<%ParlWebsiteContext.IncludeResources()%> <%ParlWebsiteContext.RenderHeader()%>
Home page Version françaiseTable of contentsTable of Contents
Previous DocumentNext Section

Mental Health, Mental Illness and Addiction:

Overview of Policies and Programs in Canada

Report 1


ORDER OF REFERENCE

Extract from the Journals of the Senate for Thursday, October 7, 2004:

The Honourable Senator Kirby moved, seconded by the Honourable Losier-Cool:

That the Standing Senate Committee on Social Affairs, Science and Technology be authorized to examine and report on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October 2002.  In particular, the Committee shall be authorized to examine issues concerning mental health and mental illness.

That the papers and evidence received and taken by the Committee on the study of mental health and mental illness in Canada in the Thirty-seventh Parliament be referred to the Committee; and

That the Committee submit its final report no later than December 16, 2005 and that the Committee retain all powers necessary to publicize the findings of the Committee until March 31, 2006.

The question being put on the motion, it was adopted.

Paul C. Bélisle

Clerk of the Senate


SENATORS

The following Senators have participated in the study on the state of the health care system of the Standing Senate Committee on Social Affairs, Science and Technology:

The Honourable Michael J. L. Kirby, Chair of the Committee

The Honourable Wilbert Joseph Keon, Deputy Chair of the Committee

The Honourable Senators:

Catherine S. Callbeck
Ethel M. Cochrane
Joan Cook
Jane Mary Cordy
Joyce Fairbairn, P.C.
Aurélien Gill
Janis G. Johnson
Marjory LeBreton
Viola Léger
Yves Morin
Lucie Pépin
Brenda Robertson (retired)
Douglas Roche (retired)
Eileen Rossiter (retired)
Marilyn Trenholme Counsell

Ex-officio members of the Committee:

The Honourable Senators: Jack Austin P.C. or (William Rompkey) and Noёl A. Kinsella

or (Terrance Stratton)

Other Senators who have participated from time to time on this study:

The Honourable Senators Di Nino, Forrestall, Kinsella, Lynch-Staunton, Milne and Murray.


 

MENTAL HEALTH, MENTAL ILLNESS
AND ADDICTION:
overview of policies
and programs in canada

INTRODUCTION

I

n February 2003, during the Second Session of the Thirty-Seventh Parliament, the Standing Senate Committee on Social Affairs, Science and Technology received a mandate from the Senate to study the state of mental health services and addiction treatment in Canada and to examine the role of the federal government in this area.  The Senate renewed the mandate of the Committee in the Third Session of the Thirty-Seventh Parliament (February 2004), and then again in the First Session of the Thirty-Eighth Parliament (October 2004).

This mandate reads as follows:

That the Standing Senate Committee on Social Affairs, Science and Technology be authorized to examine and report on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October 2002. In particular, the Committee shall be authorized to examine issues concerning mental health and mental illness;

That the papers and evidence received and taken by the Committee on the study of mental health and mental illness in Canada in the Thirty-seventh Parliament be referred to the Committee, and

That the Committee submit its final report no later than December 16, 2005and that the Committee retain all powers necessary to publicize the findings of the Committee until March 31, 2006[1].

For the purpose of this study, the Committee adopted a broad approach towards examining mental health, mental illness and addiction in terms of: the prevalence of mental disorders and their economic impact on various sectors of the Canadian society, including business, education and health care systems; relevant federal and provincial policies and programs; mental health strategies in other countries; mental health promotion, mental illness and suicide prevention; mental health related disease surveillance and research; access to and delivery of mental health services and addiction treatment; support to families and caregivers; and the potential for the development of a national action plan on mental health, mental illness and addiction in Canada.

The Committee’s study on mental health, mental illness and addiction includes four reports.  The following table provides information on each individual report and the proposed timeframe for publication:

STUDY ON MENTAL HEALTH, MENTAL ILLNESS AND ADDICTION
INDIVIDUAL REPORTS AND PROPOSED TIMEFRAMES

Report

Content

Timing

First

Fact-based document providing historical background, overview of service delivery, respective roles of federal and provincial/territorial governments, assessments of policies and programs based on public testimony and literature review

November 2004

Second

International comparative analysis (Australia, Canada, New Zealand, the United Kingdom, and the United States)

November 2004

Third

An issues and options paper summarizing the issues which the Committee will address in its final report and raising options for addressing these issues

November 2004

Fourth

Recommendations for reform

November 2005

This report, which consists of eleven chapters, constitutes the first report by the Committee on mental health, mental illness and addiction.  Chapter 1 summarizes the personal stories of one individual living with mental illness and three family members affected by mental illness who candidly shared their experience with the Committee.  Chapter 2 provides further information on the impact of mental illness and addiction on affected individuals, their families and caregivers.  Chapter 3 examines the issues of stigma and discrimination and their impact on individuals with mental illness and addiction.  Chapter 4 defines the various concepts related to mental health, mental illness and addiction.  Chapter 5 provides information on the prevalence of mental illness and addiction and their economic impact on Canadian society.  Chapter 6 reviews the relationships between mental illness/addiction and work and examines ways to address mental illness and addition in the workplace.  Chapter 7 provides a chronological overview of the development of mental health services and addiction treatment in Canada.  Chapter 8 compares the organizational structure and level of integration of the mental health services and addiction treatment system in some provinces and highlights the major differences of all provincial mental health legislation.  Chapter 9 provides an overview as well as an assessment of the direct and indirect roles of the federal government in mental health, mental illness and addiction.  Chapter 10 provides an overview of the state of research into mental health, mental illness and addiction in Canada.  Chapter 11 examines various ethical issues related to mental illness and addiction with a particular focus on service delivery, research, capacity to consent to treatment, and privacy and confidentiality issues.



PART 1

 

The Human Face Of Mental Illness And Addiction

CHAPTER 1:
Witnesses Share Their Personal Experiences[2]

(…) I believe it is time to ask the opinion of service users and mental health experts. And who else but us are the experts in our disorders, needs and problems? We obviously cannot cure ourselves. We are people with a certain ability to think. We need to be heard, and I thank you for doing that.

[Loïse (9:18).]

INTRODUCTION

On February 26, 2003, the Committee embarked on its study on mental health, mental illness and addiction by putting a human face to the issue.  More precisely, members of three families affected by mental illness and one individual with mental illness accepted our invitation to speak together about their experiences – how mental disorders affected their lives.  These four witnesses came from all over the country with first-hand experience of mental health and addiction issues to tell their stories to the Committee.  To make them comfortable enough to talk candidly, the Committee referred to them by their first names only.  This chapter provides a summary of their testimony.  It illustrates graphically why the study of mental health, mental illness and addiction has become such an emotional cause for the members of the Committee.

Throughout its study, the Committee also received evidence on the lives of many other Canadians affected by mental illness and addiction through public hearings, letters and e-mails.  The experience these individuals shared with us is summarized in Chapter 2.

1.1        IN THEIR OWN WORDS

1.1.1      Loïse’s Story

Loïse spoke to the Committee about her own experiences with mental health problems, specifically bipolar disorder:

Ten years ago, following the sudden death of my partner in life, I had an episode of manic psychosis. During that phase, you lie, you spend money, and you are sure you have money, and you believe what you're doing, which is out of context. You feel you could save the world during that period. I had an episode which lasted six months and ended with a suicide attempt. That was followed by four years of depression.

At the emergency department of the hospital where I was taken, it was recommended that I go to a crisis centre. That was the start of nine years of unfailing support from community organizations and four years of continuous fighting to obtain the necessary psychological and pharmaceutical assistance from institutions and psychiatrists.[3]

She recounted the number of times and the variety of health care professionals to whom she has had to retell her story over and over again:

For years, I had to tell and repeat my life story to the following persons: an emergency nurse, the emergency psychiatrist, a medical assessor at the crisis centre, a psychosocial worker at that centre – they talked about my life history and constantly went back to the traumas, the painful things, and each time I had to start all over from scratch – a psychiatrist at the hospital crisis centre, a social worker at the hospital, an intake officer at the CLSC, a CLSC caseworker, a psychosocial worker at the CLSC and the CLSC family physician. It was extremely painful (…). I don't know how I managed to go on. There were also an assessing psychiatrist on duty at the hospital, six different psychiatric nurses and four different psychiatrists at the outpatient clinic – because they often change – a psychiatrist specializing in mood disorders who had a therapy group, a psychiatrist and three residents, whom she was training at the mood disorder clinic – and, lastly, three years ago, a psychiatrist who is still monitoring me and with whom I feel I have a privileged relationship.[4]

She also talked about there being little or no integration of services and supports and the important role community-based organizations played in her recovery:

With the energy I still have, I have decided to get involved at the community and advisory level on the city's regional health board. If I had not had the community services, I would not be here to speak with you today.

Yes, the institutions eventually helped me, the psychiatrists too, but they could also have killed me by making me relive the awful traumas I had to face. The duplication, rigid parameters and problems of approach at the institutional level must expand, and they have to work with the community agencies to help the users of those services find the help they need.[5]

Loïse stressed the importance of addressing the stigma and prejudices associated with mental illness and addiction:

Since being diagnosed with my disease, I have lost the esteem of some members of my family. I have had to fight that, and many people have had to do that as well.

(…)

The deep and persistent prejudices that still exist in our society must be addressed on an urgent basis either through media campaigns or by other means.[6]

With respect to the media, she noted particularly:

We organize press conferences for the community sector, for users, to explain the various diseases to people, but no journalists ever come. However, if someone who is mentally ill commits an indictable offence, the headlines read, “Schizophrenic kills wife,” “Manic depressive man abuses his children.”' And yet, I’ve never seen, “Cancer patient kills his wife,” or anything like that. In this regard, the media don’t help matters. There is work to be done. In a more educated, specialized population, where there are fewer prejudices, things are better, but it's still a very serious problem.[7]

1.1.2     Ronald’s Story

Ronald spoke to the Committee about his life with his wife, who suffers from schizophrenia.  He spoke about the onset of her disease about a decade after they were married in 1959 to today, and about how ill-equipped he was to help her then. “I had no idea what was going on. I was not familiar with mental illness,” he said.[8]  He explained:

I was married in 1959, and the first disorders began in the 1970s. We already had three children.

(…)

I have accepted my decision to stay with her, for better or for worse.

At the time, my wife didn’t want to be hospitalized because, in her mind, there was no disease. She was not ill. Since the disease did not exist, I had to find a way to have her hospitalized.[9]

Ronald explained to the Committee the processes he went through to try to get help for his wife:

I spoke about the matter with my attending physician, who told me: “There's definitely something wrong with your wife; you should have her examined.” But that required papers from two psychiatrists. The attending physician undertook to find two psychiatrists who would sign the papers and have her hospitalized.

Once the papers were signed by the two psychiatrists, she didn't want to go to the hospital. I told her: “You go to the hospital on your own, or the police will come and get you.” I had to go get a piece of paper from the judge, and she agreed to be hospitalized.

She was hospitalized for three months and attempted suicide a number of times. Someone stayed in her room 24 hours a day for three months to prevent her from committing suicide. Lastly, she left the hospital under medication. At that time, she was taking neuroleptics (…). The crises gradually disappeared completely. The positive side of the disease, that is to say the hallucinations, religious delusions and so on, disappeared. But what appeared at that point, and what the drugs don’t work on, was the negative side of the disease, that is to say the social side, the lack of self-confidence and personal hygiene, the feeling she had that she was worthless and that she was absolutely incapable of succeeding at anything, and so on. It's so subtle because she believes she’s good for nothing and a failure; she also can’t accept anyone loving her or telling her that she’s good and able to succeed; that would be betraying what she actually believes.

She definitely let herself go.[10]

He told the Committee that, as his wife’s disease progressed “we lost our friends and no longer had any social life, love life or sex life. Ultimately, we no longer had anything.”[11]  Talking about his life with his wife today, he said:

At home, my wife’s disease and symptoms have disappeared. The psychiatrist sees my wife once every six months, but things aren’t better. The entire negative side of the disease has worsened. Now she hardly ever gets dressed, she has no initiative and she is interested in nothing. She registers for courses in literature and painting, but always drops out. She comes home discouraged.

The children do not come to the house because they cannot cope with the situation.[12]

Ronald felt alone in that there was little support available to help him understand his wife’s illness and manage the situation properly:

At the time, I was alone. The situation was difficult, and I had no help. I had to deal with all that. How I managed to get through it all, I don't know. […] there was no violence. It was more emotional. My wife withdrew from the world. There was very little violence. It occurred on a few occasions. There were some suicide attempts because she had so little self-confidence. But it was very hard on the children.[13]

Ronald also talked about his difficulty in obtaining the medical certificate required for eligibility tax breaks:

(…) at first, the psychiatrist signed a letter for me giving me a tax exemption, but the second one did not do that, and I am no longer entitled to the tax break. That is hard to take. Everyone thinks she’s doing well because there’s no obvious sign in her everyday life, except for her physical appearance.[14]

He talked about a pilot project dealing with individualized care plans which, in his view, can only work with strong collaboration among the various mental health care professionals who are involved:

I remember an experiment that was conducted in which they talked about individual service plans. The mentally ill person was supposed to be the central person, and, around him or her, there was a team, the psychiatrist, the nurse and so on. That didn't work because they weren't able to bring the entire team together.

Now it works in small organizations such as ours, where the nurse agrees to cooperate and the doctor as well.[15]

In response to what was happening to his wife and family, Ronald went into volunteer work.  Discovering that the best way to help relatives is to set up an organization to take care of individuals with mental disorders, he and other volunteers founded Le Pavois, an organization that strives to achieve social reintegration and rehabilitation through work.  At Le Pavois, individuals with mental illness re-socialize through office workshops and cooking workshops.  Once they have succeeded in a controlled environment, integration officers visit employers and try to find them internships and then jobs. Le Pavois also runs a second-hand clothing store, a photocopying service and a cafeteria at a provincial health and social service center.  Ronald also stated:

These social businesses are an intermediate step enabling our members to move from Le Pavois to the actual labour market. We have realized that it is far too stressful for them to go directly into the labour market. Most are incapable of returning to the labour market.[16]

1.1.3     Murray’s Story

Murray spoke to the Committee about his son, affected by paranoid schizophrenia.  On May 28, 2002, while a patient at the Royal Ottawa Hospital, he left the hospital grounds and found his way onto the Queensway (on a lane reserved for buses) where he was struck and killed by a city bus.  He described his son prior to the onset of his illness in these words:

Before the onset of his illness, approximately six years ago, our son was an honours student, played in the school band and toured Canada and the United States as a member of it, was a first division soccer player, had many good friends and a wonderful, long-term girlfriend, and was a soul mate to his younger sister. In short, he had just about everything going for him.

