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.
This article was written by Rowan Burdge, and originally appeared in DABC’s Transition magazine on Respecting Disability Language and Identity. (Summer 2022). Read the issue here.
When it comes to talking about bodies, I’ve found that language is challenging and nuanced.
As someone living with a chronic illness, the line between disabled and non-disabled is not always clear. I’ve struggled with how to identify and describe myself, and it’s changed over time.
When I first became disabled, I absolutely did not use disability language because it did not seem appropriate, even though I was on life-sustaining therapy. I assumed “disabled” referred only to specific disabilities, not illness, or any kind of cultural or political identity.
I was worried I wasn’t “disabled enough.”
Trying to navigate jobs, school, friendships and communities as someone who has a chronic illness is not easy. We tend to think of disability as a static, unchanging, binary category, but to me it just isn’t.
My disability, and the way the external world treats it (and me) is dynamic. It’s ever-transforming and in movement on a spectrum of wellness far more subtle than “disabled” vs. “non-disabled.”
A Disabling World
My experiences of ableism, and the stigma around illness and disability, have taught me that trying to express the challenges of chronically ill life is sometimes as complex as the actual medical challenges themselves.
My body is not a problem. The way the world treats and defines me and my disability, and the ridiculously expensive medical bills, are the actively disabling parts of my disease. I experience ableism that disables me which is why I now claim the word “disabled.”
One of the terms I use for myself is “spoonie.” For lots of us spoonies, disability is interwoven into our lives. Spoon theory (coined by Christine Miserandino) is a less binary way of understanding disability.
It’s a shorthand way to say I’m having a bad day or need extra support, without having to medically explain.
If I’m drained, I’m low spoons. I can say, “sorry, out of spoons” or “my spoons are low, so I’ll be leaving early” to help navigate my access needs and quickly explain my wellness/energy levels. I’ve noticed even non-disabled people who have low capacity for other explanations can identify with and easily understand this language.
Are Our Needs “Special”?
I see a lot of people use terms like “special needs” or “special abilities.” In my opinion, these expressions add a layer of confusion.
My pancreas doesn’t work. It means that one of my regular needs is to inject insulin–that’s just a part of my norm. It’s not “special.”
When we frame needs as special, it makes it seem exceptional to require different needs from other bodies, even though all bodies are unique and require different supports.
Disability is a normal part of life, but ableism has undermined that normality.
Finding Your Unique Identity
There is a lot of debate about person-first (person with a disability) vs. identity first (disabled person) language.
One part of the debate is how ableism teaches us to be ashamed of disability. I’ve spent a lot of time unpacking this and unlearning that shame.
For me, person-first language locates the disability in the individual, whereas I see disability as a cultural, shared experience of lives which are valuable, unique, brilliant and a part of diverse human experiences. Disability has also become a part of my political identity and how I move through the world. I’m proud of my disabled experiences and identity.
Now, I use the word disabled to indicate this pride in the collective experience of non-normative ways of being in the world.
Other language I love and am growing into more is “crip.” I see cripping as a verb — a way of cripping things up, unsettling, de-norming and adding that extra flair that only disabled folks can pull off. Crip and mad folks (see the box on this page) that I know are creative and resourceful, and some are downright hilarious.
There is a softness, tenderness, and solidarity in the community care I feel with other spoonies, crips, mad folks, disabled folks and wider disability (justice) spaces.
I’m also growing into the language of cyborg, but I’m still grappling with that. One of my human organs (pancreas) is replaced by a beeping plastic machine (my insulin pump). I find it fascinating to think about the implications of having a mechanical body part. What a wild thing–that a small part of me is robotic.
It’s an Important Conversation
Everyone’s experience is different and individuals have their own creative language for how they describe themselves. For me, it isn’t insulting to be called disabled, it’s just a fact.
My illness is part of my everyday life and my identity. It is always a relief to spend time with other people with non-normative body-minds, be it sick/disabled/spoonie folks, trans and gender non-conforming people, people who live with chronic pain or poor folks who understand there are complicated barriers that people can’t see until you are in a position where you require access.
People deserve to be humanized, respected and cared for, regardless of disabilities. Using the appropriate and chosen language of each person is such a simple way of doing this. If you don’t know, ask what words people prefer!
Disability, illness and impairments are part of human life — and most of us at some point will grapple with them, whether in temporary form, acquired disability, age-related changes or as ongoing integrated parts of our lives.
De-stigmatizing disabled language helps de-stigmatize disability itself and gives us more tools to talk about it.
The Mad Pride movement began in 1993 in Toronto.
Mad Pride believes and advocates that people with mental illness should be proud of their “mad” identity. “Mad folks” is used by some to self-identify with pride.
Activists want to reclaim this term and others, and use them in a positive, empowering way.
