Mel Baggs Will Never Leave Us

Text against a dark olive green background reads "Mel Baggs Will Never Leave Us"

Content note: includes discussion of eugenic ableism, medical abuse, institutionalization, white supremacist murder

Memory is important.
But your own personal memory is not necessary.
The best of human memory is fallible, changing, and fickle. And memory can fail. In so many ways they can’t be counted.
It can be frightening when memory disappears.  In all the ways it can disappear.  Temporarily.  Permanently.
Memory is not what defines us.
We are still here even when we can’t remember.
And the world remembers for us.
Everything we are, everything we have done, everything we have been part of, everything we have affected. Those things are still there in the world.
Our mind may fade or distort or completely eliminate the events but the events, and we in them, are still there, embedded in the world.
Memory is useful, important, valuable. But our memory is not the only memory. There’s a deeper memory, a longer memory, a memory that doesn’t require anything of us.
And in that memory, nothing is forgotten, and nothing and nobody is invisible.

-Mel Baggs, The other kind of memory (2018).

[emphasis added]

At the 2020 Autistic Self-Advocacy Network Gala, executive director and longtime activist Julia Bascom took time to honor the pioneering, pathbreaking, and truly transformative work of Mel Baggs, to whom “we [autistics] owe our movement a North Star…[and] owe a debt we can never repay.” Baggs, whose pronouns are sie (S-I-E, “see”) and hir (H-I-R, “hear”), lived a life that refused confinement to the realm of the “academic” and the “activist.” Hir incisive, invaluable critiques have transformed our collective understanding of disability justice, refusing assertions of subhumanity with radical joy.

It has been a year since hir death, and thirteen months since COVID-19 hit us in earnest. On April 18th, 2021, I will find myself Zoom-presenting a version of this article at this year’s Society for Disability Studies conference on Mel, hir life, and what I’m calling hir “experiential” framework for disability liberation. Now, as for the last year, I am mourning. I am also turning and re-turning to Mel’s words. Like many others, sie was key in my early exposure to what I now know to be “disability justice,” “Mad pride,” and anti-institutionalization. In the ongoing midst of this pandemic, in which existing eugenic efforts have been amplified and laid bare for all to see, I hold hir close to me as intellectual foreparent and disabled kin. I flap and chew and wring along to hir words (as I type, I hold a mint-green chewable stim toy in my mouth), in this case, drawing from hir most recently active blog, Cussin’ and Discussin’.

Mel modeled the power of language, not only as a tool for oppression, but also as a weapon of resistance. In particular, sie used hir lived experience to reveal the material impact of words, from (mis)diagnosis to deadly euphemisms. Sie also coins hir own words, describing aspects of hir life as a developmentally disabled institutionalization survivor that previously had no language. “Person-centered” disability service agencies center not the needs of clients, but the needs staff imagine them to have. The “Nice Lady Therapist” crystalizes white, middle class womens’ impulse to extinguish human emotion, especially when in “caregiving” roles. “Care” itself, sie reminds us, can be a form of violence, often couched in so-called “Snake Words”. Sie borrowed this term from Terry Pratchett (himself a notoriously well-loved figure among queer, disabled bloggers): if the r-word is an ungraceful rhino charging toward us, “special” is a cobra, tightening slowly.

Mel has never been silent, communicating, always, in a language of hir own. Sie assures abusive “care” workers and medical professionals that we, long figured as helpless patients, are watching, and wields rage as powerfully as kindness: “Some of you are nothing but cold-blooded manipulators. You know already what you do and don’t care. I will tell you this:  I see you. And most people in my situation are perfectly aware of you. My goal is to show the rest of the world what you do, so that you will be less able to do these things.”

Mel’s reclamation of language, sensation, and autonomy is key to hir critique of institutions. Sie follows Dave Hingsburger’s shorthand, “The Burrito Test,” to advocate a big-tent definition of what institutions are: can you get up in the middle of the night and microwave a burrito? If not, you’re in an institution. The Burrito Test, which was popularized both by Baggs’s work and Rabbi Ruti Regan’s blog Real Social Skills, reveals the institution not simply as a building, but a set of relationships, a social position, and a material condition. Home-based care is an institution. Homelessness is an institution. In hir post titled “Why I’d sometimes feel safer dying on a street corner than going to the hospital,” Mel makes this very observation, likening the hospital and the streets in their abandonment of disabled people.