Things gradually started to go horribly wrong as he descended into the abyss of slow onset paranoid schizophrenia, the mental health care system and social services system.[17]

He described to the Committee a health care system equipped only to respond to crisis:

Invariably, when things really went wrong it was because we could not access the health care system in a timely fashion for reasons of lack of beds, emphasis on community treatment, a missed opportunity for him to go in voluntarily, or shortage of staff and insecure facilities. It seemed impossible to circumvent a crisis. The system only responded to the crisis and only after weeks of drug rebounding, deterioration and many family pleadings and warnings to caregivers. Not once during the many times he was discharged from hospital was he discharged in a stable condition with insight and compliance with medication.[18]

(…)

Even when he was in the hospital there were serious problems to deal with: the failure to obtain service, preparation for certification hearings, doctors meetings, visits to hospitals, Ontario Disability Support Program filings, researching medication and treatment, attendance at support groups, and unsettling telephone calls from our hospitalized son. We worried about his possible flight from the hospital and feared the possibility of long-term brain damage due to the use of inappropriate medications.[19]

Murray stated that the lack of services and supports had a serious negative impact on his son.  He talked about the stress this placed on the entire family, their social network and finances:

As a consequence, he had unpredictable behaviour, outbursts of frustration and violent behaviour at any time of the day or night. This severely traumatized family members. We feared physical injury to our son and to family members, even while sleeping. We slept in shifts. The physical damage to our home was extensive and costly.

(…)

These fears created high levels of stress over the years [that] combined to result in mental and physical exhaustion, and worse.

There was no such thing as a social life. We could not take him with us because he could not tolerate elevated levels of sensory input for any length of time. We could not leave him at home and a sitter was out of the question.

The pain and suffering of my son’s siblings included the loss of an entire university year, the trauma of police incursions into our home and the fear of their brother being injured or killed by police during numerous forced hospitalizations. Our daughter lost a soul mate and our surviving son will spend the rest of his life without his much beloved brother.

This illness (…) limited our opportunity to earn a living. I lost business income and was fired by my employer due to low production. I managed only to maintain my existing client base. I could not gain new clients for three years. I often could not keep planned appointments, as I could not leave the house when my son was at home. I was fearful of arranging appointments in the evenings because I would have to leave my wife and daughter at home alone with my son. There was a high burn rate of our savings.[20]

Murray also talked about how frustrated his family was by the restrictions of privacy legislation which did not allow health care providers to share information with them about his son’s illness:

Why is it that the medical profession is not allowed to share information with family members when it has been shown that family support is beneficial to the patient? The patient is on meds because his thinking is affected; yet the medical profession believes that sharing information with a family member must be a decision of the patient, who cannot make a reasonable or thoughtful decision.[21]

He stressed the need to find an appropriate balance between the right of the patient to be treated and involuntary treatment:

When it comes to balancing rights with forcing medication, as a parent, you are very concerned about your child's life and well-being, and it is not a question of his rights. He has a right to treatment, and he does not realize he needs it. He has a right to life, although he is incapable of maintaining it himself. It becomes very clear when you reach the point where his life is endangered.[22]

Murray raised a question about the appropriate level of government funding for the diagnosis, treatment and research into mental disorders in comparison to other diseases:

My understanding is that both federal and provincial health dollars are to be spent on the health of all Canadians. Why is it that the most vocal and strongest lobby groups get the most money? We have statistics that we can provide on that subject. Meanwhile, these vulnerable people cannot speak for themselves and are left by the wayside. There are no political points to be made in spending money on these groups.

(…)

The rights issue is on our list of things that should be dealt with. It falls outside of the normal legal framework. When dealing with someone who does not have capacity, it is very awkward.

There are varying degrees of schizophrenia and the people who complain about their rights may have a minor form of the illness and feel that they are being persecuted and dealt with unfairly. It is a difficult issue.[23][24]

Murray also raised concern about the lack of early intervention for mental disorders in comparison to other illnesses:

What sense does it make when there are many guidelines to determine if your family member has heart disease, depression, diabetes and so on, but there are no guidelines to tell if somebody is suffering from schizophrenia? The schools simply assume there is a drug problem and this leads to long lags in the treatment. Early treatment is critical.[25]

1.1.4     David’s Story

This was the fist time David had agreed to share his personal experience with anybody.  He stressed that it was not an easy task to recount his story and insisted on the importance of not disclosing his identity:

(…) I want to put a human face on autism by telling you a bit about our family experience. This is the first time I have ever done this. (…) I was told that you wanted to hear a personal story, and that is what I will tell you.

(…)

I will let it all hang out, and that is why I would rather that my identity not be disclosed. Mine is a very personal experience that bares deep personal values and issues. I am not sure whether this presentation will upset me or stabilize me.[26]

David has a 31-year-old son living with autism.  He described his son as follows:

My son is 31 years old. We did not know the extent of his disability until he was 15, which is quite unlike the situation with most people with autism. My son is not classically autistic. He is high functioning; he can speak; he can read; he graduated from high school..[27]

(…)

My son, Adam, had problems in making friends when he was a young boy. We did not know he was autistic. He did not show autistic symptoms when he was two or three, which is when most people demonstrate their autistic tendencies. We did note he was aggressive, particularly towards strangers, and particularly aggressive toward the friends that his brother Andrew would bring home. People with autism do not like changes. They are resistant to change.

We sensed that school was becoming more stressful for Adam as he became older. When he became 15 years of age, he refused to go to school. Other children gave him a hard time. They made fun of him, and he found recess time to be extremely stressful. He became very agitated and angry. He would go out for walks and would return in a burning rage. He would get so angry that he would break windows and pull out light fixtures in our home.[28]

David described in detail years of misdiagnosis, inappropriate therapies and the family’s eventual discovery of what was wrong with their son.  He recalled:

We had no choice but to have him taken to a hospital, where he was admitted and diagnosed incorrectly with bipolar disorder.  That was because our medical system did not have the capacity to diagnose autism at the time.  It is not much better today.  It soon became clear that this diagnosis was not accurate.  The children’s hospital sedated Adam with medication but did not do anything to resolve his basic problems.

We have gone through a number of traumatic experiences. One was the night we had a call at two o’clock in the morning to tell us that Adam had left the hospital. He had jumped through the window onto the roof and then taken a ladder down onto the ground outside the hospital. By the time we got to the hospital Adam had been found by the police and was being treated for hypothermia. He never explained why he had taken such drastic action to jump out the window and climb out and run on the loose in his pyjamas in the middle of the night, but he frequently expressed his anger at us for putting him in hospital. Later, in his anger, he would pull out light fixtures. He became so aggressive and out of control that at one point we had to have him hospitalized in an adult psychiatric hospital, which was quite inappropriate for him but that was the only option available because it was only the adult psychiatric hospital that had the ability to control his access and to keep him restrained.[29]

David recalled that, had he and his wife had known more about autism, they would have been better able to help their son:

At that time, there was very little understanding of autism in our community, so there were no resources that we could access. Our son was different in the sense that he was not classically autistic. Even if he were born today, he would not have been immediately recognized as having autistic symptoms because he did not portray all of the most common symptoms of autism. He could speak. There seemed to be no physical impairment of his speech.

Had we known what we were dealing with, we would not have wasted so much time. We wasted a large part of his life. I am [ambivalent] in my answer to this one. I asked my wife, “Would we have been better off if we had known what we were dealing with?” At one point, we both agreed that we would not have tried so hard. If we had known our son had a disability, we might not have pushed him so hard, because we did push him. We pushed him to the point where we endangered our health. Much of the stress that came out in his physical violence was, to a large extent, because we were pushing him to do things. That created a situation where we were living in a very dangerous environment in our home. We worried about fires and other dangerous situations. We pushed out the envelope really hard. That is one side of it.

The other side is that, had we known what we were dealing with, we would not have wasted all of this time with family therapy and medications that were more appropriate for people with bipolar disorder. We would have taken a much more intelligent approach to trying to come to grips with our son’s problem. We would have sought good advice on how to deal with the problem. The fundamental problem was one of communication.[30]

David also talked about the fear and anger the family lives with:

Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you for a lifetime. The problem is with you seven days a week, 24 hours a day, for the rest of your life. My wife and I expect to have responsibility for Adam until we die. We lose sleep over what will become of him after we are deceased. Our financial resources are depleted, so our ability to provide for him is limited.[31]

He spoke about the strain this mental illness has put upon his entire family, including Adam’s siblings, on his and his wife’s work, on their finances and on their social network:

My son’s ability to communicate is limited, which limits his ability to socialize and to work. He has never worked in his life, and his disability has had a profound impact upon his brother Andrew and upon my wife and myself. It was a big cause of concern for my parents and my wife’s parents, all of who are deceased.[32]

(…)

Up to the point when our problems escalated out of control, we used to entertain friends and associates in our home. We would have them into our home for dinner. We used to reciprocate invitations. We found inviting strangers into our house was hard on both Adam and us. He did not want strangers visiting with us. He has been known to go into the kitchen when my wife has been baking and dump everything on to the floor. That makes it difficult to prepare dinner. The result is, we hardly ever had friends in for dinner. We do not invite them and they do not invite us. Home is not necessarily a haven when living with a person with autism. (…) Having a family member with autism is a lonely, traumatic experience.[33]

David also explained how the family copes with the lack of resources for adults with autism:

The problem with autism is that the family has to bear the full burden of responsibility, financially, emotionally and in every other way. Our family is bearing the full burden of this disability. We receive no help financially or medically. Because our son is high-functioning, government requires that he apply for support, sign the documents, and that, when the government decides that there is a renewal required for the application, Adam has to fill this out.

He does not do it. We did have him on a small income support payment, but he was required to reapply. He delayed and he has now been cut off. He does not have the skills required to maintain access to support, but he is too high-functioning to have us appointed as his guardians to act on his behalf. We cannot go on vacation unless Adam’s brother is at home. As I mentioned, he is a student at university and is unlikely to be spending much time at home in the future.[34]

With respect to community-based services and supports for adults affected with autism, David stated:

There are no services for adults with autism, except respite services for those who are lower functioning. Respite means babysitting, and the people who do respite work are paid minimum wage. After school, there is no structure in the life with a person with autism; there is just an abyss. The prospect of employment is remote without a lot of help, and the family has to shoulder the full burden.[35]

David stressed the importance of recognizing that mental health is as important as physical health and that mental illness should be treated with the same sense of urgency as physical illness.  He believes that the federal government should play a major role in achieving this:

There is no difference between someone who has a mental illness and someone who has a physical illness. That is the key question: Are we treating people with mental disorders with the same urgency that we treat people with physical disorders? I do not think we are. That is the fundamental question here. There is an equal public policy role for government in dealing with mental disorders. How do we do that? How do we change the environment out there?

The reality is that a mental disorder does not have a sense of urgency because it is recognized that people with mental disorders will be around tomorrow, whereas people who have heart disorders or cancer have to be treated today because they may not be around tomorrow. That clouds the whole issue. We must do something about it.

One thing we could do — and this is where your committee can play an important role — is for the Government of Canada, with regard to the transferring of funds for mental disorders, to put those funds in a fiscal envelope to be used only for mental disorders. That money cannot be used for anything else.[36]

1.2        COMMITTEE COMMENTARY

You have to put a human face on it, as the chairman said. I do not know a better way to do that than to have people like the four people at this table stand up and be counted, to say things that are very difficult to say. That is why I think what they have done here today is very courageous.

To be honest with you, I do not know another way to do it. People do not understand. Politicians do not understand. They have no understanding of what we go through. How do you provide that understanding? It is only when they have a family member or some relation who has this dilemma that they can relate to it. It is very difficult to understand unless you walk in our shoes.

[David (9:34)]

The Committee very much appreciates the sincere, thoughtful testimony made by David, Murray, Loïse and Ronald.  Somehow, just saying thank you to them does not seem to be enough.  We appreciate how difficult it was for them to come and talk with us the way they did.

Together, these four witnesses painted a picture for the Committee of the stigma, frustration, fear and anger that affect individuals with mental illness and addiction and their families, of the impact of their diseases on parents and siblings, on their social lives and on their finances.  By telling their moving stories, which were very important to the Committee’s work, these witnesses helped shed light on many issues such as access to care, lack of communication or collaboration between health care providers, a lack of resources and patient rights and privacy issues.  All these issues are addressed in the following chapters of this report.  We do so in the hope that our work will ultimately be of help to David, Murray, Loïse and Ronald and to the thousands of people like them across the country.


CHAPTER 2:
Mental Disorders Touch The Lives Of All Canadians

Mental illness hits everyone — rich, poor, male, female — of every race and creed.

[J. Michael Grass (17:43).]

INTRODUCTION

One of the reasons behind the Committee’s decision to undertake an in-depth study of issues relating to mental health, mental illness and addiction in Canada was recognition by our members of their profound effects on our society: mental illness and addiction affect individual Canadians of all ages in all segments of the population.  The initial phase of the Committee’s study, that has formed the basis for this report, has only reinforced that recognition.

Perhaps it is a neighbour who has Alzheimer’s, a sister who has experienced post-partum depression, a colleague who is on stress leave from work, an uncle struggling with alcoholism, or friends talking about eating disorders, suicidal thoughts, or childhood abuse.  It has been estimated that one in five Canadians will be affected at some point during his or her lifetime by a mental illness or addiction.  It is difficult to imagine a day going by without all of us, knowingly or unknowingly, being in a room, on a bus, at a restaurant, or elsewhere, with someone who has experienced a mental illness or addiction.

This chapter builds on the personal stories of Chapter 1.  It describes the impact of mental illness and addiction on individuals, on families and other care providers, as well as on their communities.  While seeking to expand the understanding of what it is like to live with a mental disorder oneself or to live with someone affected by one, it also presents other facets of the impact of mental illness and addiction that stretch beyond the borders of families and households to encompass schools, offices and the many other places where Canadians interact.

