“Is there a way to end on a positive note?”
“This seems unrealistic.”
“Have you tried yoga?”
These were some of the comments I received in writing workshops regarding my work about disability, chronic illness, and neurodivergence. Often, I was the only student writing about living with disability, rather than using it as a cliché metaphor about being mad, blind, lame, or deaf, where disability was only present when it represented something else. Sometimes my classmates wrote about disabled characters, relying on crude stereotypes, or about disabled family members, focusing on the burden of caregiving or of loving difficult people. In these cases, disability was not at the forefront. Instead, it was being used as a plot device to convey either empathy for characters dealing with someone else’s illness or frustration at disability thwarting abled people’s attempts to live happy lives.
I was not represented in these works. None of my disabilities were visible. I was young. I was relatively successful. I loved and was loved in return. I was happy, except when I was not, but often this had little to do with being disabled and more to do with trying to survive in an ableist world. I did not want my existence to inspire pity in those who were not disabled, by which I mean I did not want to make others feel grateful they did not live a life like mine.
What I wanted was to write stories about the experience of living with chronic pain and the sensory onslaught of neurodivergence. I wanted to write stories about bodies and brains like mine without having to justify that yes, this really did happen and, yes, I really did feel this way, and no, I was not exaggerating to garner attention or sympathy. I wanted to be called what I was—disabled, chronically ill, neurodivergent—instead of sitting in workshops that insisted on using demeaning terminology such as “differently-abled,” “handicapable” and “special needs,” which imply we’re both helpless to our disabilities and yet somehow capable of overcoming them. I wanted to write about my crip community—our collective rage and exquisite joy and sharp humor—without abled classmates insisting I was generalizing. I was tired, I was in pain, and I did not want to spend my limited energy fighting for my place in workshops that didn’t understand me or my work.
Like many disabled people, I was skilled at masking. The abled world often does not want to accommodate us, and if we vocalize our pain, let alone demand access, we are punished. So we mask to fit in and hopefully succeed, though this comes at great mental and physical costs. I masked in workshop and on the page, dutifully following the writing advice I received in the workshop, even when much of it invalidated my lived experience.
I grew tired of writing the abled story of my disabled life.
But after a while, I grew tired of writing the abled story of my disabled life. I no longer wanted to translate my experience for abled audiences who often failed to understand—or even believe—my stories. In order to write, I needed to unlearn much of the advice I had encountered. I wrote my craft book, Nerve: Unlearning Workshop Ableism to Develop Your Disabled Writing Practice, about my experiences as a multiply disabled writer in order to help others who might need what I needed after so many workshops where abled writers insisted they knew best: strategies and methods to form a disabled writing practice. Along the way, I learned how to dismantle some of the most commonly received pieces of “feedback” in ableist workshops. Below is some advice on how to spot these comments, so you can dismantle and unlearn them too:
1) Disabled, chronically ill, and neurodivergent writers will often be encouraged to create work about these identities and little else.
When disabled writers include a small detail about disability in their work without it being the primary focus, workshop colleagues may call attention to that detail and insist it’s what the work is “really about.” This type of comment assumes the writer did not know their own intentions. Despite this common suggestion, it is possible for disability, chronic illness, and neurodivergence to inform a work without being the focus, just as it is possible for disabled writers to create work that does not include any discussions of this identity at all.
2) Assumptions about a writer’s identity or information from their previous pieces may be brought up in order to imply that this information needs to be included.
We do not need to consent to violations of our privacy and dignity.
When disabled writers do choose to disclose information about their identities in their creative work, workshops may focus their discussion on unanswered questions about the author’s diagnosis, asking invasive questions and speculating while the author is forced to sit silent. Workshops colleagues may ask us to include extensive information about our lived experiences and various disabilities, shifting the focus of our work to a medical report about our brains and bodies. We are expected to put our suffering on the page, to “show, don’t tell” what it is like to experience medical trauma. At the same time, we may be told to spare readers the details about our lived experiences that make them uncomfortable. But disabled writers do not need to shield readers from our suffering, just as we do not need to perform our trauma. We do not have to justify or explain every detail about our disabilities, treatments, and lived experiences for them to be accepted as true or valid or worthy of art, nor do we need to answer invasive questions on the page or in the classroom. Sharing our stories requires our consent, and we do not need to consent to violations of our privacy and dignity.
