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.

DABC Statement on Medical Assistance in Dying (MAiD) and Bill C-7

June 24, 2022

Disability Alliance BC (DABC) exists to support people with disabilities to live with dignity, independence, and as equal and full participants in community. We believe in, and champion, the autonomy of people with disabilities and the lives they lead. DABC recognizes that for some, Medical Assistance in Dying (MAiD) is an option they may choose, and for others, it is not a path they would choose. We support them both.

In 2015, assisted dying was decriminalized by the Supreme Court of Canada. Subsequently, with the passing of Bill C-14 in 2016, MAiD became law. Under Bill C-14, one major requirement was that the patient’s death had to be reasonably foreseeable to receive access. This restriction led to court challenges arguing that the “reasonably foreseeable” requirement violated the Canadian Charter of Rights and Freedoms. In 2019, a Quebec Superior Court judge ruled it was unconstitutional to restrict access in this way.[1] The government then produced Bill C-7 which split MAiD into two tracks. One track for patients whose death is reasonably foreseeable, and the other for those of whom it is not.

DABC cannot support Bill C-7 and any further expansion of MAiD.

Bill C-7 allows people with disabilities to be eligible for MAiD if they are enduring physical or psychological suffering “that is intolerable to them and that cannot be relieved under conditions that they consider acceptable” (Criminal Code s241.2(2)(c)). This eligibility has been misused to include situations where the intolerable suffering is caused by societal conditions, not medical conditions. These societal conditions include but are not limited to: the inability to afford treatments, the inability to access sufficient care, and the inability to access safe and affordable housing. In such cases, poverty is the true condition leading to intolerable suffering, not the disability itself.

Allowing access to MAiD for those who do not meet the reasonably foreseeable natural death (RFND) requirement, while simultaneously failing to implement adequate safeguards, has inevitably led to people accessing MAiD because of unmet societal needs or due to ableism within the medical profession itself, and not due to the effects of medical condition(s) on the people who have them. DABC has heard directly from clients who have experienced their doctors suggesting the possibility of accessing MAiD even though they never asked for this. Clients have expressed feelings of worthlessness and not feeling safe with their doctor.

Until people with disabilities are provided with social support and services that allow them to live a life where their societal needs are met, DABC cannot support Bill C-7, and calls for it to be repealed.

The current state of MAiD in Canada relies heavily on safeguards to strike a balance between respecting the “autonomy of individuals to choose MAiD as a means for relieving intolerable suffering” and “protecting vulnerable persons.”[2] However, certain safeguards have proven grossly insufficient in their intent of protecting life. Safeguards can fail to resolve underlying issues, be unavailable due to cost, distance, or wait times, or even go un-offered in the first place. When a person considers accessing MAiD, their path to a decision is “determined by the civil, social, economic and political context in which they live.”[3] Lack of access to basic needs like housing, medication, care, transportation, and financial stability intensifies suffering and may push some to categorize their level of suffering as intolerable. DABC raises serious concern over the impact of MAiD in its current form. Furthermore, the impending expansion to include mental illness and mature minors will compound its damage.

People with disabilities are being forced to choose death in the face of an ableist system that is perpetually refusing to provide the support they need to live. They deserve a real choice.

Sincerely,

The Board of Directors and Staff at Disability Alliance BC


[1] https://www.justice.gc.ca/eng/csj-sjc/pl/ad-am/c7/p1.html

[2] https://spcommreports.ohchr.org/TMResultsBase/DownLoadFile?gId=36253

[3] Human Rights Violations in Canada due to Medical Assistance in Dying Legislation, 2022

Download a PDF of the statement here:
https://disabilityalliancebc.org/wp-content/uploads/2022/06/DABC-Statement-on-MAiD-and-Bill-C-7.pdf .

Article - Dear Canadians: Please Care about Families like Mine

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.

For more information on this movement and ways to support it, see: https://www.disabilitywithoutpoverty.ca.

To find contact information for your MLA, see https://www.leg.bc.ca/learn-about-us/members/.

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.