The focus of this chapter is on individual perceptions.  It provides brief glimpses into the lives of some of the many Canadians who live with mental illness and addiction every day.  The excerpts are primarily from evidence contained in letters and e-mails sent to the Committee, from public testimony, as well as from a number of site visits by the Committee, supplemented by information drawn from relevant websites.  In many instances, the stories are those of loss – loss of jobs, of family, of self-respect – and of struggling to obtain needed care.  But there are also positive stories that tell of gains – of knowledge of self and of social, medical and legal services and supports that can help individuals affected by mental illness and addiction to live productive and contributing lives.

The voices are many and fragmented.  They come from individuals who use services and providers who give them.  They are from mothers who care for children, and husbands who care for wives.  They are from teachers who build social and other skills, employers who adapt their workplaces, and community leaders who work to restore neighbourhoods.  They are from people everywhere in Canada.

2.1        INDIVIDUALS LIVING WITH MENTAL DISORDERS

2.1.1     A State of Mind

Many individuals living with mental disorders offered comments on their own mental states, emphasizing particularly the way they are perceived by the larger society to fall under the label “crazy.”  One ended a long letter about his precarious, unsettled life with: “(…) and I’m not as crazy as people think I am.”[37]  Another remembered her first thoughts when diagnosed with a psychosis at age 16 years as: “Oh my God! I can’t be one of those crazy people, with no home, no family, and no life.”[38]

Even those who have the support of family and friends, who live in comfortable homes with regular meals and clean clothes, and who can access new therapies and the best drugs, talk about their sense of shame and failure, particularly as they see others accomplishing the goals they have set for themselves.  They worry about the possible re-emergence of their symptoms.  They know that they are viewed differently from other people and feel the loss of being “different”. In the words of one woman, “it’s worse for us because we know what we’re missing.”[39]

Pat Capponi, author, journalist, speaker and social activist who also refers to herself as a psychiatric consumer/survivor, told the Committee:

A mental patient is just that in the eyes of many.  We are not entitled to be full human beings behind that label, not expected to have basic personalities that mirror those in the greater population, good and bad and everything in between.  A schizophrenic is a schizophrenic, and every action is attributed to that disease and not to the underlying nature of the individual.[40]

Many people associate mental illness and addiction with disgrace; affected individuals are often discredited and, unfortunately, set apart from the rest of society.  Sadly, stigma – whether the result of self-stigmatization or public stigmatization – is the cause of much of the distress those individuals with mental illness and addiction experience in their daily lives.

2.1.2     A Perpetual Cycle

Individuals affected by mental illness and addiction pointed out also how the perpetual cycle of problems they confront makes it difficult to integrate themselves into the broader community and to remain there, leading meaningful and productive lives.  Pat Capponi told the Committee that medication is often seen as the easiest single solution to the complex issues involved, but that this sometimes does little to address the real and continuing underlying concerns:

(…) funding has increasingly gone to keeping discharged patients in chemical straight jackets for the comfort of the mainstream community.  If a client is depressed and upset that his life is so narrowly constricted, his medication is increased.  If he is fearful of a landlord or unable to sleep in an over-crowded room, his medication is increased.  If poverty leaves him hungry and restless, his medication is increased.  And if he has the remaining life inside his body to be angry, the dosages will ensure that that anger is forgotten.[41]

She also told the Committee about how the gulf between the haves and the have-nots is widening, creating particular difficulties for those living with mental illness and addiction:

More people are using the food banks and so the share for the chronic mental patient has been dramatically reduced. A landlord will rent his house to people who he thinks will be less disruptive than a former mental health patient. People get squeezed out. Shelters prefer to house immigrants or battered women because they will not be seen as potentially disruptive. The stigma about the crazy people that we are exists.[42]

Again, the stigma associated with mental illness and addiction may deny affected individuals even such basic rights as shelter and housing.

2.1.3     An Uncoordinated State

Individuals concerned with all aspects of mental health and addiction emphasized the need for those living with these conditions to have access to a continuum of services and supports that includes affordable housing and short-term intensive support services for people immediately after their discharge from hospitals, shelters, or jails.  But they also stressed that the delivery of these services and supports must be much better coordinated across the entire mental health and addiction “system” and better integrated with the services offered by the broader social sector.

One example illustrating the absence of that coordination involved a patient/client living on welfare with some social security money to rent an apartment as well as meet some other expenses.  This person had a relapse, spent 15 days in an acute psychiatric unit, and as a consequence lost both the social security funding and his apartment.  As a result, the government had to accommodate him in a more expensive hospital bed until a space in the community became available.[43]

Another example illustrates where early intervention and subsequent coordinated preventive action could have made a difference.  A 25 year old man in Vancouver, in and out of foster care and jails since he was 13 years old, was diagnosed for first time with bipolar disorder While on remand for three months for a break and enter committed to secure money for drugs.  He was not tried but released on conditions, but, unfortunately, before long found himself back in jail.  One condition of his release was that he continue taking three drugs: Ritalin, an antidepressant and methadone. Taken together these made him “hazy”.  He was provided $28 a week for food and accommodation, and found a small room on the downtown eastside.  He could not afford transit, however, and had no support system in place.  Within two weeks he had broken his probation after trying to connect with his father who had just been released from William’s Head prison on Vancouver Island.[44]

Older Canadians are affected by many mental health issues that affect both their independence and the sense of control they have over their lives.  For example, both for individuals with dementia and many others, a loss of access to transportation can mean the loss of contact with the outside world, of independence and of control.  While public transportation may be an option for some, for others, it is simply not available.  The Alzheimer Society recounted the stories of two individuals affected by the dementia.  Trevor Jones, a career police officer was diagnosed at 57 years of age, while Jesse Roy, whose own mother had died of Alzheimer’s, still lived in her own home and volunteered to help others when, at 77 years of age, she was diagnosed.  Among their many concerns, both expressed anxiety particularly about the loss of independence when they lost their driving abilities.  Trevor did not trust himself to take public transportation and was forced to rely on his wife and various friends for transportation.  Jesse worried that having to give up driving would not only curtail her activities; ir would change her living arrangements and require her to move to a care facility.[45]

In all these cases, little or nothing in the way of a support system was available.  Support services were either not available or not integrated in such a way as to providing the affected individuals with the desirable continuum of care.

2.1.4     An Underserved State

The provision of adequate services and the ability to access them by those in need was one of the most crucial issues raised by all individuals living with a mental disorder.  One young person wrote: “I credit my good health and success in life to a revolutionary treatment approach for youth experiencing their first break with reality…I can say with confidence that early intervention saved my life.”[46]

Her letter went on to note that access to such life-saving programs is limited because they exist primarily only as research models in teaching hospitals:

“Even in Ottawa, the nation’s capital, the First Episode Program is grossly under funded with a waiting list of one year.  People suffering their first episode (of psychosis) flounder at best to try and secure treatment.  Many are afraid to reach out for help, others plainly incapable of doing so because of the effects of the illness itself. Families are left to try and deal with what is an impossible situation.”[47]

The need for early detection and intervention in the field of mental illness and addiction is clear.  Eearly intervention can interrupt the negative course of many mental disorders, lessen long term disability and help to reduce the burden on families and other informal caregivers as well.

2.2       THOSE CARING FOR INDIVIDUALS WITH MENTAL ILLNESS

2.2.1     Parental Fears

Parents are the primary advocates for the interests of children who enter any part of the health care system.  When dealing with mental health care, parents confront the reality that their roles as advocates and as providers of care will be a long term one.  They must act as a continuous buffer between the affected individual and an often hostile larger community.  With young children, parents must seek out for themselves a network of appropriate services and supports both within and beyond the health care sector.  The need to exert themselves on behalf of their children often never stops until they themselves are incapacitated by age or illness.

Witnesses told the Committee that many parents fear most what will happen to their children when they can act no longer as their advocates.  Phil Upshall, President of the Mood Disorders Society of Canada and the National Director of the Canadian Alliance on Mental Health and Mental Illness, recounted the story of family friends: “My family had two friends who had people with severe mental illnesses, totally incapable of treatment, living with them. The big fear in those families was what would happen to their son or daughter when they go.”[48]

One 76 year old woman wrote the Committee about her many fears for her son who had been institutionalized for psychiatric treatment.  She worried about the effectiveness of the treatment and the side effects that she had observed in her son.  She wanted an investigation of the living and other conditions he confronted, but could not afford to pay the necessary legal fees out of her monthly pension.  She said: “I don’t want to die while my son is a prisoner patient in that place…Because I’ve seen what they do to patients with no living relatives.”[49]

Another mother wrote about her autistic adult son, his problems with sleeping at night and his need for her to be available always, to tuck him in and reassure him so that he could get back to sleep.  She wrote:

I worry about Stephen in the long term and short term.  Will we ever get any programs in place to help him? What if I get sick? What if my cancer comes back? What will happen to him ultimately? Who will care for him as I do when I cannot, simply because I won’t be here.[50]

Families are often the principal resource and the sole support available to individuals with mental illness and addiction.  Because of the limited resources available in the hospital sector and the community, it is parents who house, care, supervise and provide financial assistance to their affected children. As those who recounted their experience above clearly demonstrated, this can be a source of enormous tension and emotional stress.

2.2.2    Parental Advocacy

Parents are deeply concerned for the welfare of their children when they enter the health care system for the treatment for mental illness.  As lay persons, they feel inadequately equipped with the knowledge and resources needed to deal with the many challenges they know lie ahead.  They worry about their being an insufficient level of care and that the care that is available may not always be delivered with the sensitivity their loved ones require.  They worry about the cost of additional specialized care and of legal advice. Many parents and affected individuals stressed the need of those living with mental disorders to have available to them dedicated advocates to help them gain access to appropriate housing supports, as well as treatment and care.

One mother spoke of her experiences of navigating around obstacles in the current system; she wanted assurances that family members would have a “first right of refusal” to be part of the decision-making team, to obtain information about the affected family member’s diagnosis and treatment, to consider options about the care provided.[51]

Some witnesses pointed that children with autism or those suffering from Foetal Alcohol Syndrome and Foetal Alcohol Effects (FAS/FAE) require constant care.  They emphasized that many parents and caregivers not only experience social and emotional isolation from family, friends and their communities, but they also carry heavy financial loads as well in their effort to get help.  Pam Massad, speaking about FAS/FAE noted that:

In their attempts to access the required services and supports for their child, many families experience serious financial burdens. Many provinces and territories do not offer financial support for specialized health services, educational supports and legal supports.[52]

The father of a three year old son, Steven, diagnosed at the Children’s Hospital of Eastern Ontario (CHEO) on December 8, 2003 to be suffering from autism, wrote about the lengthy and costly experience of trying to obtain appropriate treatment. “It has been now 261 days since then and we are on waiting lists.  We have not received either one cent’s worth of medically necessary treatment or financial assistance so far.”[53]  His e-mail went on to point out that the family had resorted to private care out of necessity, and now faced out of pocket costs of about $50,000 a year.

2.2.3    Parental Survivors

Parents may outlive their troubled children. While survivors of suicide speak of the desperate need to do something urgently to stop their “needless, unspeakable pain,” those who are left behind after successful suicides are devastated by the loss of their loved one. Diane Yackel of the Centre for Suicide Prevention pointed out that each day, there are 10 more families in Canada “whose lives were unalterably changed because a father, a son, a sister, some family member, with some degree of intentionality, chose to die by suicide.”[54]

She recounted the tragic stories of four mothers:

·        The first concerned a woman whose two husbands had both died by suicide.  “She came to see me at the point in time when her son- her only child – had hanged himself. Several weeks after her son’s death, she was released from her work responsibilities because (quote) ‘she no longer was a productive employee.’ ”

·        Then there was the incapacitated mother.  “She was frozen in time, unable to sleep anywhere but on her chesterfield near the front door of her home.  This was the chesterfield from which she last saw her son, and from where she heard the gunshot.  Perhaps, just perhaps if she stayed there long enough, he might come back through that front door again, and she would have a second chance to stop him from going into his bedroom and shooting himself.”

·        And the Aboriginal mother “whose 19 year-old daughter lay down on the railway tracks when life became too difficult for her to go on.”

·        And yet another mother, herself a widow, “who discovered and had to cut down the body of her 14 year old daughter hanging in their house.”[55]

It is truly not possible to comprehend and convey the profound anguish of those left in the aftermath of suicide.  The central message survivors of suicide have conveyed to the Committee is the need for a comprehensive suicide prevention strategy that includes both early identification of suicidal behaviour and crisis management.

2.3       THOSE PROVIDING MENTAL HEALTH AND ADDICTION SERVICES

2.3.1     Provider Access

In mental health, most of the many gatekeepers to the “system” are health care professionals who deliver treatment; others, however, such as teachers and social workers, also provide access to necessary services and supports.  In Canada, access to such services and supports is unevenly distributed.  Shortages are evident everywhere, but they are particularly severe in certain parts of the country.

One brief submitted to the Committee highlighted the hardship afflicted on individuals with mental illness and addiction by restricted access to providers:

In Yukon, for example, there is at present no resident psychiatrist at all.  The result is that people are forced to travel far from their homes to receive needed services – a hardship (ironically dubbed “Greyhound Therapy”) that is doubly stressful for someone dealing with a mental health problem.[56]

Providers told the Committee that they can often correlate at least part of the problem faced by individuals with mental illness and addiction with the physical and socio-economic conditions in which they live.  One psychiatrist who provides home visits talked about the lives of some of her patients:

A significant number of my patients do not have a method of transportation and we are a large rural community spread over a vast area.  Significant numbers of my patients live with many extended family members in inadequate housing; some homes still have dirt floors and no indoor plumbing or source of heating in the winter other than a woodstove.[57]

She also recounted how it took almost six months for an older man with untreated paranoid schizophrenia to develop a relationship with her through his doorway before he felt comfortable enough to invite her inside with him.[58]

These stories point to the need for addressing the special mental health challenges faced by under-serviced rural and remote communities across the country.

2.3.2    Teachers and other School Service Providers

The role of teachers, schools and others in the early detection of mental disorders received considerable attention during the Committee’s hearings.  Many witnesses emphasized the importance of schools in early detection so that mental health problems and illnesses can be addressed before they cause lifelong negative effects.  Several witnesses made connections between observed problems with reading and writing and psychological distress and/or mental disorders.  As Tom Lips from Health Canada pointed out with respect to literacy, “there may be mental health reasons that contribute to illiteracy. As well, there are mental health impacts to being illiterate.”[59]

At the same time, witnesses recognized that, although school remains the place where children spend most of their time and acquire many of their adaptive social skills, the current reality is that the resources available are thinly streched, making appropriate intervention more difficult to provide.  Teachers face larger classes than they used to; this makes the identification and confrontation of students with more and complicated individual problems extremely difficult.  The services provided to schools by nurses, psychologists and social workers have also been significantly reduced.  Some treatment approaches are so fragmented that they actually end in the middle of the school year.

