Where are the Wheelchairs?
My aunt’s disabilities have been a lesson to me in representation.
If somebody asked me to describe my Aunt Lou, I’d probably start with how she’s a sharp mind with a firecracker wit and a very warm heart. I’d mention how her one-liners make everybody laugh and her advice always helps you feel more solid and capable. How a reassurance from Aunt Lou makes you know everything’s going to be okay… because she’s insightful, yes, but she’s also not a bullshitter; her words of comfort are truth. I’d mention, too, that she’s one of my favorite people to riff with about philosophy and spirituality, or to go to when I’m emotional and need a balanced perspective.
…But I’d probably not even think to mention — even though I’d definitely picture—that most of these conversations about life, love, and the mysteries of the universe happen in her bedroom. Because she spends most of her days trying to rest, and she gets winded if she’s up and about for too long.
If I were writing a character sketch, I’d go deeper, also mentioning her interests, her hobbies, her talents, and her quirks. Like how she loves science fiction movies and historical docudramas. How she has a huge stash of crayons and she colors way better than I ever could. And how, even though her favorite color is green, she has this really cool pink leopard-print robe for walking around the house at night — and I always feel weirdly lucky to bump into her at 2:00am in the kitchen, because a surprise run-in with Aunt Lou is the emotional equivalent of how you feel when a butterfly lands on your shoulder or a cat rams your leg with its head.
I’d forget to mention, though, that watching movies and docudramas and coloring are what help her pass all that time in bed. And how, when I lean into memories of her walking into the kitchen late at night, I see her moving with an occasional limp — the pink leopard robe skimming just above scars that stretch in a complicated network over each knee.
I might mention that Aunt Lou curses like a sailor when she feels like it, but she prays with exactly as much zeal — and balances her religiosity with the shrewd critical thinking of a brilliant, scientific mind. But I’d forget to acknowledge that both the cursing and the prayers are often inspired by the chronic pain.
And while I might mention that she’s lived an astonishing number of medical miracles, I’d likely just say that “she has a lot of health problems.” The word “disabled” usually doesn’t even occur to me.
I mean, I guess I’d eventually mention it, if it became necessary to clarify.
But only eventually. And only perhaps.
It’s hard to write this as a non-disabled person. I’ve realized only recently how I might inadvertently “erase” my Aunt Lou’s disabilities in attempting to describe her, and I worry that this makes me “part of the problem.” Still, if I’m being 100% honest with you, with myself, with anyone, I don’t think of my Aunt Lou as “my disabled aunt.” I think of my Aunt Lou as my Aunt Lou, and even as an additional mom to me — so similar to me in many personality traits and habits that my mom often jokes that I’m her sister’s daughter. And I’ve always been honored to hear this.
In the minds of those who love her, the expansiveness of my aunt’s larger-than-life aura often seems to outshine her disabilities. We do remember them when setting up or choosing a venue for a family party: is there space for a wheelchair? can we move the car that parked Louann in so she can easily go home once she’s tired? are there enough food options that won’t upset her stomach? and make sure nobody lights the candles too close to her oxygen!
These concerns are reflexes, not inconveniences, for us. But when describing our Aunt Lou to others, we’re far more likely to zero in on her fierce intelligence, her sporty aesthetic, or her love of basketball.
Basketball has been one of the defining loves of her life. (The other, and far greater, is her love for my uncle, which we’ll get to momentarily.) Once an extraordinary athlete, my aunt’s love of basketball ultimately sent her down a very difficult path. She sustained injuries that required surgery, and the experimental nature of some of the surgeries triggered a host of serious and debilitating autoimmune problems. Hence, my Aunt Lou has had disabilities of various kinds for as long as I can remember. I recall first seeing a pair of crutches because she was using them after one of her many knee surgeries when I was a toddler. Then there were all the surgeries thereafter, when various organ systems began to suffer. I have memories of seeing surgical scars all over her legs and abdomen when I was still very small, studying these tirelessly, and thinking they were so cool. I vaguely even recall singing a song about them — and in hindsight, I can only hope that incorporating her scars into a silly song didn’t hurt her feelings.
As I got older, there were eventually insulin shots and oxygen tubing and tanks, too, when her body struggled to metabolize glucose properly and her lungs began throwing clots. Yet although my aunt’s disabilities are a huge influence in the rhythms and geography of her world, disability is not “who she is.” It may be a significant aspect of the loom that holds the tapestry of her life… but the tapestry — and its weaver — are no less magnificent or vibrant.
A few weeks ago, I wrote the love story of my Aunt Lou and Uncle Ron on Medium. While I wrote, I was thinking about how extraordinary their story was on so many accounts. Like how amazing it is that my uncle somehow knew she was The One back in high school, well before he even met her. Amazing that life kept finding so many ways to connect and reconnect the two over the years. Amazing how my aunt got so far as to become engaged to another man after my uncle had fallen deeply in love with her — and that my uncle was still sure, when this happened, that she was the only one for him.
I think, especially, how amazingly beautiful it is that my uncle accepted her with open arms when she chose to give him another chance years later.
In my mind, the fact that he knowingly proposed to a woman with serious disabilities and health problems — problems that could have stood to shorten her life by many decades — is an afterthought. Yet most of the time, society doesn’t envision a young man’s ideal partner as someone who’s in and out of hospitals, struggles to walk, carries oxygen, and wears a lace of scars.
But why not? Why don’t we?
So I ultimately chose to mention her disabilities in the narrative too. And even though this split the focus of the piece — from “just a love story” to “also a disability love story” — it was the right choice. My Aunt Lou’s disabilities have been an important part of her story. No one’s disabilities should be rendered invisible for narrative convenience.
