Category Archives: Stigma

Time to Relegate Anti-Stigma to the Garbage Heap – Part Two

By Dr David Laing Dawson

There is a moment for most of us sometime in second year University studying linguistics, humanities, philosophy, psychology when questions of truth, reality and delusions become quite interesting. Is there really a difference between the man who believes the CIA is watching him (assuming they are not) and the man who believes Jesus turned water into wine without the aid of grapes and fermentation.

Is what we call a delusion just a lived experience no different than a thousand other unfounded beliefs the rest of us live by? Is it just a social judgment by which we differentiate?

The answer is no. Though it may not be readily apparent to other than a family member or someone who has spent years treating schizophrenia.

First of all the delusion, the false belief of the schizophrenic is almost always tormenting: being watched, controlled, denigrated, persecuted. And when it is not that, when it endows the schizophrenic with a power to right these wrongs, it is dangerous.

And secondly, most clearly differentiating a delusion from an ordinary unfounded belief is the accompanying cognitive deficit.

This is not a cognitive deficit that shows up on an IQ test. This is rather a more subtle and complex social information processing deficit. It is a deficit in the ability to stay grounded in this social moment including having a governing awareness of the effect we are having on others and of the consequences of what we say and do. It is this deficit that differentiates the disheveled man ranting about God on the street corner and the Jehovah’s witness knocking politely on my door.

Schizophrenia is a brain illness for which we have effective treatment.

And as Marvin points out, stigma is not reduced by railing against it. When the subject of the stigma is a frightening illness, stigma is reduced by naming that illness, understanding that illness, and ensuring that it is treated.

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Time to Relegate Anti-Stigma to the Garbage Heap

By Marvin Ross

I am so terribly tired of all the effort and money spent on fighting the stigma of mental illness. I don’t really think it is that much of a problem. What is a problem is discrimination – the fact that mental illness does not get the health funding that it should when compared to other illnesses. There is a lack of beds, a lack of community supports, a lack of support for family caregivers and I could go on.

I feel a bit like Howard Beal did in the classic 1976 film written by the brilliant Paddy Chayevski and I am mad as hell. His famous line can be seen here

A couple of things have set me off. The first was the appointment to the Order of Canada of Professor Heather Stuart who holds the Bell Mental Health and Anti-Stigma Chair, the world’s first anti-stigma research chair at Queen’s University in Kingston, Ontario. I’ve met Heather, have corresponded with her a number of times, and years ago I backed her getting a grant from the Schizophrenia Society of Ontario to conduct a study of stigma by health professionals against those with schizophrenia so I’m pleased for her to win recognition. Sadly, her efforts to promote anti-stigma do not improve the treatment for anyone.

As an advocate in Kingston Ontario continually tells me, the streets of downtown Kingston are filled with ever increasing numbers of obviously untreated mentally ill. Maybe Heather should get off her endowed chair and try to get them some help.

The other event this week was told to me by a Toronto advocate who notified me of a bioethics lecture at the University of Toronto entitled Reflection on Mental Health Stigma, Narrative, and the Lived Experience of Schizophrenia (you have to activate Adobe Connect to see it). The presenter was a PhD candidate in philosophy at York University in Toronto.

To his credit, the lecturer admits the existence of anasognosia and that people with schizophrenia do have cognitive deficits. However, he suggests that many people fear those with schizophrenia. I think many of us do if they are not treated and are in active psychotic states. He does seem to suggest that doctors should accept the delusions that people have and not ignore their lived experiences. He also suggests that people are told that there is no recovery.

What he did not seem to differentiate between was treated versus untreated and that is crucial. It is true that recovery to a totally healthy state is not normally possible but many people can and do recover to live as reasonable lives as possible. And some don’t. That is the reality.