Children with Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), and learning disabilities have problems with impulsivity, attention and managing their behaviour.  They may also have difficulty reading, distinguishing sounds and understanding the teacher.

The Committee heard that in Toronto the waiting list just for diagnosis in the publicly funded system is 18 months – almost 2 school years.  Private access is available within a week or two to those who can afford $2000 for the services of a psychologist (of which approximately $300 may be covered by employer-sponsored insurance).[60]

Diane Sacks, President-Elect, Canadian Paediatric Society, pointed out how many children with ADD, ADHD and learning disabilities mask their difficulties until junior high school when they begin to fail:

They fail at a time when, for many, they feel that their bodies are also failing them. They are not strong enough, thin enough or definitely not tall enough. The pressures are enormous. Poor social skills, which go along with this condition, now cause rejection and peer conflicts. How can a failing, “dummy” teen with poor social skills, which is what untreated ADHD looks like, form the peer group we talked about as one the essential tasks of adolescence? He cannot. Self-esteem issues arise. This is directly related to acting out, bullying and problems with the law.[61]

The fact that the onset of most adult mental health disorders occurs during childhood points, once again, to the need to devote more resources to early detection and intervention.  Schools must be recognized as key players in the provision of mental health services and supports.

2.3.3    Primary Health Care Providers

The Committee was struck by the number of witnesses who talked about the significant breadth and range of services needed.  Some pointed to the need for more training for primary care physicians in identifying mental disorders and in securing earlier interventions.  Others talked about roles for nurse practitioners, social workers and psychologists.  Many insisted upon the need to combine physical and mental care as part of the care continuum, pointing out how too often we treat the mind and the body differently, almost as if they were entirely separate entities.

The Canadian Psychological Association pointed to the particular psychological issues facing different individuals at different stages in their lives, such as:

·        a twelve year old who must adapt to a diabetic regimen that involves injections, daily blood testing, and dietary adjustments;

·        a middle-aged man having survived a near fatal heart attack whose family members are obliged to modify their behaviours and relationships;

·        a family caring for a parent with dementia at home;

·        or a mother facing her demise from non-Hodgkin’s lymphoma with the prospect of leaving behind two young children.[62]

In this vein, Dr. Cornelia Wieman, a psychiatrist from the Six Nations Mental Health Services (Ohsweken, Ontario), expressed concerns about adopting a narrow biological approach to mental illness.  She provided an example that illustrated why simply prescribing an antidepressant for a patient would have been an inadequate response:

(…) I have a patient who last year lost a son to suicide while he was in police custody.  The same year, she was diagnosed with kidney cancer and underwent to removal of her kidney by surgery. Her youngest daughter, aged 14, has coped with her brother’s suicide by engaging in extremely risky behaviour including engaging in substance abuse, unprotected sexual activity and staying away from the home for days at a time.  This woman has been on medical leave from work, which has caused a great deal of financial stress. She also has several extended family members living in her home. She is a widow with few social supports.

Using this patient as an example, it would be unrealistic of me to simply prescribe her an antidepressant medication and reassure her that over time she will feel better.  However, by prescribing her an antidepressant as well as activating a number of psychosocial supports, including counselling, and after working with her quite intensively over the period of a year at our clinic, she is finally feeling better.  She returned to full-time employment this month.[63]

She also pointed out that as a fee-for-service physician, she only gets paid for direct patient contact and not for time spent conferencing with other service providers about shared clients.

The discussion the Committee had with these witnesses suggests that we must re-think the way we address mental illness in relation to physical illness.  We must also address the appropriate balance between a narrowly defined biomedical approach and psychosocial intervention.  Appropriate incentives must be developed to ensure that health care providers can devote the time required to address the specific, usually time-consuming needs of individuals affected by mental illness and addiction.

2.3.4    Provider Distress

Mental health professionals face their own anxieties.  They are not always able to address the needs of their patients and their families as fully as or in ways they would like.  In some instances, this is the result of a lack of sufficient resources; in others, they are aware that diagnosing a mental illness may require them to treat the individual and their family differently than if the problems were physical in nature.

One paediatric specialist spoke about gains made in the methods for diagnosing many childhood conditions and the insufficiency of research into methods for prevention and treatment.  She observed that the search for appropriate services can become a major undertaking when:

(…) services that provide treatment are seriously underfunded and leave families scrambling for the few spaces that are available. Fragmentation of services mean these families and their primary care provider must look for new options almost on a yearly basis.”[64]

Other providers pointed out that it was not that long ago that treatment methods and attitudes we now find reprehensible were standard practice.  For example, Dr. Michel Maziade, Head, Department of Psychiatry, Faculty of Medicine, University Laval (Quebec), stated:

In the 1950s and up until the late 1960s, psychoanalysis was very prevalent and everything was environmental. It is as if the brain did not exist at all.  If you look at papers published at that time, all those disorders – schizophrenia, autism, and manic-depressive disorders – were the fault of the mother.  It was always because the mother was lacking in education.

(…)

In those days, we accused people. I am a practising child and adolescent psychiatrist and I did that myself as a resident in the early 1970s. I was giving the parents the diagnoses for this terrible disorder and instead of providing support to them, as one would if their child had a cardiac disorder, I was accusing them because I was suggesting that they go to psychotherapy to help the child, because something was missing in the relationship. That was terrible.[65]

2.4       MENTAL HEALTH, MENTAL ILLNESS AND ADDICTION AT WORK

2.4.1     Workplace Secrets

In some workplaces, individuals with mental illness or addiction may have access to some assistance in dealing with their problems, but with or without these supports, they may still feel compelled to keep their personal struggle hidden.  All too often, the fear of losing one’s job or of being stigmatized by one’s colleagues is enough to prevent individuals living with a mental disorder from seeking treatment.  The Committee heard that it is common for employees to blame themselves and remain silent when they become depressed or unable to meet their employers’ expectations because of a mental health or substance abuse problem.

Individuals tend to keep personal issues to themselves sometimes with negative consequences for their future employment as well as their well-being. These stories were brought to the Committee’s attention.  For example:

Michael Koo, 34, says he was devastated when his coworkers complained in a performance evaluation that he wasn’t pulling his weight. But Koo says he didn’t feel comfortable explaining that a major depression was the reason for his low productivity. “My thought was, ‘I can’t afford to let them know what was going on, ‘cause I’ll lose my work’,” he recalls, adding that stress leaves were associated with shame.

Jane, a 30-year-old biologist, says she never discussed her clinical depression with her employer because she was afraid of losing respect. “People in the workplace want to be dealing with consistent and reliable colleagues,” she says. “Being perceived as being vulnerable to depression limits how much people feel they can invest in you.” Although she hid her depression, Jane says she lost all credibility with her company when her work began to suffer. “I would fall short on my commitments and was unable to justify my inability to produce according to expectations,” she explains.[66]

These stories underline the importance of increasing awareness in the workplace about mental illness and addiction.  An important step will have been taken once workplace managers have better knowledge of mental illness and addiction; they will be more willing to and capable of offering accommodation to those workers suffering from mental illness and addiction.

2.4.2    Workplace Successes

Individuals living with chronic mental illnesses have struggled to create a place for themselves in the workforce.  Although traditional vocational rehabilitation has been available for decades, the development of “survivor” businesses is relatively recent.  Pat Capponi outlined the struggle of the Ontario Council of Alternative Businesses to develop opportunities for chronic psychiatric patients in neighbourhoods where ratepayers, local politicians and businesses were hostile.  She told the Committee that:

Our community began to see that there were possibilities out there for us.  We began to have role models and leaders.  We were achieving, breaking myths and assumptions about who and what we were, and we were forming a community.  Chronic psychiatric patients showed commitment in reporting to work on time.  In acquiring new skills, lasting friendships were created and people grabbed every opportunity to learn from each other’s experiences.[67]

Work makes an important contribution to the process of recovery.  Employment may reduce the frequency and severity of episodes of acute illness by providing structure, the opportunity for social connections and a fuller life.  Regular remuneration also helps to reduce dependence on social assistance and the needs of individuals for mental health services and supports.

2.5       PEOPLE LIVING WITH MENTAL ILLNESS WHO ARE UNDER FEDERAL RESPONSIBILITY

2.5.1     Veterans

Concerns about the care of Canadian veterans took the Committee to Ste.-Anne-de-Bellevue Hospital in Quebec, the only facility for veterans still administered by Veterans Affairs Canada.  Like many older Canadians, veterans prefer to stay at home as long as possible before entering long-term care facilities. By the time they enter such facilities, they can be quite frail.  At Ste. Anne’s anywhere from 50 to about 80 per cent of the residents are affected by some form of dementia.  The loneliness and boredom experienced by many patients in such facilities are often exacerbated by mental disorder.

Bernard Groulx, Chief Psychiatrist at Ste. Anne’s, outlined some of the specific issues encountered in caring for patients suffering from dementia:

These patients have severe problems. They wake up at night; they are disoriented in space, time and people; incontinent; they are emotionally unstable; they are hyperactive; frequently aggressive; have delusions and hallucinations; show a variety of agitated behaviour.[68]

Specialized nursing approaches are essential to ensure a reasonable quality of life for these patients.  The nursing staff at the hospital has to support families as well as the residents.  A nurse at Ste. Anne's Hospital said: “I work a lot with the families, especially with Alzheimer’s. I have to communicate with the families, make them comfortable and help them to understand the disease. (…)  I support everything they have to go through, the hard times.”[69]

2.5.2    Inmates

Inmates in federal correctional services fall under federal responsibility.  Recent trends indicate that the proportion of the population of federal offenders with mental health and substance abuse problems is growing, even though overall prison admissions and institutional population have been in decline.  Some, such as women and Aboriginal peoples, have particular needs.

Within Correctional Services Canada, the need for mental health treatment is acknowledged:

Mental health treatment for offenders is required if we want to reduce the disabling effects of serious mental illness in order to maximize each inmate’s ability to participate electively in correctional programs; to help keep the prison safe for staff, inmates, volunteers and visitors; and to decrease the needless extremes of human suffering caused by mental illness.[70]

Officials from the department also talked about the need to deal with offenders who require specialized mental health intervention in order to reduce the “revolving door” phenomenon:

There is what we call a revolving door between corrections, both federal and provincial, but also the community, where often people who are afflicted with mental health disorders find themselves in the criminal justice system. While mentally disordered offenders are often less likely to reoffend — including violently — they are more likely to return to prison due to a breach of their release conditions — often as a result of inadequate support while they are in the community.[71]

This points to the need to develop better links between the federal and provincial governments and between the justice and the mental health service/support systems.  Correctional Service Canada must do more to prevent the “revolving door” phenomenon.

2.5.3    First Nations and Inuit

Questions were raised concerning the inadequacy of access to individual counselling services for First Nations and Inuit patients under Health Canada’s Non-Insured Health Benefits (NIHB) counselling program.  The NIHB program supports clients “in crisis” or those who cannot access counselling through out-patient clinics funded by the province or who cannot pay for private counselling.  But limited incomes, combined with transportation and access issues, mean that many individuals fall through the cracks.

According to Dr. Cornelia Wieman:

Presently, my patients can access individual counselling through the Non-Insured Health benefits program. (…) However, (…) the limit is 15 sessions with the possibility of renewing for a further 12.  A total of 27 sessions for many people is not sufficient to help them adequately address their mental health concerns.[72]

Clearly, the NIHB program must be revised so as to better reflect the mental health needs of First Nations and Inuit peoples.

2.6       COMMITTEE COMMENTARY

Even with our somewhat broader look at the lives of individuals affected by mental illness and addiction the Committee is acutely aware that the preceding excerpts from the evidence received have only scratched the surface of what is a very large problem.  It is impossible to fully enumerate the many groups of Canadians who are affected by mental illness and addiction and to portray fragments from all their lives.

In the remainder of this report the Committee has gathered together the evidence it has heard over the past 18 months.  This is the first step in coming to grips with the enormous challenges that lie before us in developing a set of recommendations to improve the quality of life of those who are living with, and those who are directly or indirectly impacted by, mental illness and addiction.  This includes all of us.


CHAPTER 3:
Stigma And Discrimination

3.1        INTRODUCTION

In the course of its hearings, the Committee heard from many witnesses about the enormous importance of addressing head on the problem of the stigmatization of, and discrimination against, individuals living with mental disorders. There was considerable discussion concerning how best to reduce stigmatization and combat discrimination, as well as over how to understand the relationship between these two phenomena.

There was widespread agreement on the absolutely central place occupied by these issues in considering how to improve access to and the delivery of mental health services and to enhance the mental health of Canadians more generally. Ms. Heather Stuart, Associate Professor, Community Health and Epidemiology, Queen's University, put it well in her testimony to the Committee:

We are in a community mental health model right now and so stigma and discrimination are the crux of the issue for us. They are our major barriers to the treatment of mental illness in our modern day. We expect, when we put people into the community, that the community will want them and nurture them. This is not happening.[73]

The first section of this chapter looks at how to define the two phenomena, stigma and discrimination, how they are related, and some of the factors that contribute to their stubborn persistence. The second section explores the impact of stigma and discrimination on individuals living with mental disorders in order to better understand why many have described it as being worse than the burden of illness itself. The third section discusses the options and strategies that have been suggested to combat the stigmatization of individuals living with mental disorders and to reduce the discrimination they face. A section devoted to Committee Commentary concludes the chapter.

3.2       DEFINING STIGMA AND ITS RELATIONSHIP TO DISCRIMINATION

Two questions pervade the discussion of stigma and discrimination:

1.             How does the stigmatization of individuals living with mental disorders relate to the discrimination they face?

