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A Better Way to Measure Disability Representation

Like many people with disabilities, as I get older, I function more and more on “Crip Time.” In other words, milestones for us occur differently than they do for our nondisabled peers. A major milestone for me occurred this past summer, when I joined a group of friends during the Disability Unite Festival at Sheep Meadow in Central Park in New York. It was amazingly liberating to see a field of disabled bodies hanging out with each other and creating community. On that beautiful July day, I had a chance conversation with the disability scholar and activist Lawrence Carter-Long.

The two of us enjoyed a very nerdy conversation, bonding over movies like The Best Years of Our Lives, a late 1940s classic that was the first film to feature an Oscar-winning performance by a disabled actor, Harold Russell. A chance remark in that conversation got me thinking. Carter-Long said that many people with disabilities accidentally become media scholars. This makes sense because there is so little disability representation. Even though the media landscape is changing with the advent of TV shows like Speechless, Special, and Queer as Folk (2022), many people with disabilities cannot help but dissect and discuss what little there is.

I was reminded of this when Martyna Majok’s play Cost of Living made its Broadway debut in fall 2022. The play, which won the Pulitzer Prize, has a small ensemble of four characters, two of whom have disabilities. And Majok has specifically mandated that these disabled characters, John and Ani, be played by disabled actors.

I may not like math, but that is half the cast! This was enough to make me go see Majok’s play several times. A play about people with disabilities that specifically casts disabled actors on Broadway? What could be better? Or at least that is what I thought initially. Yes, having Cost of Living on Broadway is a big step forward — but the strides it seems to make for disability representation aren’t as heroic once you scratch the surface.

Disability Is More Than Caregiving

So, what’s wrong? It is a finely crafted play that features two disabled actors in leading roles. But it still feeds into disability tropes. Additionally, it is not actually a play about disability. It is a play about caregivers and the relationships between those who give and those who receive care. This is an important topic. And although it can feature the disabled experience, it is distinct from that. As a play about caregivers, Cost of Living still makes important strides for disability representation. There is an onstage shower scene, where John, a wheelchair user with cerebral palsy, is given a shower by his caregiver, Jess. This is revolutionary for the fact that you see the physical exertion and intimacy that bathing someone with a disability requires. But the play does not explore anything beyond the physical in these moments. The preponderance of these limited portrayals of disability got me thinking about the Bechdel Test, which measures the representation of women in film and fiction. By asking whether a film features at least two women talking to each other about something other than a man, it attempts to quantify the depth of the female characters and their roles in the story. We need a Bechdel Test for disability. I suggest we ask: Is there more than one disabled character? Do they talk to each other? Does a disabled character’s arc involve more than just complaining about being disabled? Or is it all just gratuitous disability porn? In Cost of Living, Jess walks out on John. We never see John again nor do we know what happens to him, but we still see Jess afterwards. Ani is a quadriplegic and is Eddie’s ex-wife, who dies. Thankfully, her death occurs off stage — denying her a “death scene” like in the movie The Elephant Man. Ani’s death makes Eddie somehow more vulnerable and more open to an eventual relationship with Jess in the play’s final scene. Disabled characters are neither in the first nor final scenes of the play. Dramaturgically, the best-written plays make as much sense when read backwards as they do forwards. An opening scene needs to set things up and the closing needs to bring about catharsis. There is a missed opportunity in Cost of Living to have Ani meet John. They both have different perspectives because they are in different stages of their lives and have different relationships to their disabilities. John has been disabled since birth, but he is young enough that Jess is the first caregiver he has independently hired. By contrast, Ani is much older. She became disabled through an accident, and her caregiver is her ex-husband with whom she shares significant history. Unfortunately, the fact remains that the disabled characters primarily function to further the development of their nondisabled caregivers. In fact, all that is necessary to reach the play’s conclusion is for Jess and Eddie to endure any hardship resulting in their emotional growth, which ends in their meeting each other at the exact moment that they are ready for a deeper relationship. In this way, John and Ani are superfluous. They are necessary for their caregivers’ development, not their own.

Toward a Deeper Depiction of Disability

By contrast, disability plays shift the focus away from caregivers and instead put the disability front and center, showing what it is like to live with one. A recent example is You Will Get Sick, a Broadway play by Noah Diaz, starring Linda Lavin. The play is about the process of acquiring a disability. Diaz’s choice to not name his play’s characters conveys that they could be anyone, and anyone can become disabled at any time. In You Will Get Sick, characters exhibit strange symptoms — like coughing up hay — that belong to a mysterious, unknown illness. This is particularly relatable today in a world where COVID-19 is now endemic. Even after more than three years, there is hardly even an agreed-upon list of symptoms, due to how uniquely it manifests in different people. Throughout the course of You Will Get Sick, we see the main character’s illness progress from trouble standing up in the shower, to needing a wheelchair, to being too sick to even get into the wheelchair, and ultimately to their death. However, the play portrays not just the progression of illness, but also how it affects a person’s daily life. In the beginning, for instance, the two main characters meet because the ailing one decides to pay a stranger to tell his sister about his illness, as he is too afraid to do so. This affords a great deal of humor, but it also shows that disclosing illness is hard for everyone. The two characters begin the play as strangers speaking over the telephone but end as very close friends in a caregiving relationship.

We need a Bechdel test for disability. I suggest we ask: is there more than one disabled character? Do they talk to each other? Does a disabled character’s arc involve more than just complaining about being disabled? Or is it all just gratuitous disability porn?

Alternatively, the National Theatre in London recently staged a production of All of Us, written by Francesca Martinez, a playwright with cerebral palsy. All of Us depicts disabled people in the United Kingdom dealing with health care cutbacks. However, the play is so much more than that. Not only does it show people with disabilities being politically engaged and leading productive lives, but it is also about the main character’s journey as she comes to terms with what her CP means in her adult life. At the beginning of the play, she has a great deal of internalized ableism to come to terms with. This is a major source of frustration for her friends who constantly call her out for her lack of self-advocacy. By the end of the play, not only is she more aware and vocal about her own needs, but she is also in a committed relationship. All of Us is noteworthy for how it makes clear that disability is not monolithic. It shows characters with a range of disabilities, some acquired and not all visible. But more importantly, it shows people with disabilities from varied backgrounds, with distinct personalities. In short, Martinez’s play portrays people with disabilities as fully formed, diverse humans. Across media, authentic disability representation is still a relatively new phenomenon. Even though people with disabilities have always been there, disabled characters have typically been portrayed in static situations — either as inspiring sidekicks or as characters who are martyrs to their disabilities. In the latter case, characters are often expendable, as in the case of Henrik Ibsen’s Ghosts. Or they are literally incapable of leaving the house and removing themselves from a bad situation, as in Tennessee Williams’ The Glass Menagerie. The trick is to write disabled characters who are multifaceted and can also function as members of greater society. As more playwrights explore the disability experience, a disability-focused Bechdel Test is a step toward better representation. It examines not only the quantity but the quality of their interactions with the other characters. In doing so, it ensures that they have substantial character arcs. Theater is a powerful tool that can offer spectators snapshots of the lived experience of others. Therefore, all audiences with or without disabilities deserve to see an accurate depiction of our community.

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