Our Transition team is always glad to receive feedback and to consider articles or creative work from our community partners and from people living with a disability.
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.”
Spoonies
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.
Mad Folks
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.
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