I’m reflecting this month on “recognizing wholeness,” the 5th principle of Disability Justice. Lots of thoughts swimming around that I want to share.
I really need to acknowledge that in many ways I am new to all this. People who have been more solidly in a world not accessible to them have so much more experience and wisdom around this than I do. You all teach me so much. In many ways disability feels new-ish to me, as an acknowledged experience, as an identity, and as someone for whom many aspects of the world have been and are now accessible. I give thanks to disabled folks, disabled activists, and especially disabled POC, queer, and trans folks who have been having these conversations for a long damn time, sharing wisdom and continuing to push us further toward wholeness. It is because of you that I am here, that I can dive so deeply into a more liberatory idea of this thing called “wholeness.”
In the social model of the word “disability,” disability is defined by lack of access, located in an environment that can either provide or hinder access. One simple example being that if I have an impairment that makes it difficult to walk, and I use an assistive device like a wheelchair, and there are adequate pathways and ramps, I have access. I am only disabled if I do not have the assistive device or an environment in which that device can function. So, in a world where access is possible, what disables me is actually the environment. With the right tools (glasses, anyone?) or frameworks (there are many different ways to “be,” beyond what the system says is “ok” or “good”), a great brilliance of different body/minds can access participation in the world. We are all aging and heading toward death. No exceptions. Our journeys from here to there all look different.
Being fat, among other things, has always included some degree of lack of access. In first grade, the school uniforms did not come in my size. I recall my mom sewing a lot of my clothes back then. Clothing that fit was always difficult to access. Based on availability of clothing alone, I could easily understand that my body size was not supposed to exist. (And of course that was not the only source of this message.) So, in the social model, fat = disabled.
In white supremacist capitalist heteropatriarchy, fatness is seen as a choice, a bad one, and the only good option is to fix it. Similarly, so many other physical and mental conditions are seen as the “fault” of the individual, and the individuals can redeem themselves only by striving to overcome those conditions, reaching toward the system’s idea of a “good” body/mind. Those not reaching or unable to reach are basically trash.
I stopped weight-loss dieting as a teenager, after an entire childhood of being forced to diet by my family, by doctors and psychiatrists. The systems that told me I had to redeem myself by striving to become thin were of course deeply embedded, and to some extent still are, since those systems still dominate the culture, reinforced by everyone who has internalized and not questioned or challenged them. But some part of me knows those systems, and the people who continue them, are lying to me. Those systems don’t care about my wellness, my wholeness, my creativity, my joy. And it became clear to me that a life that included wholeness, creativity and joy would necessarily be a life divested from the systems that pressure me to either conform or be trash. I am grateful to the first people who gave me some language and tools to channel the giant inner “fuck you” that was protecting me, protecting the possibility of wholeness, creativity and joy for me. I give thanks to the fat dykes of Milwaukee, WI for teaching me, for seeing me, for seeing the possibility of wholeness for me in the body I had.
I do not believe wholeness really exists on an individual level. Nothing really does. Inner/outer, one/many, micro/macro are reflections of one another. I think about this a lot, in terms of my mind and my community. My dharma mentor Larry Yang teaches about the practice of community building, always listening for and to the people or communities that are left out. This is something I have learned from my dharma practice about compassion for myself and my mind, too — welcome all of experience so it can be seen, faced honestly, held with tenderness, learned from. Only then can discernment and wisdom do their jobs of figuring out what to do. But the mind is trained from early on to reject stuff we don’t like, and the inner sorting of “good” and “bad” becomes so automatic, so subconscious. Likewise our world, our communities. How many people do we automatically reject or dislike or avoid or not see or assume things about because of the internalized sorting system our society has taught us? And because it’s so internalized, we don’t even know we are doing it much of the time, or we believe it and assume we are right. This is part of how oppression works, both internalized and systemic. The inner or outer judge enforces the system that keeps oppression functioning.
Wholeness means all parts are present, does it not? My first description from my head would say wholeness means all parts are welcome, which means the conditions to support all parts being welcome need to be present. In the description of personal wholeness, if that’s a concept, the parts in question would be my body/mind/heart and my lived experience. In a community, it would be people and their bodies, minds, hearts and lived experiences.
The definition of the principle put forward by Sins Invalid says “Recognizing wholeness: People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience.”
Capitalism drives us to leave so much of ourselves out! And to leave so many people out! Individually and collectively, the drive in a capitalist system is not for us to be whole.
Here are a few ways anti-wholeness plays out in my experience: in my mind, my life and my communities.
In my 30’s I sustained various injuries and developed more mobility impairments. I had intense shame about it, being both fat and visibly mobility impaired was doubling the stigma I’d lived with all my life. This was most actute around my parents, the first tangible sources of the shame around my fat body. I didn’t want them to see me as disabled, because then they could feel justified in trying to force thinness upon me from such a young age. Fatness and ableism work together, yet fat and disabled communities are not easy bedfellows because we’ve all internlized fatphobia and ableism as somehow separate things. So much of my experience rejected, hidden away in shame. Where is the wholeness in that?
As I’ve come to identify with the word “disabled,” and started rooting myself in disability justice community, I’ve come to see such a deeper level of this anti-wholeness in my mind. In meetings at Sins, for example, where the norm is to do a go-around that includes sharing whatever “access needs” we have, I saw myself repeatedly glossing over my experience, saying “I don’t have any access needs.” When in fact, I did, and sometimes I didn’t know what they were, and sometimes I would be just flat-out not saying them! My own internalized ableism, so deep, had me so disembodied that I didn’t know what I needed, and desperate to be seen as not having any needs. Wow, shutting so much of my real, lived experience out. The deeper I go, the more I see how I’ve structured my life around hiding my needs, hiding my real body, not making a fuss, not taking up space. I locate the source of this in whiteness, ableism, capitalism, patriarchy. Now, when asked about my access needs, my practice has become to think more deeply, to acknowledge at least internally the ways I’m handling things myself, to try harder to ask for what I need and hold any shame with tenderness, and instead of ever saying I don’t have access needs, I might say “my access needs are met.” Because really, nobody on earth is without access needs. It’s just that, as my friend Katie might say, in an ableist world, certain body-minds’ access needs are more likely to be met.
My awareness of the intensity of ableism in this world grows with my growing consciousness around disability. I think about communities I’m in and around where it’s standard practice to just completely exclude various types of disabled people by having events that aren’t wheelchair accessible, or that don’t account for people with bodies that diverge from the standard norm defined by capitalism. When I think about it, I sometimes find it shocking that people don’t feel the dissonance between “inclusive” and not accessible, between “supporting the participation of marginalized communities” and not accessible. But then I remember the ways that I, too, have spent most of my life automatically rejecting or not even noticing disabled people and experience. Ugh, it hurts my heart to see all the harm I have enabled because of the ways I’ve internalized ableism.
I want our communities to start recognizing wholeness, broadening who and what we consider part of what makes us whole, noticing what and who we reject, noticing what we do that keeps the possibility of wholeness at bay.
There is so much more to say about all of this.