Rowan (she/they) is a white settler on traditional, ancestral and unceded xʷməθkʷiy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səlilwətaʔɬ (Tsleil-Waututh) territories, home of the Hul’q’umi’num’ speaking peoples. A queer, chronically ill and disabled advocate and organizer, Rowan is passionate about disability justice, equity, land back and queer liberation. They currently work as the Provincial Director with the BC Poverty Reduction Coalition.
This article was written by Michael Todaro, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.
In the year that I was applying for my Persons with Disabilities (PWD) designation, I have to admit I did a lot of soul-searching.
I knew I wouldn’t be taken seriously. Apparently, I looked great, as people never stopped telling me.
”You don’t know how good you have it,” said one friend, and others told me it was “all in my head.”
The reality was I was lethargic, could barely walk or talk most days and, as a rule, I didn’t sleep. My pain levels were unbelievably high day and night. I was 20 pounds underweight, anxious, depressed and suffering from post-traumatic stress. The circles under my eyes were permanent and made me look like an unimpressed raccoon. I was dizzy all day long.
On the day of my appointment with the doctor who would evaluate me for PWD, I got dressed and tried to look my best. I had been taught that if you wanted to be taken seriously, you have to dress well, so I was determined to make the best impression I could.
Are you laughing yet?
Because my pain levels were so high that day, it took me three hours to get ready. The morning routine for a person living with chronic health issues can be debilitating. Taking a shower, washing hair, getting dressed— all of these things take time and energy and, when you have neither and are in chronic pain, it makes for a rough day.
On this day, I was proud of myself because, despite wave after wave of pain, I was able to get it together and even looked pretty good to boot! In retrospect, I guess I looked too good. “Dressing for success” clearly doesn’t work if, as a result, the doctor thinks you are faking your disability.
When I arrived at the doctor’s office, instead of his usual friendly self, he scowled at me from behind his desk. I waited, watching this change in his demeanour.
After staring at me a few minutes, he said in a rage, “How dare you come into my office looking that good and expect me to help you with your disability application!”
In spite of being a well-educated doctor who had treated me for 14 months, he thought I looked too good to have a disability. To be honest, I had not been interested before in displaying my disability. I had kept it hidden. So he was surprised when I stopped hiding it.
His behaviour was pretty shocking. But it’s something that people with less visible disabilities face every day.
It’s true that people can sometimes be cruel, but, if we are kept ignorant and unaware of the needs and experiences of others, how can we be expected to know what to do? As a group, people with disabilities will remain vulnerable where this kind of ignorance prevails.
I don’t believe the onus of responsibility for creating space for all people with disabilities lies with the uninformed public. It lies with the governing bodies and services we use. These are the organizations which have yet to champion legislation that supports and protects people with various types of disabilities.
Our signage on BC buses, for example, often reads like a suggestion: “Please remember who these seats are for.” I think this is misguided and, in my experience, not that effective because not every person or culture views disability with compassion. By comparison, a sign in the US reads, “Disabled use only, $300 fine.” A clear message with a clear consequence.
It is time for all of us to do better for people living with invisible disabilities. London, England has found one way to do it. If you need to sit down on public transit, you can order a button that identifies you as someone who needs a seat.
People are not asked to justify their disability to receive a button. An education campaign told the public they were expected to offer a seat to someone who wore the button. TransLink could easily spearhead a similar program here in BC.
This takes the burden off the person with a disability to explain, each time, why they need a seat! Not everyone is always up for or well enough to fight that tiring battle.
I think this is an excellent approach to dealing with invisible disabilities while traveling because it legitimizes a person’s needs in the minds of those who might find fault with them. This also helps to remove anger from the equation, and focuses on a sustainable solution for people who do not look like they have a disability.
For passengers with a disability who are often not believed or taken seriously, a small change in the way we do things in BC could ensure the safety of people with visible and invisible disabilities.
COVID-19/DABC OFFICE UPDATE
After much discussion and consideration of the risks associated with COVID-19 as well as the needs of clients who require in-person support, DABC’s office will re-open soon to some clients. We will be re-opening using a staggered approach to lessen risk and allow us to adjust to welcoming clients to a new space.Click here for more info.
Since 1977, Disability Alliance BC has been a provincial, cross-disability voice in British Columbia. Our mission is to support people, with all disabilities, to live with dignity, independence and as equal and full participants in the community. We champion issues impacting the lives of people with disabilities through our direct services, community partnerships, advocacy, research and publications.
We acknowledge and have deep gratitude to work together on the unceded traditional territories of the xʷməθkʷəy̓ əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Selíl̓witulh (Tsleil-Waututh) Nations of the Coast Salish people. We honour the many territorial keepers of the lands.