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.
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.
This article was written by Brenda Lenahan, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.
If you’re interested in contributing to Transition as an individual or an organization, please email transition@disabilityalliancebc.org.
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I am part of an invisible demographic. Yet, my son and I can’t leave the house without feeling noticed everywhere we go.
My seven-year-old son is defined in the medical world as a child with medical complexity. He is non-verbal, yet his smile will speak loudly to you. He is charming and silly, sensitive and loving. My son feels like my personal disruptor as well as my saviour from a life less lived.
He has introduced me to a world of love and beauty, as well as one of discrimination and injustice. He is disabled. Disabled by a world that is not designed for him and at times feels like it is actively trying to oppress and dismiss him.
Let me share a bit of this with you.
Despite the privilege I inherently have, I find myself struggling to provide for our basic needs, and I am not alone. Thousands of families like mine across this country struggle every single day.
Disability poverty starts at birth for many kids in our country. Families like mine live with a painful juxtaposition. We strive to save and plan for our children’s lives well beyond the age of 19, as they will always be fully dependent and need 24/7 assistance for their daily needs. In the same moment, we brace ourselves with the knowledge that they may not live to their next birthday. We routinely grieve alongside other parents and friends who have lost their children at very young ages.
Our kids certainly have a way of keeping it real and raw.
We live in a country and a society that is paying a lot of lip service these days to inclusion, diversity and disability equity. Yet, the financial burdens we bear are intense.
Families like mine don’t have access to income support that recognizes the 24/7 demands of our kids’ care and the barriers to employment that this creates.
The federal Child Disability Benefit is only around $240 per month and limited to families with the lowest incomes in Canada. Although this benefit was slated in 2019 to be doubled, we are still waiting.
The federal Liberals have put forward a plan to bring $10 a day child care to all Canadians. Why not plant disabled children’s needs at the forefront of policy discussions to ensure that this plan will truly be inclusive and equitable?
Let’s also hope the promised Canada Disability Benefit for working age Canadians with disabilities becomes a reality.
As a solo mom, I worry deeply about the future for my son and so have stepped up to put my energy into the collective voice for change. I was honoured to join the Leadership Team of Disability Without Poverty.
This movement needs all Canadians to care. Ask your local MP what concrete actions and policies they will put forward specific to children with disabilities.
We are on the doorstep of an extraordinary opportunity.
Building back with human rights as our guide, is the only chance we have to ensure that social equity is in our future.
Brenda Lenahan and her son live on the west coast of Vancouver Island. She is the founder of BC Complex Kids and advocates for access to equitable supports for kids with medical complexity.