The Burrito Test also extends to personal interactions, documents, and bureaucratic processes, all of which isolate and silence noncompliant disabled bodyminds. This occurs within and outside the walls of the “traditional” institution, whose own presence is far nearer than many would like to believe. In response, Mel doesn’t only use hir own “HCBS (Home and Community-Based Services) horror stories,” but weaves the stories of countless other disabled people, creating a collective archive of resistance to a system that silences us. We must “keep moving away from institutions. Because our lives depend on it.”

Here is the heart of Baggs’s brilliant experiential framework. Mel lives in the telling of hir life, in the assertion of hir personhood, and in the welcoming of others previously deemed mere “pile[s] of medical problems” into spaces of support. That is, Mel refuses to allow anyone to be “X’d,” a term sie borrowed from Madeline L’Engle’s novel A Wind in the Door. In the novel, this is a process by which someone’s soul is erased; in the process, the “Xer” loses their own soul, too. In real life, the “X’d” in congregate care die in numbers whose true extent, due to malicious bureaucratic incompetence, will never be known. George Floyd and Breonna Taylor, as well as countless others, were marked as “X’d” under white supremacy to excuse wanton police murder. So were Delaina Ashley Yaun, Paul Andre Michels, Daoyou Feng, Xiaojie Tan, Soon C Park, Hyun J Grant, Suncha Kim, and Yong A Yue, whose murders were justified using rhetoric that dehumanized Asians, migrants, and sex workers.

These struggles are inherently connected, in many cases overlapping. Mel links hir experiences to others’ experiences of “Xing,” but does so, crucially, without trying to “redeem” disabled people according to ableist standards of value. Sie was never far from that precarious place, the status of being a “patient who doesn’t matter.” Sie does not shy from the reality that hir bodymind, alongside others’, is marked as abusable and even killable by medical institutions. Sie extends no sympathies to doctors’ “tough choices” nor their pontifications on “quality of life.” Sie reminds us instead that these are deadly propositions.

We have been here before. On March 31, 2013–almost precisely seven years after writing hir blog post “If I am killed…” and almost precisely seven years before COVID brought the world to its knees–Mel, while hospitalized, wrote of being coerced into greenlighting hir own murder. Let me take that into active voice, borrowing from Lydia X. Z. Brown’s excellent summary of the events: medical authorities attempted to coerce Mel into greenlighting hir own murder, while Mel was suffering from gastroparesis. They attempted to deny Mel access to a feeding tube–that is, they attempted to starve hir to death–and, only after a flurry of calls from disability activists across the country and around the globe, relented to the demand to intubate Mel, which they did without anaesthesia.

What I hope to highlight in retelling this story is not only how Mel’s violent mistreatment becomes a basis for understanding the mass murder of disabled people through COVID-19 healthcare rationing policies, but also how none of this is new. Further–and this, too, is key–Mel’s life was saved in 2013 by hir own advocacy and relational connections. Hir fusion of the specific and the universal allowed hir to form vast disabled networks across identity, ideology, age, and location. Mel advocated tirelessly for the humanity of every single one of us.

Mel advocated for us, and so we are still here. We are here, and we carry within us Mel’s legacy. I speak of hir in the present-tense because sie is here with us, can’t you feel it? We find ourselves again and again in Mel’s stories, realizing not only that we are not alone, but that we happened, that we matter, that someone remembers us not as killable obstacles to progress but as whole, meaningful persons. While alive in body, Mel dreamed into existence an archive of interdependence and friendship: “I will no longer pretend that I am not trying to scrabble together some kind of meaningful life living on the ragged side of a nightmare,” sie writes, turning instead (in)to joy. When we turn to hir–especially “in these times,” in the face of exploding institutional violence and a new-old cohort of Snake Words–we turn, also, to ourselves, to a story whose continuation we guarantee through the act of remembering. Remember, Mel tells us, we have been living this whole time.

We hold on tight to our experiences. We hold tight to Mel’s. And we will grow old with them.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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When Obsessive-Compulsive Disorder Turned “Sane” – COVID-19 and Double Standards

A person grabs a door handle using a napkin

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19.

I woke a March ago to the cruel, familiar feeling of unsubstantiated terror. Anxieties of tenuous relation folded in on one another until I felt I was carrying a cardboard box of feeling twice my size on my back, and the box was covered in a near-illegible collection of narratives meant to put that fear to work.

This is the box of feelings that I carry day by day, the box I can’t surely set down even in sleep. COVID-19 fit easily in that box, with room to spare. With each sunrise I watched more peoples’ invisible boxes grow clear, heavy, and full. For now we walk together, but for me, crushing anxiety is far from new.

At the beginning of this, I called home to hear that my parents had established a small reserve supply of food and toiletries; they were keeping close watch of COVID updates largely restricted to Europe and the west coast. Just in case. We discussed my spring break plans: I was eager to get home, to have a break from campus. They looked forward to seeing me.

