Article: Spoonie Life and Language
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.