Why Do I Bother?

I Feel Like Sisyphus

I’ve been on Substack for a month now, and haven’t yet explained what my intention is here. The short answer is that I am oh-so-tired of disability and ableism being an afterthought in the larger world of social justice activism. And, ableism targeting Mad and neuorodivergent people — even within anti-ableism circles — is generally considered to be a non-issue (with the possible exception of uttering the “r-word”) in most settings where blatant instances of other forms of oppression would not be tolerated. That is not acceptable to me. I’m doing what I can to to change that.

This is my frame of reference: I am Autistic, queer, AFAB enby, fat, an anti-zionist Jew, un/under-employed, and multiply disabled. I am also White, housed, married, a US citizen by birth, English is my first language, I’m usually perceived (based on dominant cultural standards) as intelligent and articulate, and I have never been convicted or incarcerated. I am of European descent; I was born on land stolen from the Pueblos people and I currently live on land stolen from the Bodwéwadmi (Potawatomi), Kiikaapoi (Kickapoo), Kaskaskia, Myaamia, and Peoria people.¹ As much as I am considerably marginalized, I also have a lot of privilege. I’m most assuredly privileged in ways that I don’t even recognize, such is the nature of privilege.

I’ve spent most of the past decade doing my activism within the context of North American yoga (NAY) culture, in an organization that endeavored to raise awareness of social justice issues within the yoga “community.” Despite the kumbaya-infused sentimentality of the NAY world, systemic oppression is alive and well there, just as much as in mainstream culture. Some forms of oppression —including ableism — are actually amplified by this subculture. The organization I worked for was typical of the social justice world in that attention to disability was an afterthought. I spent many years struggling within that organization to broaden its focus to include anti-ableism work. I was a wee bit successful in that, and was just beginning to feel like all my hard work there was starting to bear fruit when the organization shut down at the beginning of this year. I burned myself out trying mostly in vain to encourage change in the NAY world. This blog is a way for me to continue that work, hopefully from a distance where it doesn’t light me on fire on a regular basis, and hopefully, also, with a broader focus.

Explaining my present approach requires some background from the past:

As much as I hate to admit it (but that’s a story for another time), my family of origin did have some positive influences on me. My parents imagined themselves to be hippies and activists. They taught their children to abhor intentional bigotry (I was allowed to swear like a sailor if I was so inclined, but using any pejorative term against anybody else was strictly forbidden). Although their dedication to the counterculture movements of the time amounted to not much more than cosplay, my spongy young mind was oblivious to the performative nature of their involvement, and I absorbed it all. For them, it was a thing they did, like a hobby; for me, it became part of who I am. They were upper middle class, non-disabled, white, cis-het, Ivy Leaguers, who really did mean well. They donated a lot of money and went to a lot of marches. Their activism focused mostly on the anti-war (Vietnam) and Civil Rights movements. They genuinely wanted to help, which was exactly the problem: they were what would now be described as “white saviors.” They were very proud of themselves for things like paying the maid for sick days, and my first experience as a marginalized token was my mother flaunting her remarkably virtuous and enlightened acceptance of her gay offspring in the marketing materials for her counseling practice. I suppose it’s possible they did at least as much good as harm but they did it all from a safe and comfortable distance. Their activism required nothing from them that they couldn’t easily and painlessly give. When some big changes made life for our family much harder and more complicated, they abandoned their activism and neither or them ever returned to it. I consider myself fortunate that I found my way back to those activist roots in my twenties.

Being my parents’ child, I started my adult life as an activist from a safe and comfortable distance. Their distance had been the buffering provided by pure privilege and paternalistic hubris; mine was a protective layer of scattershot anger and resentment. My first stop was self-interested, reactive bitterness, in which my interpretation of “justice” was a world where everything was as I would have it be.

It’s been a long road from that starting place. I have no idea how far I still have to go, but I do know that I am not the same person I was then, and I am therefore not the same kind of activist. What turned me towards more authentic and collaborative participation was the guidance of a handful of dedicated mentors who encouraged a blooming awareness of my own various marginalizations within a social context. I am grateful to the wiser souls who guided me away from that desolate wasteland of self-absorbed fury and toward a visceral and vulnerable yearning for inter-dependent, collective liberation. I hope I can pay it forward. Following the guidance of that liberatory yearning requires both a constant practice of self-inquiry and mindful curiosity about experiences and perspectives not native to my inner landscape.

