Personal Essay – Disabled Writers

Coming to understand myself as disabled has been a far from linear journey, much like other realizations that have been particularly meaningful in my life. In some ways, that process occurred alongside the reckoning of my identity as an artist, during the height of the quarantine measures for COVID-19. While I have struggled with back pain for at least a decade, sleep issues following white supremacist workplace harassment in 2016, and migraines since my teens, it took the closure of my chiropractor’s office to flatten the curve last summer for me to do the much-needed work to unpack my own internalized ableism about being disabled. It forced me to realize that I deserved the same compassion I pride myself on providing for students with disabilities in my day job as a social worker in the scourge of academia.

All too often, health can be viewed as an achievable goal and moral obligation for all folx, but I know the reality of how chronic health concerns of migraines, back pain, and sleep issues make that impossible. Especially when I navigate the medical-industrial complex in my fat brown body, this is further complicated by xenophobia, white supremacy, misogyny, fatphobia, etc. and I understand the need to state these matters directly to those who fail to provide appropriate care. Years ago, that meant telling a doctor that seeking birth control was actually a valid reason to make use of his walk-in clinic when I was told that I should have gone to the public health unit, as I outlined how the pill had long regulated my menses to reduce heavy blood losses that had required iron shots, but folx deserve to have their contraceptive needs met, regardless of why.

I deserved the same compassion I pride myself on providing for students with disabilities in my day job as a social worker in the scourge of academia.

Since a decade as a social worker has taught me that I have little control over getting those in power to address rampant oppression in the body I inhabit, I pour my efforts into unlearning ableism to give myself the respect that I have always deserved in these ever rigged systems. As a freelance writer, that means acknowledging the reality that I do not always feel well enough to write on a daily basis, which I must take into account when accepting writing assignments, but that can be especially challenging when these opportunities have not always been offered. Despite my attempts to secure paid gigs for nearly a decade, many publications finally expressed some semblance of interest in commissioning BIPOC writers following last summer’s shift towards more willingness to reckon with the longstanding gaps in racial justice, and the most oppressed of us know that little has changed despite this online appearance of progress.

Before that white supremacist workplace harassment stole my nightly slumber, I would not hesitate to work into the wee hours of the morning or watch something disturbing late into the evening, but now I know and do better. Given how poor sleep can easily fuel a migraine, especially when contending with hormones during my menstrual cycle, I have a selection of podcasts saved in my Stitcher app under the title, “Okay Before Bed” given how little this world caters to fat brown disabled women. While I still make every effort to think critically, including listening to perspectives from folx with lived experience of marginalization to continue to be the most anti-oppressive social worker I can, I do so at other times than when trying to sleep as heartbreaking stories make that difficult, and I no longer feel the need to harden myself in response to these harsh truths even if it means that I shed more tears than before.

In terms of the freelance work I accept, I try to be equally intentional, as I recall how quickly the triumph over my highest per-word rate yet vanished when an editor changed my reference to white supremacy to “cultural racism” which resonated with no BIPOC folx that I could find. Ideally, I would always get to explore gigs that truly nurture my soul, like when I got to facilitate Sustainable Resistance for BIPOC Folx therapeutic writing workshops for Scarborough Arts, which was a rare opportunity to combine my passion for Social Work and writing. Instead, I have lived the reality of white fragility’s violations of my personhood far too often as both a social worker and a writer to still be as naive as folx with epic privilege expect when they demand performative hope from those of us who are much more oppressed and well aware of it.

I recall how quickly the triumph over my highest per-word rate yet vanished when an editor changed my reference to white supremacy to “cultural racism” which resonated with no BIPOC folx that I could find.

Beyond the labour that I get paid for, there is also unpaid but necessary work in looking ahead and reconciling that I am unlikely to sleep well when a perusal of my calendar app fills me with dread, like when I know that my late grandfather’s birthday approaches, as I am well aware of the benefits of navigating less assignments alongside the grief that lingers decades later. In those moments, I convince myself to negotiate deadlines that are further away with editors I can only hope will consider my needs, as I take note of those who have proven less than accommodating, and instead work at strategy by some means with that newfound knowledge. As much as I resist, that sometimes also means taking a step back from the unpaid labour I remain keen on doing to support oppressed folx, whether in a formal role, like serving on a committee for an ethnic agency, or my time informally disrupting the problematic status quo.

