or give a hoot about what someone's sexual orientation is today? Thanks to Gay Pride, not many. And few people would dare to say openly anything about it if they do. Sexual Orientation, like madness, is part of human experience. Personal, too.

Back to madness. I love my madness, just like I love who I am and I'm comfortable with that. Katharine, I'll be 61 in October. I'm changing all the time. I never sit still. Things I’ve written a year ago, I find myself not entirely comfortable with now. I’m always learning.

As for mental illness, I don't like the phrase.

Mental is a good word. All it means is “relating to the mind” but coupled with “illness” and its meaning changes.

A mental illness is not really analogous to a physical illness.

We don't talk about "physical illness" as in "I have physical illness."

We rarely say, “I have a physical illness,” which would be grammatically accurate.

Yet it's acceptable and common to hear people say, "I have mental illness."

This doesn't make sense to me. At least pluralize it. The DSM-IV and certainly new DSM-V list hundreds of different mental "disorders" – I word I prefer. Do people say, "I have mental disorder"? No. They might say, “I have a mental disorder.”

Print editors like short words. “Mental Illness” is shorter than “A Mental Illness” of “Mental Illnesses.”

Also, one sure way to put down people like us with psychiatric diagnoses is to put us all into one huge amorphous group. One elephant size group and then try to hide up under the carpet of a term like “mental illness.”

It isn’t easy to hide an elephant under the carpet. I’m a noise elephant, too!

Nor do I like the term "diseased mind" because no medical diagnostic tool exists that can find any solid, hard, discernible evidence of a mental disease. (No x-ray, scan, blood test, urinalysis, biopsy.) There’s no test for bipolar disorders (threw are many) or schizophrenias (also many) or depressions.

In fact, objectivity doesn’t exist in medicine. If it did, why would we have the option of getting a second opinion? Certainly, a broken leg, however, is easier to diagnose, I would think, than depression.

Mental Disorders are not Brain Diseases. They are not tumours, though brain tumours can cause people to behave in uncharacteristic ways. To act out. To not seem like themselves.

The medication I use, by the way, also is used to treat epilepsy – Tegretol is an anticonvulsant. Epilepsy is a neurological condition, but my unipolar mood disorder is not a neurological condition. It's an emotional condition, a psychiatric condition. Probably rooted in trauma and other things. I've not had any symptoms – i.e. I have not had a manic episode in more than 20 years.

I know myself well enough to prevent them! Sleep is my salvation! My secret prophylactic.

Here's my point after all this. And I must have my coffee.

Every human being on earth is unique. Special. Different. With their own individual perspectives, experiences, views of themselves and the world. They’re own psychology.

I celebrate these differences. They make life interesting. That doesn't mean I love every soul I know. I don't. But I celebrate the fact that everyone has the right to be whoever they want to be – as long as they don't hurt themselves or others.

Everyone deserves to make their own decisions about their lives. That's a dignified approach. That choice is a tangible signal of our innate dignity as individuals and every physician worth his M.D. knows that any "patient" knows how s/he feels "inside" better than any "outside" medical practitioner. That's why "taking a history" is critical in medicine. (But medical history taking has been telescoped, too. In my day, a psychiatric diagnosis took two months of weekly, hour-long appointments. That's roughly eight hours. And it still took psychiatrist 13 years to get it right.)

Today, psychiatrists take, on average, about 20-minutes, thanks to fee-for-service "universal" medical health care.

When it comes to mental/emotional health – there are many tools to choose from – not just pharmaceuticals.

We deserve to be given a chance to choose more than those. Too often, we're not. That's why I look outside North America to other countries, where more tools, more approaches, more choices are made widely available.

Anyway, this response to your excellent comment has gone on too long. I love your blog and I'm going to start subscribing. You're a voice that should be heard. I'm glad you included your links, so others can see what you’re up to – and… there's nothing wrong with a little self-promotion. I wish I was better at it and more comfortable with it, myself.

Thank you, Katharine. I am so impressed with your ideas and your passion. So inspired. I hope you'll come back, visit often and continue to add your empowering and perceptive voice to our dialogue and our community.

Hugs – (Every time I use that word now, I think I'm “Hugging my mad history” as well as signing off with affection!:-))

sln

[Sonia]

Hello Katharine, Sandy, and readers,

"as usually harmless as we are" ... The Hitchiker's Guide to the Galaxy thanks you! In this novel-made-to-movie, there is an electronic encyclopedia, "The Guide", on the cover of which are these two friendly words, "Don't Panic" ... That is how I see Mad Pride.

The madness of British humour (Black Adder, Monty Python, Benny Hill and The Goon Shows) seem to put in the mainstream mindscope the possibility of having fun with one's madness.

The North American versions (Jon Stewart, Madly off in all Directions, The Frantics, Saturday Night Live, and Bob & Doug McKenzie) add to the mix.

On a more personal level, I saw madness as a component of society, rather than something from which I was suffering. It was something I suffered to see in others. Seeing 'society' allow abuse of children and women, of minority groups, in the areas of domestic violence, incarceration, access to education and equity in employment - that was madness. Communities struggle with private issues (when is a spouse-to-spouse quarrel "family stuff" vs. "domestic violence"?) (when is depression "psychiatric" vs. a "natural" response to one's lived experience?)

My hope is that each public event may bring to the forefront, mainstream consciousness, as a result of which a valid social change may take place: madness is the seed of creativity, genius, innovation.

[Sandy Naiman]

Bravo Sonia,

How brilliantly said. Madness as a component of society, indeed. Not something to suffer from or be cured of or treated for.

Look at mental institutions. Now there's a mad concept, if ever there was one. Isolate people, starve them emotionally, drug them into submission, shut them away.

And it's equally mad to suddenly close them down, throw everyone out and offer no community support systems, no alternative housing, no compassionate care.

Thank you, Dr. Duncan Sinclair of Queen's University for that superb stroke of madness!

Treating people who are different as less than human and expecting people to conform to some arbitrary ideal – that's another societal madness.

Madness should be mainstream. Madness should be celebrated. Instead, behind too many closed doors and shuttered windows, abuse and ugliness resides and runs rampant. Too many people put on public faces and do too much pretending.

Honesty and Integrity need to be revived as real values to aspire to. Not appearances. Falsities.

End of rant. You touched a chord.

Often all our society's sheep haven't a spark of creativity or genius or innovation. That's why they're called sheep. All they know how to do is follow.

Leave the art and genius, the creativity and innovation to us, Soni. The John Nashes. The Vincent Van Goghs. The Beautiful Minds. The Mad Ones! ;-))

Thank you!

Hugs,
sln

[Laura K]

Katharine - I love your perspective! Not only because I share it...ever since I saw the Oscar winning 1984 documentary that's exactly how I viewed my mental illness. I need to share my experiences because only when people realize how many of us there are will there be fewer misconceptions about what it means to be mentally ill.

Another note, I personally don't mind the term mental illness for the following reason. If you had an ear infection, you wouldn't hesitate to go to the doctor to get it taken care of. Mostly because it hurts...a lot. How is that any different than a mental illness? Yet people suffer in silence without seeking remedy for years...I know I did. I have lived with depression for at least 10 years and am, at this point, in "remission", without medication but a really sensitive and understanding psychiatrist who never even pulled out the prescription pad.

I'm not scared or ashamed to share my experiences with anyone who will listen. I used to feel sorry for people who didn't feel good about themselves, myself included...but now, having gained the self-awareness of myself and my illness, I have to say I feel more sorry for people who never go through something like this. But now, to be honest, I feel more sorry for people who never do because they don't fully know what they have. It's the dark that makes the light seem that much brighter.