Doing this work is a matter of survival for me, and most often it feels like a battle. It is my life’s work, even as I’m faced with the dilemma of how on earth to continue doing it sustainably. I don’t call it my “purpose” or a “calling” because I am leery of any description that suggests a lofty, or morally superior intention for my commitment to activism. My motivation is simple: I do this work because it’s the only thing I know to do, and it hurts my heart and my soul to do nothing.

My primary focus is on the intersections of ableism with other forms of oppression (“intersectionality”), and how varying forms of disability intersect with each other.² I had no particular interest in anti-ableism activism before I was aware of my own disabilities, and that is typical. Most social justice movements — even those that strive to be intersectional — largely ignore disability and ableism, or flatten it into their primary focus, attending to it only when doing so furthers their cause.

Most social justice movements that don’t center disability and anti-ableism are ableist AF. And most disability and anti-ableism movements that aren’t intentionally intersectional are just as bigot-y in all other ways as is the dominant culture. I am driven to change that.

Of all my social locations, I feel the most marginalized by ableism. I don’t deny that my activism serves me at the same time that I hope to be of service. And yet, I don’t love myself enough to go to all this thankless trouble only for my own sake. While it does serve me to some extent, it also overwhelms, confuses, and frustrates me, and it breaks my heart on a regular basis. It is the only way I know of to access a feeling of hope for the future — for both myself and the collective — and it is one of the few ways I have found to feel connected to a bigger existence outside of myself. It also leaves me feeling isolated, invisible and abandoned more often than not.

This work exposes me to both ends of that connected-to-collective spectrum: occasional glimmers and sparks of the life-saving felt-sense of belonging to community are scattered amongst the relentless soul-crushing isolation and loneliness that is a product of trying to live authentically and with dignity as a multiply disabled, neuroqueer person in a horribly ableist society.

I feel like Sisyphus, and endeavoring to get the rest of Social Justice World to take ableism seriously is my boulder. But I do not believe that the relentless and repetitive work-then-failure was the most punishing aspect of Sisyphus’ fate. Humans are tribal animals, and almost all of us (including my grumpy, autistic, ultra-introvert self) need to feel understood and included. I’ve yet to find an analysis or description of the myth that addresses the isolation that Sisyphus was doomed to endure, and I find that strange. He did the work on his own. All alone, utterly isolated, for all eternity. That is the true tragedy.

In her introduction to the book “Resistance and Hope” (of which she is the editor), disabled scholar, writer, and activist Alice Wong describes her reaction to the US Presidential election result in 2016. The election-night process of reflection that she details was the catalyst for the book, which is an anthology of essays written by multiply marginalized disabled people:

In my moments of fear and panic towards what I knew would happen, I was strangely comforted by the fact that disabled people have been surviving and resisting for millennia…. What is the relationship between resistance and hope?…[I] realized we weren’t entering into a new moment; every moment is cyclical and tied to living, resisting, dying, and rebirth. We are all linked to one another for survival…. Think about your privilege, get angry, and become involved in your various communities.³

Wong’s words resonate deeply with me. I have not yet found the words to describe my own struggle with finding comfort in the hope that Wong describes at the same time that I cannot avoid the utterly demoralizing reality that even if my hopes are realized someday, it won’t be by me, in my lifetime. Substantial change — if it ever happens — will come about long after I am dead. I know I will not live to encounter anything more than occasional Easter eggs of progress that I must diligently search out to recognize in the midst of the status quo. It is hope for the liberation of the collective, and not so much for myself, that keeps me going. Like all humans, I am a tribal animal; no more, no less, and that is plenty. My concern for the collective-minus-me is not lofty or altruistic — it is evolutionary hard-wired instinct, in which the survival of my people matters to me.

If my interpretation of lizard-brain survival instinct as my primary motivation sounds cold and cynical, please hear me out. One of the difficulties I grapple with daily is that due to my autistic neurology, I experience and interpret my interactions with the world much differently than do most people. Neurotypical interpretation of both thought and experience is a highly elevated “normal” in Eurocentric cultures, and virtually all of us (including Mad and neurodivergent folks) are relentlessly programmed to consider any deviation from “normal” as unstable, “crazy,” nefarious, or at best, either cold and calculated or laughable. This cultural bias is not only cruel, it’s inaccurate. Being “normal” doesn’t make anyone a better person; it’s just a badge that allows admittance to places of dominant privilege. “Normal” doesn’t do anything. It’s not inspired, or innovative, or the least bit interesting. Part of my journey towards liberation is a practice of embracing my weirdness. So here’s one of the biggest differences between my personal philosophy and the cultural paradigm: I perceive no separation between cold, hard, practical reality and the inter-dependent spirituality of hopeful resistance; they are both part of the whole, and no philosophy that excludes either is of much use to me. My heartfelt and soulful feelings are equally as important to my interpretation of reality as is my logical/intellectual perception, and I don’t feel a need to elevate one over another. This is a hard-won attitude. My family of origin relied on “intelligence” to the exclusion of any methods of experiential interpretation that require a visceral awareness of the unpleasant aspects of being alive. I was raised to believe my “superior” intellect was the most important attribute of my being, and that it would make an accurate and astute comprehension of All the Things easily accessible to me. I was in my thirties before I ever doubted that I could eventually logic my way to happiness and success (whatever that is). That was a delusional belief, if there ever was one. “Intelligence,” as it is narrowly defined by cultural norms, is only one tool for interpreting experience, and it is not of much use, in isolation. But I digress…