Several days later, New England colleges began closing, folding like dominoes. My – and the rest of this year’s class of 2020 – worst fears were confirmed by the devastating news that, until further notice, large-group meetings were cancelled, events postponed “indefinitely.” No senior ball, no end-of-year celebrations. No graduation. I walked half-lucid across campus to a chorus of panicked sobs, to chairs and desk legs screeching as students frantically packed by the administration-imposed deadline, initially presented without indication of possibilities for assistance. We were consumed by such collective fear, not only existential, but also personal.

In the span of a few days, we turned from social animals to deer frightened in the face of our own disastrous power. We asked: What if I bring coronavirus to my home? What if I am, by extension, responsible for the deaths of innocent others? What if I am responsible for the deaths of those I love; what if my selfish or unscrupulous tendencies destroy my life?

I’ve been asking these questions of myself since childhood. I’ve lived my life with a brain whose weirdness, in the wake of a pandemic, has gained (limited) legitimacy. COVID-19 normalized the responses I associate with my Obsessive-Compulsive Disorder (OCD) – not only the hand-washing or fears of contamination, but also the loud voice on constant loop in my skull that renders every possible disaster probable, and turns unavoidable catastrophes into mere results of my own carelessness. At its core, OCD is about concern and scrupulousness, about forces of fear that only irrational and time-consuming rituals can hope to mitigate. It is about washing your hands so that your loved ones don’t die.

I do not mean to say that OCD is only about cleanliness. That said, the quintessential obsessive-compulsive person is essentially one who follows best-practice in a pandemic: They stay home, hand-wash, don’t shake hands or hug, and sanitize their living quarters constantly. They presume, of necessity, that everyone around them is dirty and/or ill, that they themself are a vector for disease, and that they should thus avoid the germ-generating social milieu as much as possible. Rather than reduce these similarities to comparisons of obsessive hygiene, I want to point out the similarities between the lock-checker, the hand-washer, the hoarder, and more: all perform seemingly futile tasks out of a fear of death, or the unknown. We may even acknowledge that no behavior by itself will truly stop the doom we anticipate – those extra rolls of toilet paper will run out; even the most sanitized household is not entirely immune to a virus – yet we continue to do rituals that provide us comfort in the face of uncertainty and loss of control.

When the intrusive, catastrophizing thoughts of “I and everyone I love will surely die” enter our heads, they are accompanied by an “unless,” giving us a way to make sense of the abject fear with a purchase or pump of Purell. We hear about fears of shortages and so we respond by causing more, caught in an endless feedback loop in which our responses reproduce a problematic stimulus, catastrophe, a cycle without end.

I understand these fears intimately. I live them. I’ve long experienced panic comparable to the panic of the toilet-paper hoarder and the Purell-over-user, a panic that was until today blamed on my “defective” brain. I contended with my feelings nearly-alone, with none of the social grace afforded to those consumed by COVID-panic. Even as we count and wash our hands, even as we sanitize every surface as we leave it, I still feel like an outsider for my other, non-sanctioned obsessions and compulsions, which do not magically dissipate in the face of a pandemic. Just as clearly as we have seen the destabilization of the “rational/irrational” binary, we have seen another binary stay intact: while COVID-related obsessions and compulsions produce a permissible madness, others stay taboo as ever.

COVID has made parts of my weird brain en vogue and even prerequisites to good citizenship: today we worry whether a hand on our parents’ doorknob spells their doom. While I am glad, if nothing else, that sane people can access an understanding of my lived reality, I fear that this taste of terror will do nothing to facilitate understanding of quotidian madnesses, madnesses that will live on long after social restrictions have been lifted. After this mass catastrophe has abated, I anticipate remaining in the same space of isolation I have occupied since I was small. That is, I envision myself and my strange habits and useless worries receiving the same patronizing treatment they always have. And I envision the bulk of this patronization to continue to come from doctors themselves –– the very authorities whose declaration of pandemic (necessarily) inaugurated a compulsion-cultivating army of hand-washers and mask-wearers.

In these uncertain times, norms of rationality and irrationality have shattered. “Sane” and “insane” have proven to be malleable descriptors which rely on ever-changing social standards, not diagnosable truths. Still, I wonder what will become of us once this moment of collective madness is complete.

In even-numbered intervals I check the door-locks. I pace my room. I am not allowed to sit on my bed in my street clothes, nor touch my sheets without first having showered. I do this to avoid disaster, and it is as if the world has finally caught up with me. I check and check again. I will continue. And will you stand beside me? And do I get your grace?


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.