The notion that people fear those with schizophrenia and distance themselves needs to be qualified. Maybe some do but they are not in the majority. Those people will also fear and distance themselves from people diagnosed with cancer or some other serious and chronic ailment. They are not in the majority. Most people are sympathetic and many will tell you of relatives or friends who also suffer. Despite some tragic examples involving the police, the majority are incredibly sympathetic and understanding.

I remember one case years ago when a man with schizophrenia took off (as often happens) and the police found him miles away from his home. As he was over 21 and not declared incompetent, the police could not take him back to his family but the officer phoned his father 3 hours away and told him he would keep an eye on his son till the father got there. He did, provided cell phone updates and kept it up even when his shift ended so the family could be reunited.

When David Dawson was shooting his feature film on schizophrenia, Cutting For Stone, we needed a police cruiser in the middle of the night for one scene. Two cruisers showed up for us and one of the cops commented that if any group needed more exposure it was people with schizophrenia.They were happy to accommodate (available on Amazon for streaming) and I got a chance to ride in the front with the sirens blaring.

Many people with schizophrenia are willing to expose themselves to the public by telling their stories in books. Many of them I’ve published thanks to the willingness of people like Sandra Yuen MacKay, Erin Hawkes-Emiru, the late Dr Carolyn Dobbins, and Sakeena and Anika Francis. Others have done the same in books and blogs like Christina Bruni, The Unashamed Schizophrenic and others. Some have exposed themselves in documentaries like the ones in the film The Brush The Pen and Recovery directed by David Dawson (available on Amazon for streaming).

The same goes for those with bipolar disorder like Victoria Maxwell and many others including a new book called Mad Like Me. This one was originally submitted to me but I turned it down for a number of reasons. The author, however, did take some of my suggestions, rewrote it and had it published. Or, a book that I reviewed in these pages called Shatterdays Bipolar Lives

I often receive requests from people with schizophrenia offering to tell their stories as I did last night from a gentleman in California. His e-mail to me stated “I have been contemplating writing this manuscript for several years,and have decided to now ,because I feel there is no shame in having a mental illness, as it is no different than having a disease such as Epilepsy. I wrote this book to be in an advocate/activist position to be able to speak for those who cannot. If my book, my story, can help just one person, one family, it will have been more than worth the effort of writing it.”

I think it would be well worth it for mental health agencies to run writing workshops for people with mental illnesses.

But, let me circle back to the issue of stigma. Who in their right mind would not be fearful of a dishevelled ranting, untreated schizophrenic wandering down the street. I almost hit one the other day when he suddenly walked out into the traffic of a busy street impervious to the traffic.

The best solution to this stigma was offered by Dr Stuart’s partner, the psychiatrist Julio Arboleda-Flórez, He wrote:

The lesson to be drawn from these papers is simple: helping persons with mental illness to limit the possibilities that they may become violent, via proper and timely treatment and management of their symptoms and preventing social situations that might lead to contextual violence, could be the single most important way to combat the stigma that affects all those with mental illness. While most myths about mental illness can be traced to prejudice and ignorance of the condition, enlightened knowledge does not necessarily translate into less stigma unless both the tangible and symbolic threats that mental illness poses are also eradicated. This can only be done through better education of the public and of mental health service consumers about the facts of mental illness and violence, together with consistent and appropriate treatment to prevent violent reactions. Good medication management should also aim to decrease the visibility of symptoms among patients (that is, consumers) and to provide better public education programs on mental health promotion and prevention.

Guest Blog What Goes Through My Head When I Diagnose A Child With Schizophrenia

By  Dr Jennifer Russel, Child and Adolescent Psychiatrist, Vancouver, BC

Reposted from Huffington Post with permission from Dr Russel and for the parents of those with schizophrenia for the Christmas Season.

I know what it’s like for people and families facing harrowing, life-altering illnesses to receive the nourishing support they need from those around them. My husband survived pediatric cancer. At age 14, he developed chest pain, a cough and was eventually diagnosed with Hodgkin’s Disease. After surgery, chemotherapy and radiation, he achieved remission and has been well ever since.