2.             Why is it so hard to change attitudes and reduce discrimination?

We will examine the second question in Section 3 of this chapter. As for the relationship between stigma and discrimination, some witnesses contended that the term stigma itself tends to focus our attention on the wrong thing, and that it should be discarded in favour of talking in terms of discrimination. This was the view expressed by Ms. Nancy Hall, Mental Health Consultant:

I come from the school that calls it what it is, which is discrimination. In any of the other disability organizations in which I am involved, they do not use the word “stigma.” It is a polite term. They use the word “discrimination.” To me, discrimination is when someone with a mental illness is systematically treated differently from someone who does not have a mental illness.[74]

The Committee nonetheless feels it is important to try to get a handle on what is meant by stigmatization. Although the relevant literature does not yield a single, universally-accepted definition that encompasses all the dimensions of this complex phenomenon,[75] stigma has variously been defined “as a sign of disgrace or discredit, which sets a person apart from others,”[76]  and as “stereotypes that reflect a group negatively.”[77] Ms. Bronwyn Shoush, Board Member, Institute of Aboriginal Peoples' Health, Canadian Institutes of Health Research, suggested to the Committee that:

…stigma might be seen as a veil over a person that prevents others from focusing on that person. There needs to be a way to lift that veil and take a look at the person and not see only things that are different about him or her.[78]

Witnesses generally agreed that stigmatization involved attitudes, while, as Ms. Stuart said, “… the action is discrimination.”[79] Dr. Julio Arboleda-Florèz, Professor and Head, Department of Psychiatry, Queen's University, put it this way:

…discrimination exists, but it is different from a stigma. A stigma concerns our attitude toward particular groups. Discrimination is a denial of legal entitlements that we all ought to be able access.[80]

The connection between stigma and discrimination has been described in the literature as involving a number of overlapping elements that come together to form a continuum linking the development of negative stereotypes to actual discriminatory behaviour towards people with mental illness. Three key steps have been identified in this process:

1.      Labelling or stereotyping

2.      Developing prejudice

3.      Practicing discrimination

Researchers have also distinguished between public stigmatization (ways in which the general public reacts to a group based on stigma about that group) and self-stigmatization (the reactions which individuals turn against themselves because they are members of a stigmatized group).[81]  The following table provides an overview of the three components involved in the process of stigmatization of individuals living with mental disorders.

THREE LEVELS OF PSYCHOLOGICAL STRUCTURES THAT COMPRISE PUBLIC AND SELF-STIGMATIZATION

 

Public Stigmatization

Self-Stigmatization

Stereotype:

Negative belief about a group, e.g. dangerousness, incompetence, character weakness

Negative belief about the self, e.g. character weakness, incompetence

Prejudice:

Agreement with belief and/or negative emotional reaction, e.g. anger, fear

Agreement with belief Negative emotional reaction e.g. low self-esteem, low self-efficacy

Discrimination: Behaviour

response to prejudice

e.g., avoidance of work and housing opportunities

e.g., failure to pursue work and housing opportunities

Source: Amy C. Watson and Patrick W. Corrigan, “The Impact of Stigma on Service Access and Participation,” a guideline developed for the Behavioural Health Management Project.

The development of stereotypes is a key part of the process of stigmatization of, and discrimination against, people with mental illness. Stereotyping involves using selective perceptions to place people in categories and exaggerating the differences between these various groups[82] (‘them and us’). As with racial prejudice, stereotypes also make people easier to dismiss and, in so doing, the stigmatizer maintains social distance. In this regard, Ms. Hall also told the Committee that:

…as [a] Mental Health Advocate, nine out of ten people told me that once their diagnosis was acknowledged, once they were open about their diagnosis, people treated them systematically differently.[83]

Stigmatizing stereotypes can be so strong that stigmatized people are thought to “be” the thing they are labeled.  For example, some people speak of persons as being epileptics or schizophrenics rather than describing them as having epilepsy or schizophrenia.  This is revealing with regard to mental illness because it is different for other diseases.  A person has cancer, heart disease or the flu — they are one of “us,” a person who just happens to be beset by a serious illness. But the person is a “schizophrenic.” Thus the whole person is stigmatized,[84] as Ms. Pat Capponi told the Committee:

A mental patient is just that in the eyes of many. We are not entitled to be full human beings behind that label, not expected to have basic personalities that mirror those in the greater population — good, bad and everything in between. A schizophrenic is a schizophrenic and every action is attributed to that disease and not to the underlying nature of the individual or his circumstances. A person who is bitter and angry or who is addicted to crack or other drugs does something terrible and a chorus of voices is raised against all who carry the same label.[85]

There are a number of stereotypes that are commonly identified in the literature as being widely held about persons with serious mental illness. These include:

1.      People with mental illness are dangerous and should be avoided. 

2.      People with mental illness have brought their problems upon themselves and are to blame for their disabilities since they arise from weak character.

3.      They are incompetent or irresponsible and require authority figures to make decisions for them.

4.      They are viewed as childlike and needing parental figures to care for them. 

5.      Poor prognosis: the view that there is little hope for recovery from mental illness.

6.      Disruption in social interaction: the view that people with mental illnesses are not easy to talk to and have poor social skills.

7.      People with mental illness are not as intelligent as others.

However, a very recent (June 2004) scientific survey of public perceptions of mental illness that was undertaken in Houston, Texas, (the first of its kind in a major metropolitan area)[86] produced some interesting and encouraging findings, that the study’s authors believe are representative of mainstream attitudes in the United States as a whole. In the words of the study:

The data indicate that an overwhelming majority of the public at large has come to believe that mental illness is essentially a physiological disorder that ought to be treated like any other physical illness. Only a tiny minority continues to believe that mental illness can be attributed to any sort of morally relevant defect of character.[87]

Moreover, by 56 to 31 percent, more than half of Harris County residents believe that most people being treated for mental illness are able to live a normal life. A clear plurality (47 percent) would not be concerned if they discovered that a person under treatment for a mental illness were living in their neighborhood, and a majority (by 51 to 42 percent) would be willing to pay higher taxes to improve access to mental health services in the Houston area.[88]

3.2.1     Self-Stigmatization

Self-stigmatization can be defined fairly easily. It is simply agreeing with the negative attitudes about mental illness and turning them against oneself. Persons living with mental illness who believe that other people devalue and reject people with mental illness will most likely fear that this rejection will be applied to them personally. Such a person may wonder, “Will others think less of me, reject me, because I have been identified as having a mental illness?” Then, to the extent that it becomes a part of their worldview, that perception can have serious negative consequences.  Expecting and fearing rejection, people who have been hospitalized for mental illnesses may act less confidently, be more defensive, or they may simply avoid a threatening contact altogether.[89]

Self-stigmatization takes the form of “I am” statements such as the following:[90]

·        I really am unable to care for myself.

·        I’m dangerous and could snap at any minute.

·        I’m no different than a child.

·        I can’t handle responsibility.

·        Don’t give me money. I’ll only blow it.

·        I’m a bad person.

·        Who would want to live next to a person like me?

·        Everyone can plainly see I’m weird.

·        I’m not worth the investment of time and resources.

·        I have a weak personality.

·        I am not able to do…

Self-stigmatization has a broad and deleterious impact on the person with mental illness, and can worsen the course of his or her disorder. Persons who self-stigmatize are likely to have more problems and disabilities with their mental illness than people who do not internalize statements like those above. One reason is that people who self-stigmatize have poor self-esteem, and with the deprivation of self-esteem comes a loss of hope. Not only do such people believe they are not worthy of respect now, they believe things will not change in the future.[91] Ms. Rena Scheffer, Director, Public Education and Information Services, Centre for Addiction and Mental Health, told the Committee that:

On an individual level, stigma not only leads to low self-esteem, isolation and hopelessness, but all of those characteristics also have been found to be predictors of poor social adjustment, so people end up in an endless cycle of poorer quality of life.[92]

People with diminished self-efficacy due to self-stigmatization are less likely to apply for jobs or apartments (“Someone who is mentally ill like me can’t handle a regular job!”).[93]  Other people with mental illnesses try to avoid discrimination by simply concealing their illness. In doing so, however, they can incur more stress from the continuous fear of being discovered, from endangering their mental health by tending not to take time off even when they need it, and from remaining ineligible for appropriate accommodations for their disability that might have made their working lives easier and more enjoyable.

Self-stigmatization is also one of the factors that contributes to the fact that many people with diagnosable mental disorders do not seek treatment. When people fear being identified and labeled as having a stigmatizing condition, they may then delay or avoid seeking treatment. According to Ms. Scheffer:

Estimates are that two-thirds of people who require treatment for a mental illness do not seek help, largely because they are either unaware of the symptoms or because of the stigma associated with the illness or its treatment.[94]

Dr. Richard Brière, Assistant Director of the Canadian Institutes of Health Research Institute of Neurosciences, Mental Health and Addiction offered the following analogy to the Committee:

People who need help often do not seek help because they are ashamed of what happens to them. If we can do something about the stigma attached to mental illness, you will have people bragging about it the way they do about heart disease, saying, “Well, I had a bypass.” People will tell their friends about that, but many people will not talk about their mental illness problem.[95]

Families of individuals living with mental disorders can also take on board the fear of stigmatization, with potentially serious consequences. In her brief to the Committee, Ms. Stuart referred to a case in which a mother whose daughter’s mental health was deteriorating initially avoided treatment out of fear that her daughter would be branded as “crazy” by medical personnel. Ultimately, the police had to intervene when the daughter’s worsening condition degenerated into a full-blown crisis.[96]

Stigma is not a new phenomenon. In fact, stigmatization of people with mental disorders has persisted throughout history.[97] In this regard, Ms. Scheffer, in her brief to committee, referred to the renowned sociologist Erving Goffman who pointed out that the word stigma in the original Greek was used “to refer to bodily signs designed to expose something unusual and bad about the moral status of the signifier.”[98] While the exact content of the mythology that contributes to the stigmatization of people with mental illness has no doubt changed in the intervening millennia, it is striking the extent to which the term still describes a situation in which the person being stigmatized is being set apart (and de-valued) because of certain behavioural or physical traits.

In general, given the significance of the phenomenon of stigma, the Committee agrees with Mr. John Arnett, Head, Department of Clinical Health Psychology, Faculty of Medicine, University of Manitoba, who argued that the process of stigmatization itself has a real and profound impact on individuals living with mental disorders. This is how he put it in his testimony:

We know that stigmatization is characterized by bias, distrust, stereotyping and so on. It frequently reduces an individual's access to resources and opportunities for housing and jobs and ultimately leads to low self-esteem, isolation and hopelessness. There is no question that this occurs in many cases independently of the limitations that may be imposed by the mental health disorders themselves. In other words, stigmatization seems to have an independent capacity to do this.[99]

3.2.2    The Role of the Media and the “Attribution of Dangerousness” to Individuals Living With Mental Disorders

One factor that has often been cited as contributing to the persistence of stigmatization of persons with mental disorders is media coverage. About a third of people identify the media — including print, radio, television, and internet-based news, advice, entertainment and advertising — as their main source of information about people with mental illnesses.[100] Unfortunately, the media often reinforces myths and stereotypes about people with mental illnesses. Analysis of ways in which film and print represent mental illness have shown that, in particular, two of the stereotypes of persons with mental disorders are spread by these sources: people with mental illness are “homicidal maniacs who need to be feared”, and they are “childlike and need to be protected by parental figures.”[101]

Content analyses of American television have shown that over 70% of major characters with a mental illness in prime time television dramas are portrayed as violent; more than one fifth are shown as killers.[102] The typical newspaper depiction of individuals with mental illnesses shows them to be psychotic, unemployed, transient, and dangerous—not as productive members of a family or community. Similar studies of newspapers in Canada and Britain have shown that stories featuring violent acts by people living with mental disorders appear more frequently and are given greater prominence than articles containing a more positive portrayal.[103]

Negative conditioning towards people with mental disorders that encourage stigmatization may begin at an early age. The first study of children’s television programming in New Zealand and the U.S., published in 2000, concluded that “the frequent and casual use of fundamentally disrespectful vocabulary such as crazy, mad, nuts, twisted, wacko or loony demonstrated for children that such expressions are acceptable or even funny.”[104] The researchers responsible for this study actively looked for, but were unable to identify, any positive attributes associated with those who were depicted as mentally ill, nor did they find any understanding of the suffering that mental illness involves.

Some of the stereotypical depictions of people with mental illness that occur regularly in the media include the following: rebellious free spirit; violent seductress; narcissistic parasite; mad scientist; sly manipulator; helpless and depressed female; and comedic relief.[105] Most often such characters have no identity outside of their stereotypical “crazy” behaviour, and are primarily identified by an inferred mental illness.

At the centre of media accounts and public misperceptions is the attribution of a propensity for violence to individuals living with mental disorders. For example, 88% of participants in focus groups conducted by the Ontario Division of the Canadian Mental Health Association in the early 1990s believed that people with a mental illness “are dangerous or violent.”[106] Not only is this a persistent problem, but it would appear that it is getting worse over time. In the United States, attitudes toward mental illnesses have apparently become more infused with concerns about violence associated with these illnesses. Thus, between 1950 and 1996, the proportion of Americans who describe mental illness in terms consistent with violent or dangerous behaviour nearly doubled.[107]

According to the U.S. Surgeon General this attribution of a propensity towards violence on the part of individuals living with mental disorders is a key factor in explaining the persistence of stigmatizing attitudes:

Why is stigma so strong despite better public understanding of mental illness? The answer appears to be fear of violence: people with mental illness, especially those with psychosis, are perceived to be more violent than in the past.[108]

It is important to note that this fear of violence rests on what is largely a misperception of the facts. In the words of a Health Canada sponsored study, “there is no compelling scientific evidence to suggest that mental illness causes violence”.[109] Some American studies have argued that at most 4% of all violent incidents have any connection to mental illnesses.[110] At the very least this strongly suggests that public fears are largely misplaced, although they are clearly widespread.

