Article: Human Rights vs. BC's Mental Health Act
This article was written by Kendra Milne, and originally appeared in the edition of DABC’s Transition magazine, Dying for Health Care: Navigating An Ableist System (Fall/Winter 2022). Read the issue here.
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Mental health advocates in BC have been sounding the alarm for decades: our Mental Health Act is one of the most archaic and discriminatory pieces of our ableist health care system.
Ableism plays out in mental health law and policy by reinforcing ideas that there are certain “normal” ways of thinking, interacting and participating in community. These ideas often reflect colonial and neurotypical lenses on the world.
BC’s Mental Health Act sets out when you can be admitted to hospital and treated for what the Act calls a “mental disorder” because either you ask for that care or because you are being detained and involuntarily treated.
The Act views and treats mental health issues as moral failings that can be disciplined out of people.
This law impacts people diagnosed with mental illness, brain injuries, dementia, substance-use-related health issues, and many other disabilities or health conditions.
The Act was passed in 1964 and many portions of it are the same today.
Every patient is subject to the direction and discipline of the facility staff. They can be confined in solitarily seclusion rooms, restrained to their beds, or otherwise punished during their time in hospital. There are no limits and no review on when, how or why someone can be subject to these restraints.
This is still true, even though a 2021 investigation into the Mental Health Act, by the Representative for Children and Youth, concluded there should be strict limits on restraints.
When any citizen accesses health care, the law protects our right to make our own health care consent decisions. If we are incapable of understanding and making a health care decision, the law protects our right to have the people who know us best make the decision.
That is, unless you are involuntarily committed under the Mental Health Act–then you have no such rights. All involuntary patients can be given any form of psychiatric treatment without consent and supporters are excluded from decision-making.
Other countries have acknowledged the need to modernize their mental health laws and have taken action. For example, Victoria, Australia’s recently tabled new Mental Health Act, rooted in human rights, ensures Indigenous people receive culturally safe services and establishes adequate oversight. The UK also commissioned an independent review recognizing that its mental health law entrenched systemic racism, and relied heavily on coercion.
There is growing evidence that our Mental Health Act is not serving BC well, and needs to be modernized to protect human rights and well-being. Emerging investigations from independent offices, and compelling stories from people and their families with experience of the mental health system, all point to the same conclusion.
BC needs an independent review of the Mental Health Act to create reforms that respect human rights, promote evidence-based care, and build in oversight from an independent provincial Mental Health Advocate.
Kendra Milne is a lawyer and Executive Director of Health Justice. Learn more at https://www.healthjustice.ca.
Article: I'm Fighting to Live, But...
This article was written by Madeline, and originally appeared in DABC’s Transition magazine on Dying for Health Care: Navigating an Ableist System (Fall/Winter 2022). Read the issue here.
My name is Madeline. I’d like to tell you how and why I find myself at a place where I’ve applied for and been accepted for Medical Assistance in Dying (MAID).
The lack of financial support for the health care I need is driving me to a preventable slow, excruciatingly painful and isolated death.
I’m not using my real name because my medical team advised me that my health is so fragile that public scrutiny and pressure could kill me. The energy I’m using to write this article is costing me dearly. But, if I don’t tell my story, I don’t have a chance at survival.
My Life So Far
For four decades, I’ve lived with post viral syndrome which requires a range of essential treatments–none of which are covered under BC’s Medical Services Plan (MSP) because the disease has been virtually ignored in medical research.
Over the years, I did my own extensive research and found treatments that helped. I have been able to pay for some myself through a combination of the Persons with Disabilities (PWD) benefit, accumulating massive personal debt and donations through a GoFundMe page. But these minimal treatments were just enough to keep me alive. I continued to deteriorate.
The donations are going to run out very soon. The treatments will stop and I will die.
Let me be clear: I want to live.
Since my disease disabled me 25 years ago, I’ve appealed to MSP, the Ministry of Health, the Ministry of Social Development and Poverty Reduction, my MLA and my MP.
One of the problems I’ve faced–on top of the devastating nature of my illnesses–is the gender bias in medical research. Because most of my diseases affect women more than men, they have not been given proper attention, legitimacy and funding. The result is a lack of coverage for my life-saving treatments.
This bias has ensured my deterioration to the point where I face an early–and avoidable–death. It will be slow and brutal. I’ll be unable to move, speak or eat–trapped and isolated, in a poverty-level care home.
Given this reality, I applied for MAID and was approved in the spring of 2021.
Disability and Poverty
How can this be the only choice left to me and people with conditions like mine?
It begins with the financial and health-related supports for people receiving PWD which don’t come close to covering the costs of living with disability. BC’s PWD rates are far below Canada’s poverty line. Add to this all of the extra costs of living with disability and we inevitably fall further and further into poverty.
Then, twenty years ago, the BC government cancelled coverage for critical treatments that helped me, like physiotherapy and naturopathy. At the time, I was in a self-employment program for people with disabilities. I paid for my treatments on credit, but the debt I started to accumulate was crushing. I had to end treatment, my condition deteriorated and I couldn’t continue the program.
