I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.
I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.
–– Mel Baggs, 2014 [x]
It feels as if death creeps but never captures. This is especially the case with disability, a condition that appears always-already approaching death, pulling death by the hair into the abled, healthy world. Making the whole world see its unsightly face. Disability says, “kill me if you must but I will fill the space I left with brutal evidence too loud to ignore.”
Yet death occurs, even as healthy bodies attempt to disappear it alongside the bodyminds they warehouse and abandon. A pandemic such as this one is a prolonged encounter with this reality, pressing and pressing against the trappings of normal, healthy life until life cannot contain it. And then it takes. We will all, inevitably, lose someone, if we ourselves are not lost.
About two weeks ago, it was Mel Baggs, 40: blogger, activist, writer, role model par excellence. I didn’t know hir personally, though I felt as if I did. I wish more than anything that I might have told hir how much sie meant to me. This is a universal wish, I know, and it’s completely unfulfillable. I could have spoken to hir ten thousand times. Grief knows no enough. There is always the once-more and its shame.
Mel lived every day in direct defiance of death. As in, laughing heartily and heavily in the face of death, all between poems and blog posts and crochet patterns. At the nexus of multiple forms of oppression, sie was surrounded by unceasing mutters of unworthiness, currents of ableism, saneism, (cis)sexism, classism, and fatphobia. These continuously threatened, and even actively attempted to take hir life. Sie refused to be silent in the face of such injustice.
Sie was unique in hir situation, but unfortunately, not alone. It was from hir that I learned what twenty-first century eugenics looks like, first through hir insightful discussions of violent medical ableism and later through their wanton affirmation: in 2013 Mel faced widely-publicized medical pressures –– ah, suggestions –– to forgo a life-saving feeding tube. Citations of “quality of life” –– grounded in a “commonsensical” understanding that “severely disabled”* people are better off dead –– were frequent. Mel refused to give hir life up, and medical dominance by consent quickly turned to dominance by coercion: only through a flurry of phone calls, publicity efforts, and multi-state on-the-ground efforts did the disabled community save Mel’s life.
It was experiences like these that directly informed Mel’s analysis of power, shrunk to bite-sized chunks the size of a single hospital, a single room. Disability, sie argued, was something of a “ground zero” for epistemic violence: all other forms of oppression are grounded in an a priori assumption of sickness, incompetence, madness, or other form of bio/psychological inferiority made legible under an ableist system.
As such, the doctor-patient relationship and the aide-client relationship proved a fruitful basis for Baggs’s social commentary, especially on the epistemic imbalance between the sick person and their all-powerful “caregiver”. Again and again, sie also resisted not only the belief that no good scholarship comes from outside academia and from within the life of a mentally disabled person, but also provided pre- and non-academics the language through which to know ourselves. Including me.
I discovered Mel through hir Tumblr blog, which at the time had the username “youneedacat” but has since changed to withasmoothroundstone. It must have been around 2011, and I was new to the disabled Internet, having just seen Julia Bascom’s seminal essay Quiet Hands and since embarked on a reverse-bibliographic adventure through a massive network of autistic and otherwise disabled bloggers. I knew I was autistic but no doctor had named me. I knew with increasing certainty that womanhood was, for me, an untenable future. I did not know how to shape this awareness into something readable, nor was I sure I was an author who deserved to be read.
It was through Mel, among others, that I learned the devastating beauty of disabled, neurodivergent, and Mad lives. In delicious, long-winded yet plain paragraphs sie attributed to hir hyperlexia (and which I equally attribute to hir passion) Mel gave me my truths with such humility it was as though I had known them all along. Not only this, but (I am somewhat ashamed to admit) Mel taught me who and where my disabled comrades truly were. They were not the self-described “aspies” whose collective masturbation to their own superior intelligence and high-functionality perpetuated a eugenics of its own. My comrades, I learned, refused intelligence and functionality as forms of measurement. They enacted this refusal by producing vital knowledge through “illegitimate” digital means. We form alliances not based on what we are able to do but instead on the grounds that each of us has an infinite capacity to dream of a better wor(l)d.
Mel was the first person I had seen use the word “genderless” to self-describe, gesturing not to a bureaucratically-imposed “Other” option in addition to “Male” and “Female,” but a present absence. When asked to “pick from a list of genders” Mel refused the grounds of the question. Sie modeled a path to the gender I am (not) today: a gender-agnostic, a post-gender, a gender against gender and especially against the cold probe of medicine. Hir relationship to gender, to pronouns, and to other signifiers was ambivalent and deeply informed by hir disabled bodymind. Hir greatest material ties and the image to which sie returned in both prose and verse, were trees:
And you can hear the redwood sorrel talking to each other. They are tiny plants. They look almost like clovers, but they are red on the bottom. They taste citrusy. But what is important is they live in big clumps, they can carpet the entire floor of a forest if given half the chance. And if you are really really quiet, and really really listen… listen with your whole body, not just your ears… then you can hear the way they talk to each other. They whisper. The wind whispers through them, even a slight breeze. Nobody pays them much notice, because they are on the ground, and everyone comes to see the redwoods. But next time you’re in the redwoods, listen to the redwood sorrel. It knows the secrets of the forest floor, of the soil it is so close to. Those are secrets worth learning.
–– Mel Baggs, 2014 [x].
I do not have enough words in me to describe how important Mel was in making me the person I am. Nor do I have enough to describe the sheer impact Mel had, and will continue to have, on generations of disabled people –– including other idols of mine, like Julia Bascom herself. Mel helped to awaken in me and countless others the unstoppable urge to seize the discourses that make us in two balled fists and shake, and shake, and shake, and stim loudly into the forever they have left me with.
* Queer disability scolar Robert McRuer explores the radical possibilities of “critical queerness” and “severe disability” in “Compulsory Able-Bodiedness and Queer/Disabled Existence.” You can find it in The Disability Studies Reader, 2nd ed. (link is a direct PDF download).