While I would be lying if I said that I never doubt my writing abilities, I am getting better at understanding how often those feelings of apprehension about my work stem from feedback from folx who are minimally invested in challenging their complicity in extremely oppressive power systems. At those times, I remind myself of wisdom from Audre Lorde that the master’s tools will never dismantle the master’s house, and reflect that part of continuing to write truth to power is accepting my humanity even when I cannot be as productive as capitalist structures demand.

To do this work, I must continue to unlearn the inherently ableist colonialist messages from my Trinidadian childhood that I need “to burn the midnight oil” to be “the cream of the crop” as those do not bode well for disabilities, much less those of us in BIPOC bodies often deemed highly disposable by white supremacy. While challenging taken-for-granted beliefs takes time and effort, it is much-needed labour and well worth the work as it allows me to give myself permission to take a break from writing continuously for hours or stop working and get rest when I feel tired. Especially when up against folx and structures that fail to see me as worthy of empathy, it becomes even more crucial to make that my priority or I may struggle further if back pain exacerbates, which often results in poor sleep, and dramatically increases the odds of contending with a migraine the following day. And sometimes it is spite that keeps me going the way others rely on hope because my art deserves as much space as the privileged writers whose work received praise long before more talented BIPOC folx ever received a chance.

Krystal Kavita Jagoo is a social worker, artist, and educator who prioritizes equity in all her work. Her visual art was featured in Pandemic: A Feminist Response, and the zine, CRIP COLLAB. She has taught “Justice and the Poor: Issues of Race, Class, and Gender” at Nipissing University, facilitates Sustainable Resistance for BIPOC Folx writing workshops and will teach the Writing for Social Change course at the Loft Literary Center. Her work has been published by Huffington Post, Healthline, MedTruth, Verywell Mind, Prism, Canadaland, Community-Centric Fundraising, Giddy, etc. She can be found on LinkedIn.

The internet is a confusing place to be disabled. Disabled bodies are more visible than ever, and disabled voices are heard and amplified by social media. As a result, nearly everyone has a superficial understanding of disability, gleaned via progressive sportswear ads, public health campaigns, and tasteful, well-lit film portraits. But there is little understanding of what it is actually like to live in a body that requires special care and attention. The emphasis has been on normalization, which invalidates any meaningful discussion of difference.

I am an artist and I am disabled. I haven’t always been able to merge those identities. I used to emphasize the former at the expense of the latter. I shared my drawings and held my tongue. I got used to letting my work—and my internet presence—speak for itself. I got used to watching new acquaintances pull out their phones and look up my social media. In their eyes, I underwent a realtime transformation. My career rendered me valuable in a way that my personality couldn’t. I drew for hours every day, stubbornly ignoring the ache in my spine and numbness in my hands. My skills improved as my body fell apart. Pain infiltrated every aspect of my life, from my daily routine to my greatest ambitions. It was no longer something I could conceal, and so I began to tell the truth.

It took me a while to adjust to being publicly disabled. I learned through trial and error never to frame my disability as something that might prevent me from performing. My disability was to be an artistic theme, an impetus, not a barrier, to creativity. I began the work of transforming my personal struggle into neatly-packaged mass entertainment.

I too must maintain a careful balance in order to sustain my career.

This new breed of public figure—the disabled influencer—is expected to tread a series of fine lines on the path to success. Her struggles are significant, but she inevitably triumphs over all of them. Her accomplishments are remarkable, but only in light of her disability, and not by able-bodied standards. She has her ups and downs, but she always ends her stories on a positive note. Ultimately, she is grateful for her disability, because it has taught her so much. It has given her access to a store of knowledge reserved for the wretched of this earth. Generously, she is willing to dole this knowledge out to you day by day, caption by caption, so that you can learn all the lessons without actually experiencing the adversity.

I too must maintain a careful balance in order to sustain my career. I must never appear too disabled, and conversely I must never appear so competent that my disability is called into question. Whenever I share a new drawing, my inbox fills with messages asking if I’m “better.” (I have an incurable and degenerative disease; there will never be a “better.”) Whenever I take time off, I must answer for that as well. “I miss seeing your art,” they say. “Where are you?” they implore. “Come back,” they demand. I see these messages and feel as though I’m seeing my own memorial from beyond the grave. And then I do what I will always do: I come back.