In my situation, denial of support for my treatments has been not only inhumane, but fiscally irresponsible. If my disease had been properly diagnosed, managed and treated 20 years ago, the government would have saved money. Now, the financial cost to turn around my deterioration will be massive–if it is even possible. And, if some treatments had been covered by MSP, I may have been well enough to work and pay for additional treatments myself.
When I did my first news story, I was warned by an advocate that the government might retaliate. While I am grateful that didn’t happen, someone with experience actually thought it might.
This is why some people with disabilities who receive income assistance are afraid to use the laws that are meant to protect us. So, nothing changes–unless people with some power speak up.
When health supports were cut 20 years ago, one podiatrist kicked up a fuss for his PWD patients who lost coverage for orthotics. He was able to have coverage reinstated.
If just one committed doctor could do this, can you imagine what could change if physicians spoke up collectively? One part of my post viral syndrome, Myalgic Encephalomyelitis (ME), receives just $280,000 a year in research funding–a fraction of funding devoted to other diseases like MS and Parkinson’s.
So, I ask the politicians, the medical community and the general public, “Where have you been? Where are you now?” What is happening to me can happen to anyone, especially with the onset of long COVID affecting 10% of those who have had the virus.
There was a small flicker of hope this summer from BC’s Select Standing Committee on Finance and Government Services. The Committee put forward a recommendation for next year’s provincial budget to create billing codes for ME. This would mean that doctors could recommend treatments for ME patients that would be covered under MSP.
This would be a huge step forward for this misunderstood, under-diagnosed illness. However, even if the recommendation is accepted, the changes will come too late for me.
But none of this says who I am. Maybe a poem a family member wrote when I was little sums it up.
“My child dances like a feather, always singing all the time.
Runs outside in snowy weather, cold and snow she thinks are fine.
If we’re sometimes not together, always she’s My Valentine.”
I’ll say it one last time: I want to live.
You can learn more about Madeline and support her at: https://www.gofundme.com/f/MadelinesMiracle
Article - The Most Personal Choice: Defining Self
This editorial was written by Jason Schreurs, and originally appeared in DABC’s Transition magazine on Respecting Disability Language and Identity. (Summer 2022). Read the issue here.
My name is Jason and I live with bipolar. I didn’t say, “I’m bipolar” or “I have bipolar.” I also didn’t use the word “disorder” or “illness.” I choose to say I “live with” my condition: “bipolar.”
This is my personal preference and I would never judge anyone else on theirs. I’m not alone in the disability community questioning the language that I use and how it helps to form my identity. It’s a fascinating and important discussion.
What I’ve Learned as a Group Facilitator
As a support group facilitator for the past two years, I’ve seen that many people living with disabilities use many different ways to describe themselves.
Some use terms that detach them from their condition. They want to say they’re not defined by something that’s beyond their control. They didn’t ask for it, it’s not who they are. They’re not ill, disordered or diseased.
People in another camp, just as validly and just as passionately, want to acknowledge their illness for the many ways it affects them. For them, terms like “illness” and “disorder” validate the struggles they face in day-to-day functioning, while softer terms like “health issue” or “health condition” minimize those struggles.
Much of the disability community has moved toward first-person language that emphasizes the person, not the disability, and how disability is just one aspect of who they are. Others argue that this can discredit a person’s lived experience.
“I want [people] to know I have a diagnosed illness and not a general health issue,” says Jennifer Ann de la Torre, who has schizoaffective disorder. “An illness means I require special accommodations, as well as empathy, compassion and sensitivity.”
Isha Sharma has diagnoses of bipolar disorder, obsessive compulsive disorder and borderline personality disorder. She reflects on why she has come to refer to herself as someone who “has” or “lives” with disabilities.
“It took a couple of years of therapy and consistent work on myself to understand and accept that I can live a life that is healthy. Language has been an important part of that,” says Sharma. “Being kind to myself has never been easy, but I am working on it, and saying ‘I have a condition’ versus ‘I am a condition’ makes a massive difference.”
My Own Questions About Language
I often wonder if I’m downplaying my own diagnosis by telling people I have a health condition, rather than an illness. As an advocate for mental health, I can see both sides of the issue.
While normalized language may help some people to accept me for who I am, a more immediate form of advocacy would be to raise awareness about how illness affects me and people with other conditions–and what our communities and services can do to support us.
I know that how people with disabilities self-identify is not a closed issue. How we use language around disability to formulate our identities is a fluid process, and that’s okay.
Courtenay McLeod has been living with bipolar for 21 years and would like to see more acceptance around people’s choice to use whatever language empowers them.
“There is no universal ‘one size fits all’ when it comes to articulating your own experience,” she says. “Being open-minded and understanding how personal conditions can be—and how that may affect the language [we] use—needs to be accepted.”
Even as I type words like “condition” to describe what I live with, I know others out there are at their own desks typing words like “illness” to define their own experiences.
“I don’t care how other people say it,” says Michael Frenette, who has a mental disability. “I’m not a language police officer, and I don’t believe anyone should be. My personal struggles do not take priority over other people’s lives and truths, and most people who are not informed only want to learn.”
Jason Schreurs is a music and mental health writer, host of the internationally renowned Scream Therapy podcast, and self- proclaimed punk weirdo.