The psychological effects of his cancer still haunt us. His mother has made me promise to call her and wake her up if he is ever in an Emergency Department — she still lives with fear to hear those words again, “Your son has cancer.”

My husband often speaks of the support he received from family, friends and his school during this very difficult time. Unfortunately, these helpful responses aren’t what the families of my patients receive.

As an adolescent psychiatrist, I have spent the last 10 years working on inpatient psychiatric units, where I have diagnosed and treated adolescents with what was initially psychosis, and later diagnosed as schizophrenia. I have had to sit face to face with mothers, fathers, aunts, grannies, brothers and sisters, and tell them that their teenager — the same one that cuddled up to them at night, baked cookies and scored the winning goal in soccer — has schizophrenia, a lifelong chronic condition which has robbed their child of their mind, their ability to differentiate what is real and what is fantasy.

Even once we have treated the frightening positive symptoms (hallucinations and delusions) the vast majority of patients are left with lifelong negative symptoms (apathy, inability to experience pleasure, lack of motivation, decreased or blunted emotion and decreased speech) in addition to significant cognitive decline. By the time these parents have come to me, their child has often been ill for some time. Despite this, for many this diagnosis comes as a surprise.

No one wants to hear, “Your child has schizophrenia.”

I have spent considerable time reflecting on how to deliver this news. Is there a right or best way to tell a parent about their child’s schizophrenia? How can I be supportive, empathic and hopeful, yet honest and direct? I try to imagine — how would I want to be told the news?

What continues to shock and sadden me is what happens after parents leave my office. Too often when they call their families and friends, they discover that they, particularly the mothers, are blamed for their child’s schizophrenia or other psychotic disorder.

All of the mothers of my patients have been blamed (at some time or another) for their child’s illness by people they encounter, and even by health care workers. Yes, this still goes on. It is time that we stop Mother Blaming, and we focus on what we know is true about schizophrenia — that it is a brain disorder, where there is too much dopamine active in the brain.

Although we don’t know the exact cause, scientific evidence does tell us that parenting, even bad parenting, does not cause schizophrenia. We all (myself included) have parenting moments that we would like to take back or “do over.” Although we should take the time to reflect on these moments, and work to do better, we should do so with the knowledge that they do not cause schizophrenia.

I say this because the holidays are coming up. When a child gets diagnosed with cancer, which often has better outcomes than schizophrenia, the family is embraced with love. They are showered with care packages, hampers, food delivery schedules and spa gift cards. Go Fund Me campaigns are even started. When a young person is diagnosed with schizophrenia, the family is often isolated, shamed, ignored and silently shut out of the community. Sometimes I wonder if people think that psychosis is contagious.

What these families need is to be embraced, loved and cared for in the same way we care for parents whose children have other serious illnesses. It’s time to stop blaming, and start caring. This holiday season, as you prepare to celebrate, please take a moment to think about how you can support a loved one who is or has a family member suffering from a serious mental illness. Think about what that parent could be going through, and care in the best way you know how.

 

 

 

 

Coming in January: Mind You The Realities of Mental Illness A Compilation of Articles from the Blog Mind You

We have decided to publish a book on the best of our mental illness blogs over the past 4 and a bit years. The book will be available in print and e-book formats everywhere in early 2019.

Below is the introduction:

We began this blog in October 2014 in order to provide commentary on the state of mental illness and its treatment for the lay public. What we provide is a viewpoint from that of a psychiatrist with many years of experience (David Laing Dawson) and a family member of someone who does have schizophrenia (Marvin Ross). Aside from his personal experience (or lived experience as it is commonly referred to), he is also a medical writer, advocate and publisher of books that take a unique look at mental illness.

To date, we have had close to 75,000 views and have been read in 151 different countries since 2014.

We also write on other topics but these are the ones on mental illness covering topics like recovery, treatments, suicide, addictions, and alternative treatments (or pseudo science).