Making art for a large audience is a trade-off. In my case I traded anonymity and creative freedom for external validation and financial security. In the beginning, with only my friends and family for an audience, I explored all sorts of media—painting, collage, charcoal, or whatever I gravitated toward on a given day. I gradually narrowed it down to what performed best online. The dream of becoming a freelance artist was so appealing that there was nothing I wouldn’t sacrifice in pursuit of it. First I gave up my time, then my agency, then my self-esteem, and finally my health.

By the time the health problems began, I had already sanded down the edges of my life to fit within the influencer mold. I had been working from morning until night, posting religiously, promoting myself shamelessly, and drawing pictures that sold well but didn’t excite me—mostly baby animals. I was resigned to paying my dues.

My eyesight was the first to go. The ophthalmologist said I hadn’t been looking up from my work often enough to exercise my full range of vision. I received my first pair of glasses. Then my hands started giving me trouble. It felt like I was drawing underwater, like some invisible force was pushing back against my hands, resisting their movement. It became difficult to use my phone. Texts took ages to compose. My sleepy fingers failed to keep up with my inner monologue, and I watched them move in slow motion, the signal of my thoughts buffering like a film on bad wifi.

Then came the neck pain. At first, I attributed it to poor posture and overworking. But when I finally got a diagnosis, I learned that what I was dealing with was congenital. I’d been born with a spinal condition that would have emerged eventually, no matter my profession.

I traded anonymity and creative freedom for external validation and financial security.

At the time of my diagnosis, I was new to “influencing.” My following had expanded from a few thousand to over 100,000 in a matter of months, following a series of viral drawings and features on high profile art accounts. My inbox was flooded with requests for portrait commissions, brand partnerships, and tattoo designs. It was impossible to conceptualize the fact that my thoughts would now be broadcast to complete strangers, people who wouldn’t recognize me if I passed them on the street. My audience was larger than the population of my home city, and yet I still treated Instagram like a group text, publicizing my emotional crises while still in the throes of them.

So when my doctor sent me a scan of my neck, I posted it online. It was the most intimate image of myself I’d ever shared—it showed the very shape of my brain within my skull. The response was immediate and overwhelming. As I scrolled through dozens of messages, I was confronted with a wealth of unsolicited and dubious medical advice. I had been hoping for emotional catharsis, but I was promised much more than that: I was promised a cure.

It took me hours to sort through the cures, which often contradicted one another. I was told to cut out dairy and also to drink raw milk, to take psychedelic drugs and to stay sober, to go vegan and eat only red meat, to get invasive surgery and avoid mainstream medicine altogether.

I tried more of these than I care to admit. I spent hundreds of dollars on supplements, books, diets, and exercise equipment. I made a chart to document my progress on a variety of scales—pain, energy, mobility—and taped the paper to my living room wall.

The results were far from conclusive. The chart looked more like an abstract artwork than the linear progression I’d been expecting. In the end, I felt about the same as I’d felt before trying all the miracle cures. The only significant change was that I was now spending much of my time coordinating my self-treatment. Just as I had done with my art, I had placed my disability in the hands of strangers on the internet and allowed their judgment to eclipse my own.

The title of “influencer” is misleading. I wield far less influence over my followers than vice versa. To them, I am a fleeting image on a screen, a few words skimmed and forgotten over the course of a day. But to me, my followers are everything. They determine my income, my outlook, and my creative choices. My career does not exist without them.

My followers encounter my writing as an impersonal announcement to the wider world, but their writing is personal and directed exclusively at me. I am a lone target, impossible to miss, a receptacle for the tastes and opinions of a hundred thousand people. I am tasked with digesting this noise to produce entertainment.

These days, I no longer feel caught between two incompatible selves. My disability informs my art and vice versa. But both remain private experiences. Sharing them does not render them shared. Sharing only creates a false sense of collaboration—art as democratic process, self-care as team sport. Like many disabled people, I have used social media to let the world in. The challenge is in determining when and how to shut it out.

August Lamm is an artist and writer from Connecticut. She illustrates for clients around the world in a pen and ink crosshatching style inspired by Old Master etchings. She is currently working on a memoir about her experience as a disabled artist.