There is, however, evidence that suggests that people who do not receive treatment for their mental illness, or who have concurrent disorders (that is, individuals who have a mental disorder as well as a substance abuse disorder) are more likely to be violent than the general population. Still, there is very little risk of violence or harm to a stranger from casual contact with an individual who has a mental disorder and the overall contribution of mental disorders to the total level of violence in society is exceptionally small.[111] In this regard, Ms. Scheffer commented that, “as a predictor of violence, mental illness ranks far behind other risk factors like age, gender and history of violence or substance abuse.”[112]

And Ms. Hall noted:

…the sad thing is that actually people with mental illness are more at risk of self-harm. In my province, a person a day commits suicide. Even though the reality is that they are more at risk of doing harm to themselves, the public perception is that they are indeed a danger to others, which simply is not the normative truth…[113]

Ms. Jennifer Chambers, Empowerment Council Coordinator, Centre for Addiction and Mental Health,  also shared the following insight with the Committee:

One difficulty of shifting the discussion of the association between people in the mental health system and violence is the circular reasoning that happens. If a particularly violent crime is committed people say, “Oh, that person is sick, psycho, weird,” so there is no way to get outside the debate, even if they were not considered to have any particular mental or emotional disturbance before committing the act.[114]

The influence of media accounts can be enormous, both for the public in general and for those living with mental illnesses. One British study found that over 20% of the people they interviewed were more inclined to accept the media portrayal of people with mental illnesses as being prone to violent behaviour than they were to believe the reality they encountered in their own interaction with people living with mental disorders. An example was given of a young woman who lived near a mental hospital just outside Glasgow, Scotland, that has since closed. She had worked there as a volunteer and mixed with the patients. She told the researchers:

The actual people I met weren’t violent — that I think they are violent, that comes from television, from plays and things. That’s the strange thing — the people were mainly geriatric — it wasn’t the people you hear of on television. Not all of them were old, some of them were younger. None of them were violent — but I remember being scared of them, because it was a mental hospital — it’s not a very good attitude to have but it is the way things come across on TV, and films — you know, mental axe murders and plays and things — the people I met weren’t like that, but that is what I associated them with.[115]

The same study concluded that the most powerful negative effect seemed to be in the area of self-stigmatization. As one interviewee put it: “You see a programme and it shows a very bad image of what it feels like yourself and then you think, ‘What are my neighbours going to think of it?’”[116]

3.2.3    Stigmatization of Mental Health Providers

Not only do individuals living with mental disorders suffer from misrepresentation in the media, but so too do mental health practitioners. One study indicated that since the mid-1960s, only three films portrayed therapists sympathetically (Good Will Hunting, 1997; Ordinary People, 1980; and I Never Promised You a Rose Garden, 1977). In every other instance, mental health practitioners were portrayed in one or more of the following ways: neurotic, unable to maintain professional boundaries, drug- or alcohol-addicted, rigid, controlling, ineffectual, mentally ill themselves, comically inept, uncaring, self-absorbed, having ulterior motives, easily tricked and manipulated, foolish, and idiotic.[117] Such portrayals tend to convey the idea that helping others is an unworthy vocation requiring little skill or expertise.

Witnesses repeatedly indicated that stigmatization affects those who provide care and services to individuals living with mental disorders. Dr. Gail Beck, Acting Associate Secretary General, Canadian Medical Association, remarked that, “I regularly hear jokes that I am not a real doctor. That is not related to what I do in practice; it is related to the fact that there is a stigma and discrimination about the kind of illnesses that I treat.” And Dr. Rémi Quirion, Scientific Director of the Canadian Institutes of Health Research Institute of Neurosciences, Mental Health and Addiction, told the Committee that:

Psychiatrists are still stigmatized compared with the other types of doctors. It is still often seen more as an art than a science. This needs to change. We need to make sure that the young students will be stimulated to go into psychiatry.[118]

According to Ms. Manon Desjardins, Clinical Administration Chief, Adult Ultra Specialized Services Division, Douglas Hospital, recruiting medical students to the field remains a problem:

In universities, it is still far more prestigious to go for cardiac, surgery, [or] intensive care rather than psychiatry or geriatrics. Geriatrics and psychiatry are seen to be at just about the same level: they are not very attractive.[119]

Ms. Maggie Gibson, Psychologist, St. Joseph's Health Care London, also pointed to the fact that the stigmatization of individuals living with mental disorders affects the whole range of service providers in the mental health field:

With respect to the issue of family and caregiver stress, I want to comment on the issue of stigma — in particular the neglected stigma associated with using long-term care services. We would benefit greatly from a cultural shift that takes a compassionate and pragmatic approach to identifying the best care options for both older people and their family members and allow for dependency, when it is part of the system. Systems that allow for dependency without devaluing people go a long way to improving mental health.[120]

[121]

Her insistence on the need to deal with the discrimination that is the concrete result of stigmatizing attitudes was a recurring theme during the Committee’s hearings. Mr. Patrick Storey, Chair, Minister's Advisory Council on Mental Health, Province of British Columbia, insisted to the Committee that:

…we need to recognize discrimination against people with mental illness and their family members as just as unacceptable as other forms of discrimination. We need to devote the same energy to its elimination that we devote to the elimination of other forms of discrimination.[122]

In this same vein, Mr. John Service, Executive Director, Canadian Psychological Association, told the Committee about hearing a speech by “a young congressman from Rhode Island by the name of Kennedy”[123]:

He conceptualized the discrimination against people with mental illnesses in the United States as the same kind of discrimination experienced by Black people and by women in the 1950s and 1960s. He said it is the same system, and that we can correct it in the same way. He says you solve that systemic discrimination by doing what we know works in discrimination, which includes things like significant financial investments to turn the system and for affirmative action.[124]

There are many ways that discrimination affects individuals living with mental disorders. They are routinely excluded from social life and can even be denied a variety of civil rights others take for granted. They are often denied basic rights in the areas of housing, employment, income, insurance, higher education, criminal justice, and parenting, among others.[125] People with mental illnesses also face rejection and discrimination by service providers in both the mental health and physical health care systems and discrimination by policy makers and the media.

Professors Bruce Link and Jo Phelan of Columbia University have proposed a useful way of dividing these different manifestations of discrimination into two broad categories: direct discrimination and structural discrimination.[126] In her testimony, Ms. Stuart offered a similar distinction, that between overt discrimination and “acts of omission”:

More insidious is that you may neglect to do something just by virtue of the fact that you think something is not important. You may have a negative attitude or put something on the back burner. I like to think there is as much or more damage done by those acts of omission, at every level of policy or government. We can focus on overt discrimination, and there are certainly huge issues there, but I would like to see it go farther than that. I would like to see the acts of omission addressed as well. If we could get at the stigma and the attitudes that underlie both of those things, we might be in a better position. I recognize that that is difficult to do. Sometimes the actions are easier to address.[127]

3.3.1     Direct Discrimination

Direct discrimination refers to the standard way of conceptualizing the connection between labelling/stereotyping and discrimination. It points to direct discriminatory behaviour on the part of the person who holds the stereotyped beliefs. Direct discrimination occurs most obviously when a person in a powerful role withholds an opportunity.[128] Landlords do not rent an apartment to someone because he or she was in a psychiatric hospital. Employers fail to offer a job interview because the person with mental illness has not worked recently.

The evidence indicates that this form of discrimination occurs with some regularity in the lives of people who are stigmatized. For example, in a Canadian survey of people with mental illnesses, half said the area in their life most affected by discrimination was housing. Research shows that a person’s status as a psychiatric patient means he or she is less likely to be leased an apartment.[129]

There remains a considerable amount of discrimination in the workforce, by both employers and co-workers, towards people with mental illnesses. Surveys show that employers and workers still feel justified distrusting and discriminating against people with mental illnesses. As a result, people with serious mental illness, such as schizophrenia and related disorders, have the highest rate of unemployment and underemployment of all people with disabilities, at a rate of around 90%.[130]

A number of surveys have consistently found that anywhere from one-third to one-half of people with mental illnesses report being turned down for a job for which they were qualified after their illness was disclosed, or had been dismissed from their jobs, and/or forced to resign as a result of their mental illness. Surprisingly, the figures are not dramatically lower for employment of individuals living with mental illness within mental health agencies or for volunteer positions both inside and outside the mental health field.[131]

Not only do families of people with mental illnesses have to cope with the financial, practical and emotional stressors of caring, but they face a kind of ‘discrimination by association.’ They have to deal with strained relationships with other family members or friends, fear, violence, anxiety, conflict, lowered self-esteem, and guilt. Discrimination against family members often stems from misconceptions about the family’s role in the causes of mental illness.[132]

3.3.1.1  Discrimination Within The Health Care System

The importance of dealing with discrimination against individuals living with mental disorders within the health care system itself was raised by numerous witnesses. There is much evidence, Canadian and international, that mental health professionals and health professionals in general can be among those who show discriminatory attitudes and behaviour toward their own clients. People with mental illnesses frequently note that their views are neither listened to, nor respected, and that mental health workers tend to focus on clinical issues of care to the exclusion of social issues. Studies have identified a lack of respectful treatment by GPs and emergency room clinicians as the most common complaint among people with mental illnesses.[133]

This is a somewhat puzzling phenomenon, as Ms. Stuart remarked:

Why are health care workers so stigmatizing? They are among the most knowledgeable people on mental illness that we have in our society. They are invariably identified as the people who are the worst offenders.[134]

Other witnesses concurred that the problem was widespread. Mr. Storey told the Committee:

In the discussions we had with people with mental illness, it was remarkable that they all had stories to tell of mistreatment in emergency rooms, as well as hospitals generally. Even when they were presenting complaints of a physical nature, they were treated as mental patients.[135]

Dr. Jim Millar, Executive Director, Mental Health and Physician Services, Nova Scotia Department of Health, also pointed to hospital emergency rooms as a place where discrimination occurs, telling the Committee that:

One only needs to visit the local emergency room to see stigmatization by health care providers. Mental health clients wait the longest. Their privacy is violated. Their concerns are not dealt with appropriately.[136]

This seemingly widespread discrimination within the health care system has many negative consequences for people in need of help. Ms. Pat Capponi pointed to the lack of trust that ensues:

We have learned that we cannot depend on those working within the system to advocate for us. We cannot even expect them to see us as full individuals behind our obscuring labels.[137]

3.3.2    Structural Discrimination

However, discrimination against people with mental illnesses and their families is not limited to overt acts of discriminatory behaviour by one person directed at another. It can also take the form of what Link and Phelan call structural discrimination.

To see what they mean, suppose that because it is a stigmatized illness, less funding is dedicated to research on schizophrenia than for other illnesses and less money is allocated to adequate care and management. As a consequence, people with schizophrenia are less able to benefit from scientific discoveries than they would have been if the illness they happened to develop were not stigmatized. To the extent that the stigma of schizophrenia has created such a situation, a person who develops this disorder will be the recipient of structural discrimination regardless of whether or not anyone happens to treat him or her in a discriminatory way. 

There are many ways in which this kind of structural discrimination based on stigmatization can occur. Stigma may influence access to treatment by creating undesirable conditions in treatment settings that make seeking help far less desirable than it would otherwise be. For example, there exists a fear of people with psychosis that is out of proportion to the actual risk that people with psychosis pose. To the extent that this fear increases recourse to the use of guards, locked wards, searches and the like, stigma produces very negative circumstances in the treatment environment that could easily make people want to avoid those settings.

Structural discrimination can also be manifested in the general levels of funding that are made available for research and treatment of mental illnesses (see Chapter 9, below). Moreover, within the health care community in general, mental health professionals often feel treated as second-class citizens by their professional peers, and mental health services, programs and research themselves still tend to be given a lower priority than physical health care issues.

 

3.4       REDUCING THE IMPACT OF STIGMA AND DISCRIMINATION

There are both individual and community- or socially-based approaches to reducing the impact of stigma and discrimination. On the one hand, individuals with mental illness can seek out strategies that allow them to cope with, or contest, the stigmatization and discrimination they encounter. On the other hand, socially- or community-based strategies can be developed to attempt to reduce the overall extent and impact of stigmatization and discrimination. In this section we will concentrate almost exclusively on the latter, but, before doing that, a few words on individual approaches are in order.

Broadly speaking, the literature identifies three strategies that are available to individuals living with mental illness:

1.     They can attempt to completely conceal their illness from others with whom they interact; ;

2.      They can practice selective avoidance, limiting their social interaction to people they know to be non-stigmatizers;

3.      They can attempt to educate everyone with whom they come into regular contact about the nature of their illness.

As noted earlier, maintaining secrecy about one’s mental illness can have many negative consequences. According to one study that explored the value of all these individual approaches, it is not just the first strategy listed above that can be counter-productive. Rather, the study concluded unequivocally that all three were harmful and that “using these methods made rejection more likely.”[138]

Given the difficulties associated with these strategies based on individual action it would seem clear that, if there is to be progress in reducing both stigma and discrimination, some form of community or socially based intervention will be necessary. This follows from the fact that both stigma and discrimination are thoroughly social phenomena. They rely on the propagation of myths about individuals living with mental disorders within the institutions of society (schools, workplaces, the media, etc.), and take hold in discriminatory practices that can be enshrined or condoned by law and by tradition.