3) If writers choose to write about disability, they will frequently be told to do so with an optimistic tone.
We’re often told this suggestion is being made because the story is hard to navigate, difficult and upsetting to read. We may be asked, as I was time and again, to “describe how you find the courage to go on living,” as though our lives would be better off ended. The subtext here is that disabled people make abled people uncomfortable, and we must anesthetize our stories if we want to engage an abled audience. But why should we shoulder the burden of translating our stories for the ease and comfort of others? If even the mere facts of our brains and bodies are so upsetting to abled audiences, then perhaps these are not the readers we hope to engage with our work and certainly not the people we should be turning to for writing advice.
Similarly, disabled writers must resist pressures to demonstrate stoicism and grace above all else. This is not to say we cannot strive for these qualities in our lives and on the page, but rather that we must not allow abled others to reduce us to these qualities, must not accept that our stories are only of value if they imply that our lived experiences, full of frequent injustices, are easy to bear or devoid of unpleasant emotions. We do not need to revise our lived experience in order to make ourselves or our characters courageous and cheerful for the reader’s comfort.
4) Disabled writers may receive medical advice masquerading as craft advice.
Many times, the ableist need for optimism means requiring that disabled characters undergo treatment and prove their hard work, or at the very least, demonstrate hope. Because of this, we tend to receive all sorts of unasked for advice: recommendations to try meditation or essential oils, stories about a friend or family member or stranger from the news who benefited from some obscure treatment that the disabled writer ought to try. This “advice” implicitly asks us to prove we’ve tried everything in our power to be well. We’re expected to reveal this failure cheerfully and without criticism, certainly not mentioning that ableism is an inherent part of both the medical industry and of being offered unsolicited medical advice while we’re just trying to live our lives. Rather than succumb to calls for our work to provide inspiration—as though our lives are not challenging enough without the added pressure of needing to serve as a saccharine greeting card about looking on the bright side—we must remember that crafting our stories accurately is the ultimate act of agency. Resisting pressures to perform illness for others is a reclamation of our power.
5) Ableist audiences often want a triumphant recovery arc, or the promise of one to come.
As a result of points 3 and 4, workshops may encourage disabled writers to spend lengthy time discussing the possibility of recovery, as though each piece about disability should conclude with a magic cure or medical breakthrough. Alternatively, audiences will accept disabled stories that inevitably end in death, so long as the disabled character goes calmly and compliantly into the good night. Mostly, however, readers love a success story, meaning a story where disabled, chronically ill, or neurodivergent people rehabilitate and assimilate. In other words, where we become (or at least pretend to be) abled. But doing so requires the erasure of the reality for many disabled people, one where treatment and recovery are not always possible or even preferable, our unique identities intertwined with our disabilities and inherent to our sense of self. Implying our stories are only of value if we assimilate requires the eradication of our very existence. In a world where so many disabled people are denied access to public spaces, education, politics, and even healthcare, we cannot allow ableist workshops to erase us on the page, in the stories of our very own lives.
“Why not conclude by reflecting on how far you’ve come?”
“Can you show how hard you’ve worked to overcome this?”
“Can you spend more time explaining how this doesn’t define you?”
Years after my time in writing workshops, I still remember these frequent comments and still receive them from book and magazine editors. But if I were to revise based on this feedback, I could only conclude that I’ve come very far in ignoring advice like this—the kind that suggests my writing is only of value if I demonstrate how far away from my disability I have managed to escape. If I were to revise based on this feedback, I could only say that I have worked very hard—all my life—to navigate disability, chronic illness, and neurodivergence, all of which are difficult to live with, but even more so because they are rejected by an ableist world that refuses to accept or accommodate them.
I will no longer explain that disability does not define me, because it is a preposterous thing to ask of any writer about their identity. My disabilities do define me, and to pretend otherwise is to actively erase me—from society, from the writing workshop, and from my own work. Treating everyone the same is an ableist society’s convenient way to overlook that disabled people have different access needs, and thus rid themselves of the responsibility to educate themselves and provide accommodations. When workshops treat each writer and work the same, they mirror this injustice. Unlearning the expectations of the ableist workshop is an ongoing process, one that continues to help me write the story of my disabled life. I hope others in our community do the same, finding new ways to resist and reclaim.