When we began, we had this to say of our purpose:

 Welcome to the launch of Mind You. While we intend to post on mental illness,mental health and life, we decided on the name Mind You to reflect that not everything is black and white. There are ideas and opinions but then mind you, on the other hand, one can say…….

And that is what we would like to reflect. Ideas about mental illness,health and life that can be debated and discussed so that we can come to a higher understanding of the issues. And, we have separated out mental illness from mental health because, despite their often interchangeability, they are distinct.

The National Alliance on Mental Illness defines mental illness as a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a  diminished capacity for coping with the ordinary demands of life. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, post traumatic stress disorder (PTSD) and borderline personality disorder.

On the other hand, the World Health Organization defines mental health as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community. That is quite different from mental illness.

Unfortunately there is a tendency to confuse these and organizations like the Mental Health Commission of Canada have a tendency to talk about mental health issues and problems which are not the same as mental illnesses.

 Both Dr David Laing Dawson and I (Marvin Ross) will be posting on a regular basis on a variety of topics.

The posts we have selected for this volume are the most widely read over the past 4 years.

Mind You, ISBN 978-1-927637-31-9, 193 pages distributed by Ingram

 

Ignorance and Depravity Goes to Washington

By Marvin Ross

Every week I think it can’t get any worse and it does. I’m talking about our southern neighbours of course. Just how low can it go? Well, it seems that there is no bottom to the ignorance and depravity of the Trump administration.

First, we have the attacks against the transgender community. If people are law abiding and civil, what they are or what they do is their business. And do normal, sensible people really care where others pee? I remember being in a hotel in the 1960’s in some small community in Guatemala. Down the hall were two doors – one marked damas and the other caballeros. They both lead into the same large room with cubicles and basins lining either side of the room. That would likely cause a stroke in South (or is it North) Carolina in 2017.

But then, to top off that bit of idiocy, we have the new communications director for the White House who has no idea how to communicate suggesting that another official is a fu@@@ paranoid schizophrenic. Words fail me at this total display of ignorance, indecency and lack of civility.

I’ve just finished reading White Trash The 400 Year Untold History of Class in America and I have to say that the author got it wrong. White trash extends into the White House.

Like most Canadians, I have friends and relatives in the US and they are intelligent decent people with whom, mostly, I share similar values. But those sensible, decent, civil people need to stand up and do whatever they can to get their country back and to help it move into the 21st Century. And lest we forget, that includes health care for your citizens. No one in civilized society anywhere can fathom how you can argue about the need to provide citizens with health.

Before you suggest that no one should throw stones, let me explain that other countries have grown. Racism and incivility exists everywhere and probably always will but most countries have gone beyond that being the norm and deal with it when it occurs. Canada’s record with Indigenous people is not very impressive but efforts are being made. The overt racism towards others and homophobia is no longer the norm. Just look at the minorities in the current Canadian cabinet or the Sikh with a full beard and turban running for the leadership of a national political party.

In Hamilton,  posters promoting Fringe Festival plays  about feminist and LGBQT topics were defaced with biblical anti-feminist and anti-gay graffiti. That was denounced in social media and by civic officials and festival officials have put rainbow coloured stickers over the graffiti saying “All for love. And love for all”.

I lived in England for a year during the Enoch Powell era when racism and anti-immigrant sentiment was very strong. Today, I marvel at the English cultural mosaic that is reflected in British TV mysteries and the BBC News. The vote for Brexit may have been a bit of a setback but gone are the days when BBC newsreaders and journalists had to be white and all talked with that upper class Oxbridge accent. Not anymore.

Countries evolve and also regress as liberal Germany did in the rise of Hitler. It is time for the decent Americans I know to actively work to take back their country and to evolve. I’m waiting for US organizations like NAMI, Mental Health America and others to speak up and and denounce the obscene insult to people with mental illness and  hopefully, they will by the time this gets released on Monday. I am writing it on Friday.

