Disability in Dystopia

A Call, Response and Commitment

Like many of us elder millennials raised in the 80’s/90’s, I grew up believing disability was easily defined and always visible. Before I got sober, I thought about alcoholism in a similar fashion: I couldn’t be an alcoholic because I still had a job (for now) and wasn’t (yet) living on the street. I just liked to drink…until I didn’t and then I couldn’t stop, but even then, I didn’t believe I could be an alcoholic because I hadn’t yet reached the monolithic image of alcoholism with which I had been socialized. This kind of myopic thought process delayed my sobriety and, similarly, prevented me from seeing myself as disabled for most of my life.

It wasn’t until the fall of 2019 as I was struggling to walk alongside one of my best friends through a grocery store in Rochester NY, her using her cane and me leaning heavily on the shopping cart, that I began to have some language around disability. It took her turning to me as I kept talking about “injury” and saying, “you’re fucking disabled dude,” for me to finally realize it. It took someone I loved and trusted who identified as disabled (and who I could identify as visibly disabled) telling me I was too for me to accept it. It felt like a golden ticket insofar as I now had language for my pain and my limitations.

My pain was (and is) constant, and my abilities (and limits) ebb and flow. Some days I’m hiking, splitting wood or leg pressing 400 pounds for reps and I feel like a teenager again, some days I struggle to walk, to bend over, to reach for a glass or plate, to read, to type, to remember, to hold a conversation, to drive, to listen, to be in public space at all. This inconsistency made it difficult for me to conceptualize myself as disabled. I always just believed I was “recovering” until I realized that I had been “recovering” for half my life. In some ways, this shift in language from recovery to disability was offered to me at the exact right moment. It would be months later in January 2020, four months before the murder of George Floyd and the Minneapolis uprising, that I sustained a traumatic brain injury and would no longer be able to convince myself I wasn’t disabled.

I have a history of brain trauma, from car accidents, combat sports, my addiction, to my own experience of violence at the hands of the Minneapolis Police Department. However, until 2020 my daily life or quality of life were not obviously compromised on a neurological or cognitive level. It was after this head hit, where I heard a pop in brain and saw a bright flash, to then find myself on the ground and unable to move my hands that I began having issues with sounds and lights, developed severe sleep apnea, dystonia, memory and processing issues.

When George Floyd was killed four months later, I was still in a heavy brain fog and extremely sensitive to stimulus. Still, I joined my neighbors and went to the intersection of the 38th and Chicago (what would become George Floyd Square) to mourn and then to march to the third precinct. It was a familiar routine in Minneapolis and one which had begun to feel predictably ineffective over the previous decade. This didn’t yet feel different as the crowd walked slowly from the site of the murder toward the precinct, I went along with the throngs of people before abruptly stopping. I knew there would be a protest and I knew the police would begin shooting rubber bullets and tear gas and, as they do, aim for heads (the city would later settle millions of dollars’ worth of cases for blindings, brain injuries and shattered eye sockets and jaws of journalists and protestors alike). I had protested outside of the third precinct countless times since my early twenties when I still felt invincible. Now, I stood in the street unable to move as people passed me by. I could only think of my still very unhealed brain. I felt guilty, but I couldn’t keep going. What was I willing to lose?

As a result of my brain injury, I had already lost my job, I had lost my relationship, I had to cancel a series of shows from my book tour before covid cancelled the rest. I had been on unemployment and in a dark room for months. I was afraid to become further disabled. I turned away and walked against the crowd to my car to head back to the Northside. I sat at home the first few nights of the protests, still in constant brain fog, difficulty remembering, extreme sensitivity to light and with what had become a chronic and intractable migraine which has, five years later, yet to leave me. Each night my best friend with whom I lived at the time went out to join the protests, to chant, to render medical aid, to deliver supplies, and I sat inside knowing I could not risk getting a rubber bullet or gas can to the head. And then the first building went up in the flames.

There are often two memories of the fires of Minneapolis in 2020. One is that it was all outsider agitators and saboteurs that burned more than 1,000 buildings and only that. The other was it was only the righteous anger of the people rising up and all buildings were burned justly by a just cause. The truth is it was both. White supremacists attacked Black, Brown and Indigenous owned buildings, setting fire to cultural corridors and historic businesses. It is also the case that multi-racial cohorts of protestors and especially youth righteously burned down the third precinct, torched cop cars and well-known racist businesses. The latter gave me pride and hope. The former, made me realize what I was willing to lose.

As more and more white supremacist gangs, paramilitaries and individual actors sped around the city conducting drive by shootings, torching buildings or simply terrorizing residents, I decided I was not willing to get hit in the head with a rubber a bullet, but I was willing to get hit in the head with a real one. I was not willing to become more disabled, but I was willing to die. I don’t think this sounds macho or heroic to say, and I hope no one interprets it that way. In truth I was already suicidal and I don’t think heroism should be measured necessarily by one’s sacrifice or potential sacrifice but by one’s impact on the lives of people in the present and future. I was unwilling and afraid to protest. I became willing and far less afraid to get into high-speed chases, potential shoot outs, try and put out burning buildings the overstretched fire department couldn’t get to and run through smoke filled apartment complexes evacuating residents.

