Representation without Understanding – Vic Kelly

I really appreciate Vic Kelly talking about the difference between lack of representation and poor or lazy representation. As writers, research is important. It’s not enough to just decide a character is in a wheelchair without considering why, or how that affects their day-to-day life. As with so many of these essays, this post has given me a lot to think about as a writer.

Tomorrow, Morgan Dambergs will bring this whole series full circle, talking about non-binary gender and referencing the Alex Dally MacFarlane post that helped bring about this collection of guest posts.

Update, August 2022: Eight years have passed since writing this piece. Vic no longer views Jason Street (Friday Night Lights) as good representation, partially because the actor isn’t a wheelchair user, but mainly because of the leaning into the “my life is over” storyline. Vic is also no longer happy with their description of Joe Swanson as a breath of comedic fresh air. The pinnacle of disabled representation in sci-fi and fantasy is Rosie Lyons in Russell T. Davies’ Years and Years, played by Ruth Madeley, who is herself a wheelchair user and informed the character to a huge degree.

At a very basic level, wheelchair users are not an under-represented group in fiction. We’re just very misunderstood.

Take a moment and I’m sure you’ll easily come up with a dozen characters with wheelchairs: heroes and villains, lead protagonists and supporting characters. They might be from science-fiction or period drama or comedy. You might not be able to think of a character in fantasy—although they do exist—but I’m certain you can come up with a dozen.

I’m going to make a few predictions about your list. Most of the characters are white men. Over half are extremely intelligent. Most of them have vaguely defined injuries. Most of those with clearly defined injuries lost their legs rather than injuring their spine.

My final prediction is that the creative team will only have done some real research if the story is about the disability itself. Otherwise, the wheelchair is at best, descriptive color and at worst, so misunderstood that it might as well not be part of the story.

I’ve been using a wheelchair for almost 16 years, and while friends claim not to see that as one of my defining characteristics, it is. Wheelchair user goes on the list with Irish, gay, ex-pat, hearing impaired, and writer. We are the sum of our experiences and being a wheelchair user is a very different experience to not being one. I am not defined by my disability, but it is part of my daily life and it affects almost everything I do.

Becoming a wheelchair user later in life—or indeed acquiring any condition or disability that drastically changes our interactions with the world—provides a unique perspective on representation. There is a before and after. There is an acquired desire to connect to something that previously was just a plot point or some descriptive color.

In my case, I went from not really thinking about wheelchairs to seeing them everywhere—not to mention seeing the obstacles to their passage. I lost that inattentional blindness that we have about things that don’t affect us. I found myself wanting to know more about my new state, and even needing to find evidence that I hadn’t completely lost my old life, that I still had possibilities.

I gradually realized that very few of the characters I found meant something to me.

There have been some characters that work or at least come close to being good representations. Jason Street (Friday Night Lights) is one. As far as the writing went, Gail Simone’s Barbara Gordon (Birds of Prey) was another, although the art in those comics was rarely as well researched. The Open Hands Initiative’s Bashir Bari (Silver Scorpion) is a character I hope to see again as he was really well done. Finally, as absurd as his physical prowess is, Joe Swanson (Family Guy) is a breath of comedic fresh air.

Despite those few names, some fundamental issues remain. Unless the character’s sole purpose is to tell a story of emotional struggle and physiotherapy (Jason Street) or the disability makes a climactic scene more dramatic (Jake Sully in Avatar), there is a real disconnect between the reality of a wheelchair user and the fictional world.

Many of these issues are subtle but irritating. The wheelchair might not fit the character’s injury and lifestyle. Barbara Gordon has gone through a dozen heavy, thoroughly unsuitable wheelchairs thanks to poor research by artists. The chair might be an absurd contraption. Professor X’s floating metal box in the early 90s and his seated Segway in New X-Men spring to mind. Undefined spinal injuries often lead to inconsistent portrayals of what the character can physically do. Yes, quadriplegics can play sports like wheelchair rugby and go bobsledding, but that doesn’t mean they have full upper body control.

It could be argued that I’m nit-picking but if these characters were supposed to represent people like me, then they failed on some level. The research wasn’t done—or wasn’t complete—and the effect alienated me rather than making me feel understood or included. Some characters fail completely. Professor X, probably the most famous wheelchair-using character, has no traits that show him to have a disability except the wheelchair itself. Even his injury is vague. He’s a better representative for premature alopecia than for spinal cord injury.

The worst insult for me is the sudden cure. The cure negates the character as a representation. Most male comic book characters get cured: they’re cloned into a new body (Professor X); they have costumes that grow new legs for them (Flash Thompson in Venom; Soldier Zero); they get prosthetics that are indistinguishable in function from the real thing (Flash Thompson in Superior Spider-man); or they turn out to have been faking (I won’t spoil that one). Female characters get retconned out of existence (Wendy Harris from Batgirl) or retconned back to health (Barbara Gordon).

That last one particularly stung. While the art had often let the character down, it merely downgraded her from a great representative character to a good one. Gail Simone did some great work, showing in subtle ways that while Barbara Gordon had built a fulfilling life, she faced and overcame daily challenges. Those ranged from keeping her father from worrying about her to being immobilized—but far from helpless—when she was captured and had her wheelchair taken away. She was great. And then she was gone and we were back to pseudo-representatives like Flash Thompson.

Representation is important. When you’re a kid, it’s about having a positive role model with your defining characteristics. When you’re an adult, it’s about being reminded that you fit in somewhere and escaping into that character. And when you’re going through a major life change, it’s about finding solace in stories that show you that someone understands and that maybe you can overcome the challenges you face.

And that’s why representation without understanding hurts as much as not being represented at all.

Vic Kelly (pronouns: they/them) is a nonbinary, white settled Irish, hard-of-hearing, wheelchair-using, panromantic writer and scientist with OCD and cPTSD. They live with their spouse and a bunch of animals in rural Ireland. Vic divides their time between writing fiction, doing scientific communications work, and engaging in LGBTQIA+, disability and mental health activism. They can be found on TikTok, Instagram and Twitter as vic_or_vikki and on the Partner and Ally blog.