Body Narrative: Disability

disability284The only disability in life is a bad attitude.

—Scott Hamilton

We are constantly adding to the narrative of our bodies. Every bump, scrape, bruise and cut alters our physical shape—and, as our bodies transform, so too do the ways we see ourselves, others, and the world around us.

Nowhere is the profound relationship between the body and one’s perception more evident than in the writing of disabled authors, who have used their works to convey the physical and emotional struggles people with disabilities face each day. Because disabled people often lack access to public forums that able-bodied citizens take for granted, writers occupy an especially crucial voice in the disabled community. Beyond exposing the real-life struggles people with disabilities face, these authors lay bare the stereotypes and tired clichés that have long accompanied disability—with the ultimate goal of reinterpreting how disabilities impact one’s identity and creative spirit.


What is Disability?

Disability is defined by the World Health Organization’s website as “impairments, activity limitations, and participation restrictions….” Additionally, “[D]isability… reflects an interaction between features of a person’s body and features of the society in which he or she lives.”

In less strict terms, disability has been defined many different ways, and countless authors have taken to page with the goal of complicating and clarifying the term for readers.

For example, Cheryl Marie Wade—the director of Wry Crips Disabled Women’s Theater Group and solo pieces such as “A Woman with Juice”—stated in an interview that disability was a kind of “ugly beauty” that allowed her to discover the unique power of her body, which had been severely disfigured by rheumatoid arthritis. “By writing about my body and about what I call the ‘ugly beauty’ of disability, I began to like my body,” she explained. “I do mind the pain and the limitations, but I don’t hate the actual physical differences anymore.”

Likewise, in American poet Neil Marcus’ poem, “Disabled Country,” he claims that disability is far more than a physical limitation; rather, it is a fluid sense of identity, a compass by which to finds one’s place within the outside world. The poem opens with these lines:

If there was a country called disabled,
I would be from there.
I live disabled culture, eat disabled food,
Make disabled love, cry disabled tears,
Climb disabled mountains and tell disabled stories.

As the poem goes on, Marcus expands on his analogy of disabled persons living in another land and speaking another language, showing the reader precisely how difficult it is to live in a world full of and designed for able-bodied people. However, Marcus ends his poem on a hopeful note, moving away from a feeling of alienation and towards one of acceptance:

In my life’s journey
I am making myself
At home in my country

Disability and Creativity

In a testament to the body’s power to shape perception, Marcus’ poem reveals precisely how symbiotic the relationship between one’s body and one’s art truly is.

This issue is one that the author Nancy Mairs, who often writes about how multiple sclerosis (MS) has affected her body and her writing, describes perfectly in her essay, “Carnal Acts.”

Discussing a time when she was asked to speak at a small liberal-arts college regarding how she copes with MS and how this disability has helped her discover her voice as a writer, Mairs writes:

How can I yoke two such disparate subjects into a coherent presentation, without doing violence to one or the other, or both, or myself? […] To ask how I cope with multiple sclerosis suggests that I do cope. Now, ‘To cope,’ Webster’s Third tells me, is ‘to face or encounter and to find necessary expedients to overcome problems and difficulties.’

Mairs’ difficulty with this word, which assumes that disabilities are a problem that can be easily and expediently overcome, is a prime example of Marcus’ argument that disabled people live in an entirely different world than the able-bodied. Yet, rather than seeing her disability as an obstacle she must conquer to succeed, Mairs asserts that her disability and creativity are inexplicably tied together.

As for ‘finding’ my voice, the implication is that it was at one time lost or missing. But I don’t think it ever was,” she writes. “Forced by the exigencies of physical disease to embrace myself in the flesh, I couldn’t write bodiless prose. The voice is the creature of the body that produces it. I speak as a crippled woman. No body, no voice: no voice, no body.

With a life so deeply influenced by disability, the visceral power of Mairs’ prose can only come from the voice she describes here. She finishes this section with a clever nod to the connection between her MS and her writing, explaining that this voice is something she knows all the way down to her “bones.”


Disability and the Able-Bodied Gaze

Disabled people see their disabilities reflected in the eyes and body language of able-bodied people every day. In Dr. Temple Grandin’s book, Different Not Less, she explains this feeling in the following way:

In coping with illness, my struggles with disability ran the gamut of things I was born exposed to along with things I came into contact with later in life. I experienced feelings of inadequacy, self-doubt, worthlessness, and inferiority, anger, and sadness in the process of overcoming and working towards living a life beyond illness disability.

