Article - The Most Personal Choice: Defining Self

Photo of Jason Schreurs.

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

Image of Lauren Stinson. She is smiling, and has short brown hair and tortoiseshell glasses.

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.

Article: Spoonie Life and Language

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.