There is, however, likely no simple or single strategy to eliminate the stigma associated with mental illness.[139] In the first place, stereotypes such as those that sustain the stigmatization of people with mental illness are complex phenomena. They have components that are somewhat changeable but they also have some that are fiercely resistant to change.[140]

As noted earlier, the persistence over time of pervasive stigma attached to mental illness, despite growing knowledge and public awareness of the nature of these disorders, raises an important question with regard to the efficacy of education alone to reduce the effects of stigmatization on the lives of people with mental illness. Stigma was expected to abate with increased knowledge of mental illness, but just the opposite occurred: stigma in some ways intensified over the past 40 years even though understanding improved.[141]

Since stigmatizing opinions are not always closely related to the extent of knowledge about mental illness in general, it follows that campaigns to reduce stigma must be carefully planned and probably have to do more than simply increase knowledge of the stigmatized conditions.[142] One hypothesis that has been advanced to explain why information alone is unlikely to eliminate stigmatizing attitudes holds that stigmatizers need a new emotional experience rather than, or in addition to, a new explanatory model, before they would be likely to call into question any stereotypes they may have taken on board.[143]

Thus, the effectiveness of mass advertising campaigns in reducing stigma and discrimination has been challenged.[144] This is how Ms. Stuart put it:

With respect to anti-stigma interventions, how do we stop stigma and discrimination? We are learning from the World Psychiatric Association work that one size does not fit all. It is a waste of time and energy to embark on a large, public education campaign that is designed to improve literacy as an anti-stigma intervention because segments of the population have different views. They understand their risks differently depending on the diagnostic group.[145]

Results are more promising when media campaigns are backed by ongoing community-based education and action. The general consensus internationally seems to be that public education campaigns are most effective when they are locally based and focused on the anxieties of their target groups.[146] In Ms. Stuart’s words:

We are now talking about more focused and targeted interventions. We have had the best success in all of the things that we have tried by going into high schools and working with young people because they are more malleable.[147]

Reducing stigma will therefore require campaigns that are carefully focussed and targeted to specific audiences. Two recent articles indicate that such carefully targeted campaigns can indeed alter attitudes towards people living with mental health disorders. An evaluation of mental health awareness workshops directed at secondary school students in Britain concluded that “educational workshops with young people can have a small but positive impact on students’ views of people with mental health problems.”[148] An assessment of another British effort directed at police officers also indicated that workshop programs had a positive impact on attitudes, and that “targeting a group in the work-place provides the opportunity to challenge negative stereotypes while addressing specific work-based training needs, thus creating a more favourable learning environment for addressing attitudes and behaviours.”[149]

One leading anti-stigma researcher, Otto F. Wahl, Professor of Psychology at George Mason University in Fairfax, Virginia, put it this way: “If we are going to truly eradicate stigma, we need to have a more concrete, practical and personalized understanding of its effects – that is, how stigma makes people feel and how it affects treatment and recovery.”[150]

One possibility would therefore be to explore destigmatizing strategies that provide forums for the expression of fears that exist amongst the target group, in which people can ask questions and communicate their worries.[151] According to Ms. Stuart:

When we talked about targeting things, we were trying to target experiences. We figured out we had to get them at an emotional level. We had to make them aware that their whole system of beliefs was somehow ill-founded. One of the best ways to do that was to construct situations in which people who have a mental illness could meet people who have perhaps never met someone with a mental illness, under controlled and constructive kinds of situations. They would talk about their mental illness. They would convey factual information, but more important, they would convey information at a human level. That is what made the difference.[152]

Indeed, it is contact with people with mental illness that appears to yield the best prospects for improving attitudes about mental illness.  There is research that shows that members of the general public who are more familiar with mental illness are less likely to endorse prejudicial attitudes.[153] In this respect, Ms. Scheffer told the Committee that:

The most promising strategy for impacting negative perceptions is increasing contact with mentally ill persons. No other strategy has been shown to be more effective.[154]

This conclusion was further reinforced by the results of the Houston area survey of public perceptions of mental illness referred to earlier. Its authors wrote that:

We have been struck continually throughout these analyses by the dominating importance of personal knowledge in shaping public attitudes toward mental health issues. When respondents were asked if they knew of “anyone among your friends or family who has been diagnosed with a mental illness, including clinical depression,” the 38 percent who answered in the affirmative were consistently and significantly more likely than the 62 percent without such personal experience to support both corporate and tax policies to ensure access to mental health services, to be unconcerned upon learning of a neighbor being treated for a mental illness, and to believe that most people undergoing treatment for mental illness are able to live a normal life.[155]

However, recent research also suggests that the way in which contact with individuals living with mental disorders takes place may have a bearing on the extent to which stigmatizing attitudes are challenged. A study by researchers at the University of Chicago Center for Psychiatric Rehabilitation[156] reached a number of interesting conclusions. In the first place, the researchers confirmed previous work that showed that contact with individuals living with mental disorders “yields significant change in attitudes about mental illness.”[157] As well, and contrary to their original expectations the researchers did not find any noticeable difference in the extent of the impact of the contact when contact was via videotape rather than in vivo

However, they did find that stereotypes were not called into question when the contact with the person living with serious mental illness highlighted the symptoms of that illness rather than the possibility of recovery. Moreover, they concluded that their research offered a plausible explanation for why many health care providers remain vulnerable to embracing stigmatizing attitudes. In their words:

Meeting a person with mental illness whose symptoms and other problems are highlighted is not likely to challenge one’s stereotype. This may be one reason why mental health service providers are likely to endorse the stigma of mental illness so highly. Treatment providers, especially inpatient clinicians, largely interact with people with mental illness when they are acutely ill, a status which is likely to confirm the stereotype rather than challenge it. Most of these people are frequently discharged before recovery is evident so that the treatment provider does not have an experience that disconfirms the stereotype.[158]

Ms. Scheffer also suggested that the most effective strategy “in creating understanding and acceptance is a comprehensive health promotion approach combined with a social marketing approach” that would “raise awareness, encourage seeking help and promote positive understanding.”[159]

Mr. Service indicated that stigma can be reduced as a result of the successful treatment and care of individuals living with mental disorders. He told the Committee that:

Stigma is reducing significantly in certain populations. It is the populations who can access and use the service who do not have a problem because their neighbour, their friend, brother or cousin have accessed services and had a good experience. That is how you break down stigma. In our business that is also one of the best referrals. It is not from another professional, it is from somebody saying, “I went to see Mr. Service and he did not a bad job so you might want to try him out.” That is how you get most of your referrals and that is how you break down stigma.[160]

The need to involve individuals living with mental disorders in all aspects of efforts to eliminate stigma and discrimination, was further emphasized by witnesses. Ms. Chambers recommended to the Committee that:

a national education program…directed and delivered by survivors, should be launched to challenge the devastating prejudice and discrimination that exists in our community.[161]

Ms. Capponi pointed to the broad anti-stigmatizing impact of facilitating the participation of individuals living with mental disorders in meaningful and productive undertakings:

We began to tackle poverty and powerlessness directly through the creation of psychiatric-survivor-run businesses. Led by my sister Diana, who had battled mental illness and heroin addiction, they lobbied and developed survivor businesses in the Province of Ontario — a radical departure from traditional vocational rehabilitation. Our community began to see that there were possibilities out there for us. We began to have role models and leaders. We were achieving, breaking myths and assumptions about who and what we were, and we were forming community. Chronic psychiatric patients showed commitment in reporting to work on time. In acquiring new skills, lasting friendships were created and people grabbed every opportunity to learn from each other's experiences. We were successfully attacking the stigma within and without the mental health system where millions of dollars spent on elaborate advertising campaigns had failed.[162]

Several witnesses also pointed to the importance of learning from other communities that have had to confront issues relating to stigma and discrimination. Ms. Scheffer pointed to some of these in her testimony:

If we look to other groups who have suffered the effects of social stigma, like the gay and lesbian community or those with AIDS or cancer, they have successfully ended or minimized stigma by creating widespread change in attitudes.[163]

And Mr. Brian Rush, Research Scientist, Social Prevention and Health Policy, Centre for Addiction and Mental Health, noted in the same vein:

The mental health field could learn a lot from the developmental disability field and the kind of investment it might take to support people in the community, which would still save money in addition to providing people with dignity, respect and a choice to live in the community and not in psychiatric institutions.[164]

Ms. Shoush reminded the Committee that different communities will have their own distinctive approaches to helping individuals living with mental disorders, and that is therefore essential to adapt efforts to these varying realities. She told the Committee that:

Aboriginal communities would say that they have a different world view and that the community is the focus. They believe that the community unit deserves to be the focus of concern and that information to help the community be whole and well should be available and shared.[165]

3.4.1     The Need for a National Strategy

Although it is clear that there will not be a miracle solution to the problems of stigma and discrimination, and that efforts to reduce their impact will have to be carefully tailored to many different circumstances, several witnesses also insisted on the importance of having a national mental health strategy. Mr. Phil Upshall, President, Mood Disorder Society of Canada, put it this way:

The move towards a federal national strategy would be incredibly anti-stigmatizing. It would be a leadership model that would say to the rest of Canada, “This is something to which we need to pay attention.” It would say to the rest of the provincial premiers and their health ministers that this is something that we will finally take seriously.[166]

This view was supported by Dr. Blake Woodside, Chairman of the Board, Canadian Psychiatric Association, who told the Committee:

The first thing is to make mental health a public priority, so a declaration by the federal government that a national action plan for mental health was being developed would be a huge step in the right direction. Out of that would fall a wide variety of public educational activities that would help combat this discrimination and stigma.[167]

Witnesses also argued that it was important to modify the Canada Health Act so that it placed physical and mental illness on an equal footing. This is not the case today since, for example, the CHA explicitly excludes psychiatric hospitals from its purview. Thus, Dr. Sunil Patel, President, Canadian Medical Association, pointed out:

Simply put, how are we to overcome stigma and discrimination if we validate these sentiments in our federal legislation? The CMA firmly believes the development of a national strategy and action plan on mental health and mental illness is the single most important step that can be taken on this issue…[168]

The CMA proposed a number of measures that would redress this situation, including, as Dr. Patel outlined:

…amending the Canada Health Act to include psychiatric hospitals; adjusting the Canada Health transfer to provide for these additional insured services; re-establishing an adequately resourced federal organizational unit focused on mental illness and mental health and addictions;[169]

For his part, Dr. Paul Garfinkel, Chair, Mental Health Working Group, Ontario Hospital Association, and President and Chief Executive Officer, Centre for Addiction and Mental Health, stressed the enormous symbolic value of reforming the CHA:

I think changing the Canada Health Act would be hugely powerful from a symbolic point of view. It would be saying that we are correcting a wrong. We did not understand mental illnesses years ago and now we realize that they are like any other form of human pain and suffering. That would be dramatic.[170]

Mr. Service also insisted on the significance of not treating mental health, mental illness and addictions as if they were fundamentally different from other health issues:

If we conceive of mental health, mental illness and addictions as part of and central to the operations of the entire health system, we then make an extremely important structural change that brings mental illness into prime time as opposed to it being ghettoized over here with just the “crazy people” that nobody has to really deal with or the “worried well” for whom we have no time to deal with.[171]

Ms. Chambers stressed to the Committee that in order to assist individuals living with mental disorders to take full advantage of their rights, it was necessary also to provide specific resources at the national level. She told the Committee:

I would like to emphasize that hand-in-glove with the idea of educating people, it is important to have a national mental health legal advocacy resource that is accountable to consumers. It is not just prejudice in the general community, but particularly prejudice and discrimination in the mental health system itself — it is allowed under the law — that needs addressing. It is critical to have both those pieces involved.[172]

3.4.2    The Need for Policy Reform

In general, witnesses suggested that policy can be easier to change than attitudes, and that every effort should be made to do so. This is how Ms. Stuart put it:

We are hoping that a third generation of research may focus on the kinds of social structure that … really perpetuate social inequity and discrimination — the structures and organizations, the policies and the programs that make this happen. It is difficult to change attitudes but you can change policies much more easily.[173]

In this vein, Dr. Patel called for a “review of federal health policies and programs to ensure the mental illness is on par, in terms of benefits, with other chronic diseases and disabilities.”[174] Mr. Storey gave the following illustration of the kinds of change that he feels are needed:

A number of policy changes are required in addition to protecting the actual dollars for mental health. Medical billing schedules and procedures, extended health benefits, pension plans, et cetera, do not recognize the special features and challenges of mental illness and create unnecessary obstacles to recovery and health. For example, in British Columbia, a family doctor can bill for only four counselling sessions per patient per year; yet, most people with depression go to see their family doctor. Though antidepressant medication is a helpful adjunct, alone it is not sufficient to help people deal effectively with that sometimes debilitating condition. Doctors are not in a position to provide the help required for a person in a depression.[175]

Finally, the need to adjust policy to changing social circumstances was stressed by Ms. Capponi:

There are more mentally ill people on the streets not because of a preference, but because the gulf between the haves and have-nots is getting wider and wider. More people are using the food banks and so the share for the chronic mental patient has been dramatically reduced. A landlord will rent his house to people who he thinks will be less disruptive than a former mental health patient. People get squeezed out. Shelters prefer to house immigrants or battered women because they will not be seen as potentially disruptive.[176]

3.4.3    Addressing the Issue of Violence

However, many believe that the most likely reason for the increase in stigma in recent years is related to the exaggerated attribution of a propensity to commit acts of random violence to people living with serious mental illness. There is a perception that an increasing number of violent crimes are committed by individuals with severe psychiatric disorders.[177]

Witnesses suggested that a starting point for counteracting this exaggerated attribution of dangerousness to individuals living with mental disorders is to recognize what the best science tells us. Mr. Arnett summed up the essence of this for the Committee:

…there does appear to be some increased risk of violence from those with mental illnesses. It is wise to acknowledge that. This occurs particularly with those with severe mental illness and is magnified significantly when the individuals are also substance abusers.[178]

Because incidents of violence do occur, some authors believe that a reduction in stigma against people with mental illness is unlikely to take place until there has been a reduction in violent crimes committed by them.[179] They argue that it is necessary to avoid the kind of situation in which the average commuter riding a bus to work will face an anti-stigma poster proclaiming that “mentally ill persons make good neighbours” while simultaneously reading a newspaper article detailing the most recent violent act committed by a mentally ill person.

3.4.3    The Media and Efforts to Reduce Stigma and Discrimination

There are no ready-made strategies available for reducing inaccurate and stigmatizing portrayals of people with mental illnesses in the media, and for encouraging the media themselves to contribute actively to the destigmatization of mental illness.

One example of an initiative directed specifically at altering the portrayal of people with mental disorders in the media was a petition which criticized media coverage of mental illness signed by three thousand psychiatrists in Britain in April 1995. Among their proposals, they called for “a major debate to take place particularly within the media, within broadcasting and the press, to question the persistent replication of stigmatizing and false images of psychiatric illness.” They also encouraged “the making of programmes which give a fair and accurate account of mental health issues [and asked] that the broadcasting and print industries produce codes of conduct to guide journalists in this area.”[180]

In Australia a National Media Strategy was undertaken, where the government worked directly with the media to promote more positive messages about mental health and suicide prevention. The Australian media strategy operates in journalism schools and universities, where journalists are taught how they should approach these issues when reporting them to the community so as not to stigmatize individuals living with mental disorders.

Research also points to the importance of highlighting stories of successful recovery that, if they are presented properly, can both educate and entertain audiences. Some examples of positive media portrayal and discussion of mental health issues include:[181]

  • The September 2001 issue of Rosie magazine, which focused on depression.
  • The 1997 film As Good as It Gets, starring Jack Nicholson. In this film, Nicholson plays a romantic lead who has obsessive-compulsive disorder. The film accurately portrays the symptoms of this disorder and, even more encouragingly, shows the character, with the assistance of therapy and medication, winning the woman of his dreams and learning to live with and control his illness.
  • The television series Monk, which debuted in 2002. The main character is a private detective named Adrian Monk suffering from obsessive-compulsive disorder. Played by Tony Shalhoub, Monk is given a realistic and respectful treatment, according to the National Alliance for the Mentally Ill (NAMI).

