Recently I spent some time at an ashram. I could fill a book with that experience and everything I got from it, but I’m going to focus on one thing today. In asana class, one of the swamis kept saying, “work with your body, not on it.”
Initially, I just thought about it as an interesting way to look at asana practice. But at the same time, I’d been reading Care Work by Leah Lakshmi Piepzna-Samarasinha, and now I have to take it a step further.
Ableism, as I understand it, is expecting everyone to show up and operate within a certain societal mold. It is not allowing people to come as they are. This might mean not having cut curbs, not providing ASL interpreters, or expecting everyone to move at the same pace.
Ableism is demanding of ourselves and other people that we work on our bodies not with them. In other words, it is expecting bodies to be fixable and different than they are instead of creating spaces and norms that provide access for everyone to show up wholly in the bodies they occupy now.
And when I say bodies, of course I am including brains. Brains are not separate from bodies.
First of all, the truth is that unless we die suddenly, every single one of us is going to be sick or disabled or both. Thinking that ableism is about other people is a delusion. It is about you and everyone you know and love.
I do not have a visible disability, but I have a complicated and unusual brain that has labels in the DSM. Whether we can spot our mental patterns or physical bodies in medical texts or not, we all have complicated and unusual brains and bodies that have unique sets of needs. Every single one of us needs to be able to show up authentically, whether we have a medically diagnosable disability or not.
I’ve been thinking a lot about my brain and how to work with it, not on it. How to treat it without violence, without the assumption that because it is not standard issue, there must be something wrong with it, something that needs to be fixed, worked on, improved. I like to think of it as self-tending rather than self-improving.
The first thing for me to know and understand is what my needs are and in what ways society is telling me that those needs don’t matter and is expecting me to conform anyway. Once I understand that and I advocate for my own needs, I am advocating for everyone’s needs everywhere and for the idea that there is a world in which we can all show up exactly as we are. More importantly, there is a world in which we ourselves are allowing and explicitly providing access to those with different needs than our own, so that they can show up as well.
Disrupting ableism means we bring everyone onboard. Everyone.
Here’s a partial list of ways in which I may not meet society’s expectations. They’re also ways in which I might not meet your personal expectations of me, and a request that you not take it personally.
I may not be able to:
Work a set schedule
Be consistently productive by capitalist standards
Be cautious or premeditated when I make decisions
Show up to things, even if I would like to and said I would
Return phone calls, texts, or emails
Retain my focus, even on things that interest me
Participate in activities in which becoming intoxicated is centered
Track details, tasks, or maintain a calendar without mistakes
Participate verbally in group conversations or meetings
Tolerate a loss of sleep
Commit to future activities
Think or speak in a linear or methodical way
Maintain the status quo. I will sometimes want to blow things up and start again
Sit still for long
Stay at social events
Recognize your face if I haven’t met you many times or seen you recently
Not became visibly upset about things that most people would find trivial
Comply with other people’s requests or societal norms that I do not understand or agree with
This list essentially makes me unemployable and may be considered by some to be disabling. But my list, and everybody’s list, can also be looked at as an alternate way of interacting with the world, as valid and important as any other. Our lists indicate that we have unusual and brilliant ways of contributing.
(I need to call my own ableism out. I had to delete a sentence whose purpose was to make sure everyone knew that I can still earn a livelihood, as though that ability validates me as a human being. Equating earning power with human value is probably ableism at its worst.)
I share this list so that you might create your own. And, by looking at our lists, we may begin to understand how our expectations are hurting other people. I would love to read everyone’s list because I obviously have blind spots. I know, in fact, that I will often fail to recognize people’s needs even when they are exactly the same as mine.
We have a lot of work to do. For me, as a start, it’s learning to recognize, verbalize, and advocate for my own needs as a way to tend to myself, but also so that you can too.
Here is a very small and inadequate list of resources. Please add more in the comments.
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha (This happens to be Square One’s book club pick for April 24. It’s free and on zoom. Sign up here.)
The Body Is Not an Apology by Sonya Renee Taylor
From their website:
Fireweed Collective offers mental health education and mutual aid through a Healing Justice and Disability Justice lens. We support the emotional wellness of all people and center QTBIPOC folks in our internal leadership, programs, and resources.
Our work seeks to disrupt the harm of systems of abuse and oppression, often reproduced by the mental health system. Our model for understanding ‘severe mental illness’ is community and relationship-based and divests from the prison industrial complex and psych wards.