While this is Mental Health Week, May 24 is national schizophrenia awareness day in Canada, and if a disease ever deserved a day, it is schizophrenia. Don't get me wrong, I'm not suggesting that it deserves more attention than any other chronic illness; all are devastating to victims, and their families. But only schizophrenia is a disease that is burdened with discrimination; not stigma -- discrimination.
Here's an example, my mother spent a number of years in a nursing home with dementia, and made periodic trips to hospitals for acute illnesses. In all those years, I never had a problem with staff discussing her ongoing care with me. In fact, one of my complaints was that the nursing home continually called me to see if I had any problems. I never did.
When my wife had what we considered less than exemplary care during a knee replacement, hospital staff had no difficulty discussing concerns with me.
But, when it came to my son, and his mental health team, no one would talk to me (other than his psychiatrist) about my concerns over what I saw as poor service. My son is an adult, and therefore his privacy was deemed confidential by the team. What is the difference between a mother, a spouse, and a son? The illness. Confidentiality was not cited with my mother, or my wife.
In fact, Sandra Yuen MacKay who wrote My Schizophrenic Life: The Road to Recovery From Mental Illness, told CBC Radio in Vancouver that for her last hospitalization, staff would not discuss her ongoing care with her husband. Why not? The mothers who appeared on the TV Ontario show The Agenda to discuss mental illness in the family in early May, all said the same thing. They had problems discussing care with the health teams.
In my opinion, this constitutes discrimination.
And from some of my personal experience, it seems a lot of people think it's okay to make fun of people with schizophrenia. On February 13, I was driving home from the theatre, and the DJ on radio told what he thought was a funny Valentine's Day poem. It went something like this:
Roses are Red
Violets are Blue
And So am I.
Another example is from when I went to see Billy Crystal's one man show 700 Sundays a few years ago. While discussing his mother's death, he threw in a demeaning comment about schizophrenia, and everyone laughed. As I recall, his mother did the billing for a mental health agency, and he said that she charged schizophrenics twice. Surely someone as clever as Crystal did not need to stoop to those lows.
Why is it acceptable to make fun of people with a severe disease of the brain? When was the last time you saw someone demeaning those with cerebral palsy, or those with who are intellectually challenged? Only a few years ago, they were referred to as being mentally retarded, but that is no longer a politically correct description. Before the term retardation, they were called idiots, imbeciles, and morons which were very specific medical terms depending upon their level of functioning.
Why is it okay to demean those with schizophrenia but it is not all right to do that for those with other diseases?
Michael Kirby, the former chair of the Mental Health Commission of Canada, has set up a new organization called Partners for Mental Health and he wants to form a grass roots movement that will demand change, and improvement. It is an excellent idea, but he does seem to leave schizophrenia out. The policy areas he mentions that require influencing are these: To make a difference in the lives of youth, and children in Canada; to lend one's voice to ensure safe, and healthy workplaces; to help raise awareness, and influence improvement in mental healthcare for seniors; to support the availability and accessibility of peer support programs. But where is schizophrenia, or other serious mental illnesses?
We need people involved with schizophrenia to be more involved and more demanding. As a medical writer, I once attended an international science conference on HIV/AIDs. Much to my surprise, a significant number of the participants were activists demanding greater research. They were all very vociferous, and highly knowledgeable. And we know how far treatment for HIV has come in a very short period of time.
In an article about the current status of schizophrenia, Thomas Insel of the National Institute of Mental Health in the US, states "in 1988, in the height of the AIDS epidemic, the editor of Nature noted that "schizophrenia is arguably the worst disease affecting mankind, even AIDS not excepted." Now, being HIV positive is a chronic condition more than it is a death sentence. Insel noted in his review, "a century ago we had large public institutions for serious mental illness, tuberculosis and leprosy. Of these three, today only mental illness, especially schizophrenia, remains unchanged in prevalence and disability."
I observed a similar advocacy phenomenon at the annual San Antonio Breast Cancer Symposium. Many of the delegates were either breast cancer survivors, or advocates sitting in on the scientific workshops with oncology specialists, and researchers. I only once encountered an advocate for serious mental illnesses at an annual American Psychiatric Association conference. The result was not positive.
At one of the workshops at the conference, the final speaker was the head of the Depression and Bipolar Support Association. When she got up to speak, a significant number of psychiatrists walked out. Even though she berated them with "You'd have no career if it weren't for us," she wound up speaking to a much smaller audience
So much for the receptiveness of mental health professionals towards those of us who advocate. We need to do more, and we need to provide those who are interested with educational tools. As a beginning, I would suggest any, or all of the must read books on schizophrenia as listed by the award winning mental health website, Healthy Place. Interesting, too, in that it is headed by a San Antonio psychiatrist. Their list of must read books can be found here.