(The Fade Factory barbershop fire, West Broadway 2020)

For a few weeks I ran completely off coffee, adrenaline and love for my neighborhood. Ironically, while I felt emotionally ruined, I felt the best physically I had since my TBI. I thought I had completely healed as almost all of my symptoms went away. When things died down and the power vacuums released returning a constant state presence across the city, my symptoms came back, and I realized it was just the adrenaline. I was not, in fact, healed. And soon I would become worse.

Fast forward six months and I lost the ability to read. My eyes could no longer track words on the page, my light sensitivity got worse, and I could barely leave the house. Fast forward to 2025 and I have, outside of work, rarely gone out in years minus a few stretches of good health for weeks at a time here and there and a glorious three months in 2022 followed by a sharp crash. To make matters worse I have gotten four more concussions since 2020, one of which left me with poor balance, reduced motor skills and a slur when I get tired. Now Trump has returned to the White house andI am less physically able, more tired, more anxious, more protective over my head and less confident physically and mentally than I was in 2020. And where we are headed is far worse than where we were.

After the uprisings in 2020, my friends and I would say to each other that we thought that summer had just been a dress rehearsal for what’s next. We knew Trump, or someone like him, would be back and another mass event like that summer would take place. It was not the first time such a moment had occurred; it certainly would not be the last.

I think of all of this now as we enter Trump’s second term and hold our breaths and prepare for conflagrations of all kinds. What is my role as a disabled person? I still want to chase Nazis in the street, stalk them through the alleyways with my gun and flashlight drawn, put out fires and run through buildings evacuating residents. All of that can be romanticized, it can be mythologized. When it comes to all that again, I’ll give it a try, but I don’t know how long I’ll last and if I’ll be useful in in that way with my limitations. I might even be a liability. I ask myself then, where can I make the largest impact? What is my role? What are any of our roles, particularly those of us who are not able to participate in the most visible and physical and most socially accepted or celebrated acts of resistance?

(Diagonal from third precinct)

Before I ever got into a fight and before I ever went door knocking or went to a political rally, I wrote. My first time canvassing and door knocking I was thirteen, but before that I was a storyteller and wrote my own adolescent brand of political commentary and critique on Live Journal (the substack of 1999). Writing may not be direct action as we generally understand it, but it is an action. It does build and illuminate the world in which more direct, material action takes place. It does better guide and define that action, its stakes and impacts. If it were not one of our greatest tools, the mass graves and prison cells of the the twentieth century’s autocrats would not have been so full of writers.

Even so, writing is only one mode of action and it cannot be the only one. It will take more than writing and more than fighting and more than mutual aid and more than protest and boycott and certainly, I hope we all know by now, far more than electoral politics in a co-opted and crumbling democracy which cannot even call itself that any longer with a straight face. Perhaps it never could.

I have no answers for me or for you, I am not a disabilities scholar. I still refer to myself as disabled and not the more appropriate “person with a disability” because most days I don't’ feel like I have a disability, I feel like my disability has me. Often by the throat. What I lack in answers, however, I make up for in commitments.

I have a commitment to finding ways to not only fight against our dystopian present but toward a utopian future to the best of my abilities. Some weeks my abilities will allow me more and some weeks less. Some weeks my abilities will allow me to engage in physical action and some weeks they will not. Some weeks I may be putting out fires and speeding through the streets like I did five years ago and some weeks I will be writing and studying to provide new language and frameworks. And some weeks, during a bad flare up, I may need to simply rest so I can return to the work.

I don’t believe rest or self-care are radical acts, even for those whose rest and self-care are an affront to a White supremacist, capitalist, ableist, sexist, multi-phobic system. Rest is necessary, caring for ourselves is necessary, we all must rest and engage in self-care… AND in our context, they are radical only to the extent they increase our capacity for action (broadly defined). If rest and care remove us away from political action and the political arena, then they are in fact laboring on behalf of systems of harm. In this way I also commit to caring for my body and needs so that my body can be a more effective and long-lasting tool in service of the liberation of bodies at greater risk and with more restricted ability than mine.

(George Floyd Square, June 2020)

The world we want to build, one which is more accessible to all, requires a multi-faceted movement in which each can contribute to their own abilities, and each can be supported to their own need. During the uprisings of 2020 in Minneapolis some of us protested, some of us put out fires, some of us engaged in community protection and armed defense, some of us rendered medical aid, some of us delivered material goods or provided food and water, some of us assisted in childcare, some of us collected donations, some of us ran makeshift shelters, some of us wrote, some of held space for mourning and visioning, some of us made art, most of us did many of these things. Part of my work going forward will be my written word. It was how I entered the political arena. It was how I entered public life, and it is how I remain, as much as I can, a part of it now even as my disabilities have rendered my way of being mostly incommensurate with modern life.

This substack will become part of my work. Essays and reflections, poems and polemics, reportage and ruminations. I hope you’ll follow along, and I hope I can offer something which makes analyzing and surviving these next days, months and years a bit more manageable and if not manageable then at least comprehensible.

I am grateful you are here, and I hope you’ll share these words as you are moved to should they move you. That is why I write, to move people. To move people to language and to move people to action. So let us each honor our abilities and limitations, and within that honoring find modes of action in which we are most effective. Not all of us will be well enough to protest or to march, but that does not mean we cannot fight. Our institutions have failed us. Let’s not fail each other. I offer my body to the degree it can be effective when the political moment demands it and offer my words now. Everyone matters and there are many ways to resist, to dream, to build. We need them all, and we need us all. let’s fight and love like hell in all the ways we are able.

In solidarity,

Michael