I believe two things at once, in no particular order: 1) Life’s a bitch and then I’ll die, probably alone and misunderstood, without ever having felt included in community. 2) Ditto what Alice Wong said, in that quote I shared here. Contrary to what logic would dictate, I do not have a problem accepting both as equally important and truthful aspects of reality. So in spite of all evidence to the contrary, I will continue to work as if I believe substantial change in a very short amount of time is possible, because abandoning that hope would leave me with nothing. It would kill me.

What I hope for the most is for every living being to be treated with the dignity, respect, and care that we all deserve, for no other reason than that we all experience life, and it is painful and hard a lot of the time. It pisses me off that us humans have such a strong proclivity for making life more painful and harder than it has to be, and then ignoring and demonizing others for expressing truths we don’t want to acknowledge, especially when we are implicated in what is causing them harm. That strong proclivity is the cold, hard truth part. A hope in our collective ability and willingness to learn to do better — to practice being more empathetic, ethical, equitable, inclusive, and aware of the ways that we’re not those things — is at the heart and soul of my intention.

This is a foundational point of my approach to social justice activism, and it speaks to the last sentence of Wong’s quote: The vast majority of those of us who are oppressed in one or more ways also have privilege in other ways. Whether we are impacted by our oppression and/or buffered by our privilege shifts, based on a slew of situational conditions at any point in time/place experience; our social location is dynamically interactive, inter-dependent, and contextual.⁴

Being oppressed does not ethically excuse any of us from acknowledging our complicity in perpetuating forms of oppression that do not target us. We also have a responsibility to acknowledge (when/if/as much as we are able) ways that our internalized oppression perpetuates systemic oppression, both upon ourselves and others. Because it always does. Privilege and oppression are almost never binaries, and it is inevitable that those of us who are marginalized also have much to learn about how our socialization has informed our perceptions.

Liberation is not the opposite of oppression; it is the opposite of opting in, whether unconsciously or intentionally, to systems of privilege and oppression, whether from a marginalized or privileged social location.

Liberation is also not a binary, or a destination, or a thing; it is a lifelong process that I aspire to but will never attain. It is a vanishing point that I move towards relentlessly, even though I know I will never quite get there, because the alternative is to accept the horrific injustice of how things are. Liberation is in finding meaning that resonates, rather than believing what I was told to believe. And I want that for myself, and for everyone else, too.

So how do I learn to know what I don’t know I don’t know? It’s complicated. I don’t know if there’s a tidy answer to this question, but probably not. I do know, though, that it is impossible to do without rigorous self-inquiry. I consider my practice of self-inquiry to be an integral and necessary part of my activism. In my next post, I will elaborate on my practice, and how I use it to learn to do better, both at leveraging the privilege I have, and finding the courage to unlearn and reject internalized oppression.

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1. If you want to know whose land you live on, the Native Land Map is an excellent resource. Please donate to them if you can. (https://native-land.ca/)

2. Intersectionality is a complex and oft-misunderstood concept. I plan to write about it in more depth soon. (https://www.intersectionaljustice.org/what-is-intersectionality)

3. Wong, Alice. “Introduction.” Resistance and Hope: Essays by Disabled People, Kindle Edition ed., Disability Visibility Project, 2018, p. 8.

4. I want to be careful here not to put words in Wong’s mouth. She did not actually say these things. She simply said “Think about your privilege…”. Since she is writing to an unknown audience, and has no way of knowing the social location(s) of anyone who is reading her words, I interpret her call to action to imply that she wants everyone, regardless of social location, to examine whatever privilege they may have.

5. #ActuallyAutistic #AutisticAdult #ableism #disability #neurodiversity #neuroqueer #intersectionality