I turned 31 this year, and I’m going to admit that I don’t have the body that I expected or planned to have. It’s a bit of an odd thing to come clean about because I prefer to maintain a private life, but I feel like I have to in order to really sort out my feelings and come to terms with the very real struggles I face day-to-day. For years after I got sick I maintained my optimism and positive attitude through the unrealistic expectation that my health issues were just a phase I needed to push through, something with an endpoint. Maybe it was the fact that I was still in my indestructible 20s, but it was easy to lean on that naïvety to pretend that my struggles were only short-term. Soon, I’d be back to squatting heavy, running every day and throwing my niece and nephews over my shoulders during playtime, right?
The thought that my life would continue to alter more and more towards a gentle and slower pace or that I would be forced to make decisions between my passions and my health never occurred to me. In fact, when it started to be my reality I actually fought harder and harder to prove it wasn’t true. I ground myself into the ground attempting to be the person I was before I got sick, which only made my body more painful to be in. It did nothing to stop or slow the deterioration of my muscles, my athleticism or my mental health. Still, I refused to quit pushing and I think that it cost me more than I gained.
Only within the last year, since I met and began working with Elaine actually, have I had the space to really begin to dig into my disabilities and the learned ableism that comes with them. Learning to accept and be proud of my body where it is on any given day and beginning to enact forgiveness for myself and my body have both been major steps in unlearning the colonial anger I hold for what I perceived as my body betraying me. I choose to use the present tense “hold” because I’m still very much learning to unpack and unlearn that anger and ableism. While it holds less and less of my energy each day, I know it’s likely going to be a lifelong process. I see that even in my desire to unpack disability and understand it before I commit to the term. I see it in the way I dance around the phrase “I’m disabled,” and instead choose to align myself more with the phrase “I have several disabilities.” In my mind, I can’t qualify myself as disabled. I just don’t see myself that way, and maybe that’s something else I need to unpack here.
In preparation for writing this, I wanted to define was a disability actually is, and the best definition I saw was on the Federal Disability Reference Guide for the Government of Canada. Apart from them quoting the most widely accepted WHO definition that defines disabilities as “an umbrella term, covering impairments, activity limitations, and participation restrictions,” the Government of Canada actually uses a sentence that I can get behind. They say that disabilities are “a complex phenomenon, reflecting an interaction between features of a person's body and mind and features of the society in which they live.”
That last sentence there really hits home for me because, on one hand, I don’t say that I’m disabled due to internalized ableism. In my mind, I can’t qualify it. The phrase doesn’t make sense to me for me. Perhaps that’s because, on the other hand, my body and the way that it exists would have been naturally accommodated in the Indigenous societies of Turtle Island. I wouldn’t be “disabled” in the whole sense of the word. Indeed, I would have disabilities and limitations, and my community and family would accommodate me by shifting roles around. Ones that I can fill without harming or overextending myself would have been passed to me, while others would have taken up other roles. The society we built prior to colonization was inclusive and ready to shift when needed. There wasn’t a “wrong” way to be in a body or a wrong way to serve your community, Nation or family.
When I read the Government of Canada’s definition of disability as “a complex phenomenon, reflecting an interaction between features of a person's body and mind and features of the society in which they live,” it gave me pause. It gave me even more to reflect upon. My heart, mind, body and Spirit don’t interact well with Canadian society — Western society as a whole really. The capitalist patriarchal structure that runs the Western machine is simply incompatible with how I operate, and trying to fit into it makes me sick. I can’t keep up. Does that make me disabled? I really don’t think so. I think that the Western system has decided who is “able-bodied” in the “perfect” way and they reward those people the highest. Those of us who try to keep up but struggle only further injure ourselves and incur shame as we fail.
That’s not to say that I’m suggesting no one is disabled, far from it. However, I think there’s too vast of a difference between what the State sees as a valuable person vs a disabled person, and what we know to be valuable people, some of which also happen to be disabled in some way. Some people are fine and even prefer the term “disabled” because refusing to use it is a form of erasure for a marginalized group that already suffers near intentional erasure in our society. At this stage of my life, using “I’m disabled” over “I have a disability” feels more like I’m speaking about how I interact with society instead of how I interact with myself. I already know that Canada and the West have caused this problem and I don’t want to add their damage to more of my identity. Instead, I would rather focus on myself and how my body is guiding me and the accommodations I need instead of society and its lack of accommodation. Perhaps that’s the point, though, and those who fight for the use of “disabled” are ten steps ahead of me. Maybe they’re already aware that their body is guiding them and are now using a pointed label to direct attention to the busted system. I’m not at that point yet.
As I said, I imagined a vastly different body and an equally different lifestyle when I entered my 30s. The anger at not having that life is gone, though short stints of frustration do surface when I’m feeling particularly left out. In the last year, I’ve grown more compassionate, empathetic and intentional than I ever could have if I hadn’t gotten sick. In more ways than I can list, the lessons I’ve gained from having disabilities and from living in this body have forever changed the way that I approach myself and those around me. I still have a lot to learn and a lot of ableism to unpack. I know this, but what I want to end on is the most important thing I’ve come to learn about myself recently.
Despite the pain and the struggles that I face, and regardless of the internalized colonial ableism I’m dismantling, my body and its disabilities have ultimately made me a better person than I would have been if I wasn’t given this body. Because of that, I’m deciding to meet my body with gratitude moving forward, regardless of if I ever come to terms with the title of “disabled.” My hope is that disability or otherwise, you can join me on this journey with our bodies and their lessons.
Mahsi,
Jen
“Definition of Disability”