A Rose by any Other Name

Guest Post by Joseph Merlin Bowers from The Unashamed Schizophrenic

I have a friend who is a dedicated and effective advocate for people like me who have serious mental illnesses. Living in a politically correct world, she asked me once what term I would prefer when someone refers to the mentally ill. After all we are told that words matter. Perpetuating stereotypes is the cruel consequence of words like crazy, lunatic, nutcase and the like.

I spent some time trying to think of the perfect word that would be descriptive, non-derogatory and accurately portray one of us with a serious disease of the brain. After some time I came to realize that I just don’t care and I probably should not.Two quotes come to mind: Shakespeare-“A rose by any other name smells just as sweet.” Brene Brown-“Loving ourselves through the process of owning our story is the bravest thing we’ll ever do.”

Whatever word one uses to describe a serious brain disease, what matters is the image the word conveys to the listener and how that listener reacts to that image. I don’t care what you call me. I do care how you react to me and treat me.

I totally own my story. My story involves mental illness. When I went up the stairs in my house with a loaded shotgun intending to kill my grandmother, I was totally bat shit crazy. Sometime latter when in recovery, I apologized to my grandmother for scaring her badly. She said that the doctors told her that it wasn’t really me that assaulted her. That is only true in a sense. I would never have dreamed of harming  my beloved grandmother when my brain was healthy and operating normally. What I did had nothing to do with who or what I really am when healthy. But in another sense it was me. In the grip of insanity, I did what I did. It was me. It wasn’t anybody else. I can’t own my story without acknowledging that.

I belong to the biological explanation for most serious mental illnesses school of thought. I’ve seen brain scan and activity images showing physical differences in the brains of schizophrenics and people with bipolar disorders. When I first encountered this information I had two simultaneous reactions. My first was dismay. If my disease is a physical deformity what hope do I have of recovery. I can’t just change my behavior or my way of looking at things and reacting to events.

My other reaction was a feeling of liberation. My disease was not my fault. It was not my families fault. It was nobody’s fault!

I have friends whose stories are much harder to own than my own. Doing so requires much courage and strength. We have done things we will always regret. We wish to hell we could go back in time and undo what we did. To own our stories is necessary to put them behind us, get on with our lives and live in the now, looking to the future.We know the science of why we behaved in a manner uncharacteristic of who we really are.

We are ashamed of nothing. To react with shame to words like crazy, lunatic or nutcase is self stigmatizing. It involves buying into the fiction that having a mental illness is something to be ashamed of. What other disease of what other organ should one be ashamed of?

When I acted crazy it was because I was crazy. I would prefer to have you say I was crazy than something like “a soon to be consumer of mental health services”.

Stigma, The Brain And Brain Illnesses

By Dr David Laing Dawson

Every day the news contains at least one item describing our struggle to understand a difficult or troublesome or tragic human behaviour. As I write this there is an ongoing trial of a man accused of killing, dismembering, and then burning a Calgary man and woman and their grandson who happened to be on a sleep over with his grandparents. It is reported that the accused held a grudge against this grandfather because of a failed business arrangement years ago. The grudge “grew in his mind” until….

Then I read of a woman who committed suicide two months after the birth of a child. The grieving husband wants to shed light on post-partum depression but the emphasis in the article was about trying to alleviate the shame some women feel because they cannot breast feed.

This is the article that stuck in my mind because it emphasized the problem of stigma, the need for awareness, and the “let’s talk about it” approach to “mental health”. All well and good. But it continued the trend of trying to understand these tragic behaviours as the consequence of some kind of rational, all-be-it extreme, thought processes.

I understand this. When confronted by any odd human behaviour we try to “understand” it by applying two mechanisms: a logical sequence of cause and effect and empathy (how would I behave in similar circumstances?).

