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.

Being Silenced

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.

Last Thoughts

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.

Editorial: By Lauren Stinson

This editiorial was written by Lauren Stinson, and originally appeared in DABC’s Transition magazine on Respecting Disability Language and Identity. (Summer 2022). Read the issue here.

---

Gaining ownership over the language within our community is a crucial step toward creating agency over our identities and our narratives as individuals.

But, I’ve found that the discussion around disability and language is sometimes seen as taboo, so the complexity that surrounds it isn’t explored as much as I think it should be.

There are many types of disabilities, from visible to invisible, mental to physical, and the way people choose to express their identity is incredibly varied. There is no right or wrong way for that expression. A person’s disabled identity is unique to them and chosen by them.

The history of the language we use around disability was created by doctors and the medical model, not the disabled community itself. Many of us feel it’s of utmost importance that disabled people reclaim or create new language that speaks for us and not about us.

Doctors have historically been seen as the experts on the disabled experience with the unsurprising result that the disabled community has been objectified by language that focused on medical care and “fixing” the individual. Disability was not seen as a natural phenomenon or just part of human experience. Instead, the language focused on disability as negative—something to be cured.

Reclaiming and Recreating Language
There are two major divides in the language landscape about “disability.” One group wants to reclaim the word “disability.” The other wants to replace it with new language. Both groups want the same thing: power over their own identity as members of the disabled community. You can read more about these language choices on page 17.

I use “identity-first” language and will use it throughout this piece. I identify as a disabled person. I also identify as a proud cripple.

Through personal acts of reclaiming and recreating language, we take pride in our own identity as disabled people. This is actually quite a radical act. It’s in direct defiance of society’s dominating views on disability.

Taking pride in your disabled identity disrupts the idea that being “able-bodied” or doing things the “able-bodied” way is the ideal. This creates an opportunity to redefine how disabled people can function and take part in society.

Having pride in your disability makes disability visible, instead of something to hide or ignore. And, with visibility, comes the opportunity to create fundamental change.

Taking pride in your disabled identity allows you to fully accept yourself and to no longer see your disability in a negative way. Disability becomes an aspect of what makes you who you are as a person. Language plays a crucial role in building the self-love and acceptance that are essential for living a healthy and fulfilled life as a disabled person.

My Own Evolution
As a child with a disability, I wanted to be what society saw as “normal,” but I did not fit into the box of perceived normalcy.

I never embraced or thought much about my “disabled identity.” It was just something that was there and often needed to be dealt with in a practical way.

It was not until I went to university, where I studied disability issues more closely and experimented with language, that I began to explore my disabled identity more deeply–academically and socially.

I was intrigued by the Cripple Punk movement that appeared on Tumblr during my undergrad in 2014. Cripple Punk defied society’s notions of what disability was and could be.

I tried it out! I enjoyed the fact that I could use the word “cripple” to describe myself and able-bodied people could not. It gave me power and control over my identity as a disabled individual that I had never experienced before. It gave me the mental space to become more accepting of and embrace the disabled part of myself.

I wanted to share this new empowering language with disabled friends, so I created Cripple Crew hats for us to wear (please see How Cripple Punk Changed My Life on page 16).

I remember talking about creating these hats with an able-bodied co-worker who warned me that they would be seen in a negative light. I ignored their advice and said, “Just watch me.”

It didn’t concern me too much whether my expression would make able-bodied people uncomfortable. The Cripple Crew hats were not about how they perceived me. The hats were meant to shatter able-bodied perceptions and help broaden the discussion around disability and language. I had the power over my own narrative around my disability. That is what mattered most to me.

Embracing Language Diversity
By reclaiming or creating a new language around disability and the disabled narrative, we can learn to embrace the differences that exist within the larger disability community.

Our varied perspectives can all contribute to creating fundamental changes in shared oppressive systems. After all, the disability community is the largest minority group in the world, making up 15–17 percent of the population–and almost a quarter of British Columbians identify as having a disability. If we can promote the range of positive expressions of our disabled identities through language, we can create solidarity in our community and work toward social change.

I hope that this Transition will be part of the forward-looking discussions around individual expressions of disability and identity. Language is constantly evolving and changing, mirroring the process of discovering your own identity.

Regardless of how you identify, being proud and accepting of who you are is truly beautiful.

Lauren Stinson is a Community Advocate with the Access RDSP Program at DABC.