My protagonist is disabled, I am not.

This originally appeared as a post on the Women Writers. Women’s Books Facebook Page, May 1, 2024

My second novel, Unswerving, published by the University of Wisconsin Press, is about a young woman trying to rebuild her life after she’s paralyzed in a car accident. Estranged from her family, Tave gradually uncovers her inner strength and finds a new home within the disability community, discovering joy in the world of adaptive sports, and meeting other characters with disabilities who are leading productive lives.  

Although the specifics of Tave’s situation are fictitious, the novel is inspired by my many years working as a spinal cord injury nurse practitioner. I wanted to create a character who defies the ableist stereotype of people with disabilities as tragic victims. I wanted to avoid the tropes of either suicide or miraculous cure, offering instead a realistic yet positive portrayal of life with a new onset disability.

Literature and popular culture play a key role in how any minority group is seen, and this is important work. But over the ten years that I worked on the novel, a burgeoning #OwnVoices movement has emerged, highlighting the importance of under-represented groups telling their own stories. Tave, the main protagonist in this novel, is disabled and I am not. Is this my story to tell?

“Writing the other” is a hot topic. Nisi Shawl and Cynthia Ward’s 2007 book of that title spawned a plethora of workshops, websites, blogs, podcasts, and a Facebook page devoted to the issue. Can White authors write Black characters? Should male writers have female protagonists? Or must every writer stay in their lane, write only “what they know”? Do we have to shun Anna Karenina now, because Tolstoy was a man? No, the consensus goes. Write what you don’t know but do it carefully: do your homework, avoid stereotypes, avoid token representation, and use trusted sensitivity readers to make sure you’re doing it right. 

I felt well positioned to write this “other.” My years in rehabilitation nursing had allowed me to witness the daily realities people with disabilities confront. This includes micro-aggressions such as being considered incapable of ordering for oneself in a restaurant or being bombarded with unsolicited advice on “cures” from strangers, as well as more consequential barriers, ranging from soap dispensers being too high in public bathrooms, to inaccessible entrances or obstructed wheelchair ramps, or even worse, healthcare professionals making assumptions about a life being “not worth living” and therefore not warranting treatment for easily reversable maladies such as urinary tract infections.

The disrespect given to people with disabilities led also to a devaluation of my work. In the large hospital system where I spent most of my career, my patients were never chosen for the glossy ads on city buses that touted the medical center’s “excellence”—even though our rehabilitation center was one of the best in the state. The hospital wanted to showcase glowing pregnant women or youthful-appearing heart-attack survivors, not patients who looked like mine. And strangers I met at parties would grimace when I told them what I did for a living; oh, that must be depressing.

No, it was not depressing. I was privileged to witness the incredible accomplishments of my patients as they forged new lives for themselves. I think of the nineteen-year-old, paralyzed by a bullet as an innocent bystander, transformed from an angry young man, sitting scrunched, hoodie up, to eventually become a successful wheelchair-basketball player running a foundation helping other victims of gun violence. Or the young woman paralyzed in a car crash, overwhelmed and anxious, who later went back to school, qualified as a paralegal, married, and had a baby.

But despite this experience, I knew I needed sensitivity readers. I asked two friends, both women with quadriplegia, to read an early draft of the manuscript and they generously provided feedback. They both validated the authenticity of the point of view character, but they did offer suggestions. I had wanted to portray the realities of living with a spinal cord injury, and not gloss over the challenges, so in one scene my protagonist has a bowel accident. But one of the women suggested this fed into stereotypes; people without disabilities have accidents too. Point taken. The novel now includes a scene where a nondisabled character doesn’t make it to the bathroom in time.

In recent years, talented writers with disabilities have emerged, producing memoirs such as those by Judy Heumann, Alice Wong, Rebekah Taussig, Keah Brown, and Shane Burcaw, to name a few. They proudly claim their identity as disabled voices, sharing stories from their day-to-day lives and defying assumptions about their lack of agency. Recent fiction by writers with disabilities include work from Anne Finger, Susan Nussbaum, and Nicola Griffith among others, and I’m sure more will come. I am in no way trying to usurp that space.

My novel has a secondary protagonist, Beth, a dedicated physical therapist on the rehab unit who becomes over-involved in her attempts to rescue her patient, Tave, highlighting both the rewards and the inherent risks of the work. I hope readers gain insights into the world of rehabilitation, work that is challenging, yes, requiring great skill and dedication, but immensely important and fulfilling.

Oh, and did I mention that both Tave and Beth are lesbians? Nothing “other” about lesbians for me. I came out over forty years ago. Lesbians come in all shapes, sizes, and abilities.