The desire to escape the stigma of disability is a common theme among disabled authors, as seen in the works of poets Stuart Sanderson and Linda Cronin. In Sanderson’s poem, “Maddening,” for example, he addresses an able-bodied female character on the beach:

Why can’t you see me?

I see you, in your bikini,

My eyes touching your sexy body.

Look at me! Look at me!

To you, my wheelchair is my body.

And your bodyfriend is made of muscles and oil.

I don’t mind, I understand.

But once, I would like your eyes to touch my body.
The dual desire for and avoidance of the able-bodied gaze also appears in Cronin’s “Flash Essay On: Beauty and the Beholder,” in which the poet muses about a “Spanish Romeo” who tells her name means “pretty” but refuses to look directly at her:

I want to reassure him, to say it’s all right. I have learned to accept this body that betrayed me, that continues to betray me each time another part fails. I want to tell him not to worry there is more to life than being pretty, being desired. I know the thoughts of touching my deformed joints repels him, but that’s alright because I have come to love who I am, with my curves and bends in unexpected places.

I want him to know my body is not my prison, my soul soars through life free as an águila finding more love and beauty in the faces of strangers and the eyes of loved ones than he’ll every know. (iii)

Here Cronin, like Sanderson, shows the barriers that disabled people face while, at the same time, revealing the qualities—like love, desire, sexuality—that connect human beings in a more profound and deeply spiritual way. For both authors, the true disability is this lack of connection between the authors and their abled-bodied counterparts.
Fred Rogers discusses this idea in his book, The World According to Mister Rogers: Important Things to Remember. He says:

What of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.


Writing the Disabled Narrative

James Baldwin famously wrote,Not everything that is faced can be changed, but nothing can be changed until it is faced.” As these writers and authors all across the world tangle with what disability means, and as more readers face the true reality of disability, the perception of these topics will continue to change.

Anais Nin once wrote, “And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” The most important thing authors can do now is to share their own stories of how disability, whether temporary or permanent, has made a significant impact on their lives or the lives of others. For further inspiration, consider the writing prompts below.

Writing Prompts

  • Everyone has felt on the short end of the beauty/sexual attractiveness spectrum at one time or another. Write about one of your experiences. How fair is it that one’s physical appearance is the gatekeeper to deeper relationships? Has there been a time you felt this was true?
  • Regardless of whether or not you identify yourself as disabled, what do you call ugly beauty? Write about liking your body and minding the pain and limitations.
  • Write about your realities, resilience, confidence, vulnerabilities, and limitless possibilities. How do you embrace a strengths perspective, focusing on what is right, rather than on what is wrong?
  • Write about something you can’t feel or talk about—invisible disabilities like depression or anxiety.
  • What effect does disability have on your body?
  • Do you identify with having a disability or being differently abled? Write about how a congenital, developmental, physical, emotional, learning, injury, accidental, or illness-related disability has challenged you. In what ways did you reach beyond your limitations?
  • How has disability impacted your aging? Write about exploring bodily experiences or the will to survive and transcend the physical. Write a poem that expresses your life experience from the inside out, giving the reader a little window into what it is like to be you and differently able.
  • Write about the experience of starting to think or see disability in a new way.

Mairs, N. (1990). Carnal Acts: Essays. Boston: Beacon Press. pp. 81-96.

Northern, M. ( n.d.) Ten Poems to Kickstart Your Disability Lit Class. Retrieved March 13, 2014 from

Debbie spent 30 years as a registered nurse. She became a certified applied poetry facilitator and journal-writing instructor in 2007. She is currently a student in the Johns Hopkins Science-Medical Writing program. Her publications have appeared in Journal of Poetry TherapyStudies in Writing: Research on Writing Approaches in Mental HealthWomen on Poetry: Tips on Writing, Teaching and Publishing by Successful WomenStatement CLAS Journal, The Journal of the Colorado Language Arts Society, and Red Earth Review.

Debbie McCulliss
Debbie spent 30 years as a registered nurse. She became a certified applied poetry facilitator and journal-writing instructor in 2007. She is currently a student in the Johns Hopkins Science-Medical Writing program. Her publications have appeared in Journal of Poetry Therapy, Studies in Writing: Research on Writing Approaches in Mental Health, Women on Poetry: Tips on Writing, Teaching and Publishing by Successful Women, Statement CLAS Journal, The Journal of the Colorado Language Arts Society, and Red Earth Review.