The struggle for more accurate and positive representation of mental illness and of the mentally ill in the mass media is often thought to be analogous to the struggles of other minority and disenfranchised groups. In the opinion of Greg Philo of the Glasgow Media Group, “the media will not change until there is a movement that demands it.”[182]

3.5       COMMITTEE COMMENTARY

Overall, the evidence suggests that combating stigma and discrimination requires a multi-pronged effort. Any campaign to change attitudes will have to convey a complex message and be sustained over a long period of time, while rooting out the many forms of discrimination will require great determination and perseverance.

The Committee believes that there is a strong case to be made that each of the key phenomena, stigma and discrimination, must be tackled in appropriate ways. The battle can and must be waged on both fronts simultaneously. Campaigning and educating people to challenge stigmatizing attitudes should go hand in hand with resolute opposition to discrimination in whatever form it is perpetrated against individuals living with mental disorders. The Committee notes the success of other stigmatized groups in campaigning to reduce stigma and discrimination, and the real benefits this has yielded.

A number of key elements stand out from the testimony the Committee heard and the evidence it considered. First, the Committee sees much merit in the argument that the very fact of having a national mental health strategy (over and above the concrete elements of that strategy) will contribute to the struggle against stigma and discrimination. A national mental health strategy would focus public attention on mental health issues in unprecedented ways. Its adoption would indicate to people that the federal, provincial and territorial governments attach as much importance to fostering the mental health of Canadians and treating the mental illnesses that afflict them as they do to promoting the physical health of the population.

As part of establishing the parity of mental and physical health, and illness, the Committee took note of the suggestion that the Canada Health Act be opened to remove existing disparities. During its two-year study of the acute care sector, the Committee was wary of proposals to re-open the CHA because of the difficult debate that this would engender over which services should or should not come under the purview of the Act. However, with regard to this particular issue, the Committee feels that the option of modifying the CHA should be seriously examined, because of its potentially enormous symbolic value.[183]

Several elements stand out to the Committee as warranting inclusion in national efforts to reduce stigma and discrimination. First, it will be necessary to find ways of countering the attribution of an exaggerated propensity to violence to people living with serious mental illness. Second, efforts to reduce stigma and discrimination must be carefully targeted to maximize their effect. Moreover, the involvement of people living with mental disorders in the conception, design and delivery of these campaigns is essential to their success. It is also important to demonstrate the possibility of recovery and to promote better mental health in order to encourage changes in attitudes towards people living with mental illness. 

Finally, the Committee took note of the persistence of stigmatization and discrimination within the health care system in general, and even within the mental health care system itself. There are thus two levels at which it is necessary to work within the overall health care community. First, it is necessary to diminish the stigmatization of mental health workers within the broader health care community so that the structural discrimination that afflicts the mental health sector can be eradicated. Second, it is necessary to work with all health professionals to promote more positive perceptions of people living with mental illness.


[1]  Debates of the Senate (Hansard), 1st Session, 38th Parliament, Volume 142, Issue 7, October 2004.

[2]  In this report, the testimony received by witnesses printed in the Minutes of Proceedings and Evidence of the Standing Senate Committee on Social Affairs, Science and Technology will be hereinafter referred to only by issue number and page number within the text.

[3]  Loïse (9:19).

[4]  Ibid.

[5]  Loïse (9:19-20).

[6]  Loïse (9:20).

[7]  Loïse (9:27).

[8]  Ronald (9:20).

[9]  Ronald (9:20-21).

[10] Ronald (9:21).

[11] Ronald (9:21).

[12] Ronald (9:22).

[13] Ronald (9:30).

[14] Ronald (9:22-23).

[15] Ronald (9:36).

[16] Ronald (9:22).

[17] Murray (9:14).

[18] Murray (9:15).

[19] Murray (9:16).

[20] Murray (9:15-16).

[21] Murray (9:18).

[22] Murray (9:28).

[23] Murray (9:28-29).

[24] Murray (9:17).

[25] Ibid.

[26] David (9:6).

[27] Ibid.

[28] David (9:8-9).

[29] David (9:9).

[30] David (9:23-24).

[31] David (9:12).

[32] David (9:6).

[33] David (9:11).

[34] David (9:12).

[35] David (9:13).

[36] David (9:37-38).

[37] Letter from John, no date.

[38] Letter from Tara, 28 November 2003.

[39] As reported by Pat Capponi, Brief to the Committee, April 2004, p. 2.

[40] Pat Capponi (7:49).

[41] Ibid.

[42] Pat Capponi (7:70).

[43] Julio Arboleda-Florez, (11:69).

[44] Fax from Margaret, April 28, 2004.

[45] Alzheimer Society of Canada, Brief to the Committee, 4 June 2003.

[46] Letter from Tara, 28 November 2003.

[47] Ibid.

[48] Phil Upshall (9:30).

[49] Letter from Amy, 3 October 2003.

[50] Letter from unidentified woman, February 2003.

[51] Letter from Irene, 7 avril 2003.

[52] Pam Massad (13:7).

[53] E-mail from Andrew, 25 August 2004.

[54] Diane Yackel (6:47).

[55] Diane Yackel (6:46).

[56] Canadian Mental Health Association, Brief to the Committee, June 2003.

[57] Dr Cornelia Wieman (9:53).

[58] Ibid.

[59] Tom Lips, Health Canada (11:25).

[60] Diane Sacks (13:53).

[61] Diane Sacks (13:51).

[62] Sam Mikail and John Service, Presentation to the Commission on the Future of Health Care in Canada, Ontario Psychological Association, 11 April 11 2002.

[63] Dr. Cornelia Wieman (9:54).

[64] Dr. Diane Sacks, President-Elect, Canadian Paediatric Society, Brief to the Committee, May 2003, p. 1.

[65] Dr. Michel Maziade (14:32).

[66] According to information from http://www.heretohelp.bc.ca/.

[67] Pat Capponi (7:48).

[68] Bernard Groulx, Brief on Psychiatric Care at Ste. Anne’s Veterans Hospital, provided to the Committee on 7 May 2003.

[69] Sarah Tyrrell, Nurses – Always There For You: Caring For Families, Veterans Affairs Canada, 2002.

[70] Françoise Bouchard, Director General, Health Services, Correctional Service Canada (7:53).

[71] Françoise Bouchard (7:54).

[72] Dr. Cornelia Wieman (9:55).

[73] Second Session, 15:10.

[74] Second Session, 16:3.

[75] Bruce G. Link and Jo C. Phelan, “On Stigma and its Public Health Implications,” Background Paper, National Institute of Health Stigma Conference.

[76] Peter Byrne, “Stigma of mental illness and ways of diminishing it,” Advances in Psychiatric Treatment (2000) Vol. 6, p. 65.

[77] Patrick Corrigan and Robert Lundin, Don’t Call Me Nuts, Recovery Press, 2001.

[78] Second Session, 16:10.

[79] Second Session, 15:27.

[80] Second Session, 11:70.

[81] Amy C. Watson and Patrick W. Corrigan, “The Impact of Stigma on Service Access and Participation,” a guideline developed for the Behavioural Health Management Project.

[82] Byrne (2000), op. cit.

[83] Second Session, 16:16.

[84] Link and Phelan, op. cit. Also, Keith Brunton, “Stigma,” in the Journal of Advanced Nursing, No. 26, 1997.

[85] Third Session, 7:49.

[86] Public Perceptions of Mental Illness: A report to the Mental Health Association of Greater Houston by Stephen L. Klineberg, Ph.d., Rice University (June 2004).

[87] Ibid., p. 27.

[88] Ibid., p. 28.

[89] Bruce G. Link, Elmer L. Struening, Sheree Neese-Todd, Sara Asmussen, Jo C. Phelan, “The Consequences of Stigma for the Self-Esteem of People With Mental Illnesses,” Psychiatric Services, Vol. 51, No. 12, December 2001.

[90] Corrigan and Lundin, op. cit.

[91] Ibid.

[92] Second Session, 16:20.

[93] Watson and Corrigan, op. cit.

[94] Second Session, 16:19.

[95] Third Session, 6:55.

[96]    Brief to the Committee, May 14, 2003, p.3.

[97]    Mental Health: A Report of the Surgeon General of the United States, 1999. Also, Paul E. Garfinkel and David S. Goldbloom, “Mental health — getting beyond stigma and categories,” Bulletin of the World Health Organization, 2000.

[98]    Brief to the Committee, May 28, 2003, p. 3.

[99]    Second Session, 16:7.

[100]   Discrimination Against People with Mental Illnesses and their Families: Changing Attitudes, Opening Minds, A Report of the BC Minister of Health’s Advisory Council on Mental Health, April 2002.

[101]   Corrigan and Lundin, op. cit.

[102]   Sampson, Stephanie “Countering the Stigma of Mental Illness”, online newsletter of the Anxiety Disorders Association of America (ADAA), May-June 2002. Accessed on March 11, 2004 at http://www.adaa.org/aboutADAA/newsletter/2002_stigma.htm.

[103]   Scott  Simmie, The Last Taboo (Toronto: McClelland & Stewart, 2001) p. 304.

[104]   Wilson, Claire, Raymond Nairn, John Coverdale and Aroha Panapa, “How Mental Illness is Portrayed in Children’s Television” British Journal of Psychiatry (2000) 176, p. 442.

[105]   Dara Roth Edney, “Mass Media and Mental Illness: A Literature Review” (Canadian Mental Health Association, Ontario Division, 2004) p. 3.

[106]   Scott Simmie Out of Mind: An Investigation Into Mental Health (Torionto: Atkinson Charitable Foundation, 1999) p. 65.

[107] Sampson, op. cit.

[108] Surgeon General, ibid.

[109] Julio Arboleda-Florez, Heather L. Holley, and Annette Crisanti Mental Illness  and Violence: Proof or Stereotype, Health Canada, 1996, p. x.

[110] Simmie, op. cit., p. 49.

[111] Ibid.

[112] Second Session, 16:21.

[113] Second Session, 16:16.

[114]   Second Session, 15:14.

[115]   Greg Philo, “Changing Images of Mental Distress” Chapter 4 of Media And Mental Distress, edited  by Greg Philo (Longman: 1996),  accessed at http://www.gla.ac.uk/Acad/Sociology/mental.htm on March 11, 2004.

[116]   Ibid.

[117] Ibid., p. 5.

[118] Second Session, 14:29.

[119] Second Session, 14:124.

[120] Second Session, 17:15.

[121]   Second Session, 15:10.

[122]   Second Session, 15:6.

[123]   Mr. Service is referring to Patrick Kennedy, the youngest of three children of Senator Edward M. Kennedy, who has represented the First Congressional District of Rhode Island since 1994.

[124]   Third Session, 5:38.

[125]   B.C. Report, op. cit.

[126] Link and Phelan, op. cit.

[127] Second Session, 15:27.

[128] Corrigan and Lundin, op. cit.

[129] B.C. Report, op. cit.

[130] See Chapter 6, below.

[131] B.C. Report, op. cit.

[132] Ibid.

[133] Ibid.

[134] Second Session, 15:24.

[135] Second Session, 15:6.

[136] Third Session, 7:18.

[137] Third Session, 7:51.

[138]   The study was conducted in 1991 by Link, Mirotznik and Cullen and reported on by Keith Brunton in his article “Stigma,” op. cit., p. 894.

[139]   Surgeon General, op. cit.

[140]   B.C. Report, op. cit.

[141] Surgeon General, op. cit.

[142] Arthur H. Crisp, Michael, G. Gelder, Susannah Rix, Howard I. Meltzer and Olwen J. Rowlands, “Stigmatisation of people with mental illness,” Royal College of Psychiatrists, 2000.

[143] Rahman Haghighat, “A unitary theory of stigmatization,” British Journal of Psychiatry, No. 178, 2001.

[144] Heather Stuart and Julio Arboleda-Flôrez, “Community Attitudes Toward People With Schizophrenia,” Canadian Journal of Psychiatry, No. 46, 2001.

[145] Second Session, 15:12.

[146] Peter Byrne, “Psychiatric Stigma,” British Journal of Psychiatry, No. 178, 2001.

[147] Second Session, 15:12.

[148]   Vanessa Pinfold, Hilary Toulmin, Graham Thornicroft, Peter Huxley, Paul Farmer and Tanya Graham, “Reducing psychiatric stigma and discrimination: evaluation of educational interventions in UK secondary schools” in the British Journal of Psychiatry (2003), 182, p. 344.

[149]   Vanessa Pinfold, P. Huxley, G. Thornicroft, P. Farmer, H. Toulmin, and T. Graham, “Reducing psychiatric stigma and discrimination: Evaluating an educational intervention with the police force in England,” Journal of Social Psychiatry and Psychiatric Epidemiology (2003) 38, p. 343.

[150]   Sampson, op cit.

[151]   Haghighat, op. cit.

[152]   Second Session, 15:24.

[153]   Watson and Corrigan, op. cit.

[154]   Second Session, 16:21.

[155]   Op. cit., pp. 20-22.

[156]   Rebecca R. Reinke, Patrick W. Corrigan, Christoph Leonhard, Robert K. Lundin and Mary Anne Kubiak, “Examining Media’s Use of Contact on the Stigma of Mental Illness,” unpublished manuscript (n.d.), submitted to the Journal of Nervous and Mental Disease.

[157]   bid., p. 10.

[158] Ibid., p. 11.

[159] Second Session, 16:21.

[160] Third Session, 5:48.

[161] Second Session, 15:16-17.

[162] Third Session, 7:48.

[163] Second Session, 16:20.

[164] Third Session, 8:28.

[165] Second Session, 16:26.

[166] Third Session, 9:34.

[167] Third Session, 5:26-27.

[168] Third Session, 5:11

[169] Ibid.

[170] Third Session, 5:32.

[171] Third Session, 5:37.

[172] Second Session, 15:26.

[173] Second Session, 15:10.

[174] Third Session, 5:11.

[175]   Second Session, 15:7.

[176]   Third Session, 7:70.

[177]   Treatment Advocacy Center, “Briefing Paper on Stigma and Violence,” accessed at: http://www.psychlaws.org/BriefingPapers/BP9.htm.

[178]   Second Session, 16:8.

[179] Ibid.

[180] Philo, op. cit.

[181] Roth Edney, op. cit., p. 9.

[182] Ibid.

[183] These issues are discussed in greater detail in Chapter 10, below.


Top of document

<%ParlWebsiteContext.RenderFooter()%>