We live our lives believing in the supremacy of mind; we organize socially and act independently within an assumption of “mind”, of “free will”, of “choice” and consequences and personal responsibility. We are very reluctant to accept the fact that the brain can hijack this process, that the brain is the primary organ dictating human behaviour, that the brain, this biological computer system of cells and neurohomones and fragile connections, can go wrong. This reluctance has extreme advocates such as Bonnie Burstow who thinks…. or who’s brain leads her to think…

Actually I have no idea what she really thinks and why she thinks  it.

But phrases like “mental health issues”, euphemisms for mental illness, and much anti-stigma publicity continue to support the primacy of mind and downplay the role of brain. They continue to support the notion that all troubles, with a little support, acceptance and understanding, can get better, be overcome.

This does a tremendous disservice to those who suffer from true, serious mental illness.

From her culture, her family, and perhaps from all the current pop cultural emphasis on breast feeding, the new mother in question probably felt some degree of disappointment that she could not breast feed. But this was not an experience that propelled her, through a logical sequence of thought processes, to suicide.

No. Serious postpartum depression, and postpartum psychosis is as clearly as any serious mental illness, a brain problem. The brain has hijacked the thinking process. It is no longer rational. This is a brain illness.

Prevention of the tragic consequences of this illness requires knowing which women who have given birth are at risk, screening for and identifying this illness, recognizing it as a brain illness, and treating it vigorously as one would treat any serious and life-threatening illness.

Sure, let’s talk about it and de-stigmatize it, but we also need to recognize that it is an illness, a brain illness, and offer, make available, medical/psychiatric treatment, and occasionally protect by holding the sufferer in a safe environment while waiting for treatment to take effect.

And, contrary to what Bonnie Burstow and the anti-psychiatry people say, we now have effective treatment for depression and psychosis.

Naming

By Dr. David Laing Dawson

exorcism Part 1 of a few.

Disease, illness, affliction, problem, atypical neurological development, eccentricity, issue, alternate reality, way of life, gift? There is no shortage of words and phrases to name and describe the nature of our struggles to cope, to live and survive in our social world. But each word conveys implications of value, worth, status, promise, expectation, and responsibility. Often these implications themselves determine which word is chosen. About once a month I am told I am about to see (in consultation) a child who has been labeled “gifted”. Whereupon I must try to find a delicate way of asking if “gifted” means Carnegie Hall by the age of 13, or brilliant at quantum mechanics but can’t relate to people, or simply learning disordered, or, careful with these words now, mentally handicapped.

Unfortunately many of the words we use, benign and descriptive at first, over time accrue negative value like small crusty accretions. There wasn’t anything wrong with “retarded” (slowed, behind) until it became an epithet in the schoolyard.

To prevent misunderstanding, but inevitably to obscure, we often fall back on what an editor friend of mine calls “weasel words”, benign enough to not offend, but careless and unhelpful. “Issue” is one of those words, as in “addiction issues”, and “mental health issues.” I don’t know why anyone would say, “He has addiction issues.” rather than, “He is addicted to heroin.” But they do. The use of “mental health issue” is easier to understand, though equally unhelpful. The speaker or journalist is trying to avoid the word “illness”, as in “He suffers from a mental illness.”

A Monty Python skit comes to mind, in which the doctor hesitates while telling his patient that he has, or suffers from, Syphilis. He gets to the word and, instead of speaking it, bends and whispers it into the open drawer of his desk. The patient doesn’t hear the word and asks the doctor to say again. In Monty Python fashion this repeats over and over until….

Actually I don’t remember the ending and I cannot find it on Youtube. But I imagine Michael Palin finally screaming the word, and a few others, at John Cleese.

We avoid the word because of the stigma attached to it, thus increasing the stigma. It was not until we openly used the word “cancer”, that we didn’t run from it, euphemize it, hide it, that it began to lose its stigma. Once free of its stigma the doors opened, research money poured in; clinics, wards, whole hospitals were devoted to helping those who suffer from cancer. The illness cancer, the disease cancer. Not the “cancer issue”.

Terry Fox did not run across Canada with a leg amputated to raise money and awareness for Bone Health Issues.