In any case, disability or not, their tale is also refreshing because it doesn’t follow the sexist tropes we’re all tired of. There was no “man doggedly pursues uninterested woman and laments that ‘nice guys’ don’t get the girl” bullshit; my uncle wholly accepted and respected her choice to stop seeing him in the ’80s, and he never pestered her. And it wasn’t a stereotypical story, either, of a woman too stupid to notice that the Nice Guy she doesn’t want is The Man for Her, while she pursues other guys for ostensibly shallow reasons; my aunt did love my uncle, but she misread his character early on, and her decision to get some distance for a while was about honoring her own sense.
Nevertheless, someone reacted privately to their story: “Their love story could be a movie.” Yes. It could. However, unfortunately, our culture still seems much fonder of movies featuring disability where either:
- people who are disabled or ill — and find love — play out their lines within a narrative of inevitable doom… or
- people who are disabled triumph over something or other and then go on to live happily-ever-alone.
In other words, disability becomes just a plot device for dramatic effect (…and profit). For some reason, we’re not so keen on telling stories where disabled people get to be adored by their partners and go on to live normal lives, are we? (Normal within the constraints of their own personally possible happily-ever-after, of course.) Like where we can presume that a (disabled) protagonist does marry the handsome athlete she first saw back in high school, and that they can have a perfectly ordinary happily-ever-after: going for rides together for ice cream on hot summer days, or doing yard work side-by-side, or bringing crab-and-cheese dip to their in-laws’ on Christmas Eve, or nostalgically visiting their old campus, or playing honorary parents to all the nieces and nephews who adore them.
Basically, we have a dearth of stories about disabled and ill people living mundane, real-world stuff. It’s almost like our entertainment media is mostly interested in doomed disability/illness romances, or biopics about disabled/ill people who later become champion athletes and public speakers. But where’s disability representation in other genres? Why is it only present in drama, where the point is either tear-jerking sorrow or tear-jerking inspiration?
When I was looking for a cover image for my recent story about my aunt and uncle, I was in for an upsetting awakening: there aren’t many stock photos (as in, I found zero) of happy young or middle-aged adults with mobility aids (e.g., wheelchairs, canes) or supplemental oxygen, who were engaged in fun activities. (You know, like dates.) Except for a bunch of photos of wheelchair sports and maybe a single photo of what might’ve been meant to represent a young-ish lesbian couple. And that was cute — but my aunt and uncle aren’t a lesbian couple.
Aside from these ladies, I found only photos of older adults — and in a particularly depressing discovery, one of these rare wheelchair pics featured the couple staring into the sunset. As though, when you’re in a wheelchair, that’s all there is left to do. Jesus H. Christ, wheelchair does not equal death! Wheelchairs get you places, and many of those places are fun. Younger people sometimes need mobility aids—or oxygen tanks—too. It happens. And many of them are also loved and desired (because they are lovable and desirable). They go on dates, and do fun stuff, and think about futures. Not just sunsets.
Ironically, many photos tagged “wheelchair” featured bicycles. Come on!
Moreover, when I tried searching “disability,” largely what that turned up was people with Down’s syndrome. Cool, but, um, not every person with a disability is cognitively or developmentally impaired.
Where were the people who could photographically represent somebody vibrant and physically disabled like my Aunt Lou?
In the end, since I couldn’t choose a photo of someone with a disability, I settled on one of a young female basketball player full of vigor on the court. Relevant, sure — but precisely the opposite of what I was hoping to find.
I was down about this for a number of days. I’m almost ashamed to say that I’d never even noticed the dearth of such representation before — not until I had to search for stock photos and came up against their glaring absence.
I stewed over this during long walks around town, or in quiet moments on the train. (Yes, I know I’m fortunate to be able to take long walks to muse about all of this.) I contemplated it, too, when I passed shops at the mall or surfed the web. And I kept wondering, Why can’t we see more models with physical disabilities wearing these clothes? Or Why can’t these websites and advertisements show happy families on vacation, or happy couples on dates, wherein a model also happens to be using a wheelchair or an oxygen tank?
I recognize there is a huge amount of privilege in my being a brown-haired, brown-eyed, white woman with a curvy-average build and legs and lungs that can take me just about anywhere on land I want to go. I can see people that look like me (somewhat) in advertisements in most Western/Northern countries.
But even though I can see “myself” in ads, it still saddened me that — for the first time I realized — I couldn’t see my Aunt Lou.
Representation matters because if we truly want to see each other more deeply, we have to see each other more often. And to do this, we have to make a point of such seeing.
(By the way: the very idea of “visibility” in disability representation strikes me right now as an ironically ableist choice of words *Sigh.*.)
Why didn’t I give much thought previously to the fact that people like my Aunt Lou were missing from advertising, TV, and film? For as long as I can remember, disability was rarely represented in a positive, vibrant, matter-of-fact way. I suppose those media skews were something I’d taken for granted as “just the way things are” — even if I did notice and feel bothered by a lack of other forms of diversity. (Then again, there’s way more dialogue surrounding other types of representation than disability representation; the latter might be easier to overlook because far fewer people are bothering to talk about it.)
Similarly, for as long as I can remember, my Aunt Lou’s disabilities were also “just the way things are.”
Maybe to some extent we all filter out what we observe as a constant. Like how my brain stops registering the unread messages in my inbox because I see them so many times a day. Or how I find it in some ways harder to describe my own hometown than cities like Shanghai or Berlin; I’ve lived in the latter places for far less time, so their details stand out for their “novelty.”
Maybe that’s a huge part of it; when you love someone with disabilities, the “with disabilities” part is an afterthought in your description. And that may not be a failure on your part; it’s good to focus primarily on others’ humanity. Still, it’s problematic to overlook some defining aspect of another person’s experience. This is why “colorblindness” sounds like a nice sentiment on the surface, but it’s a huge let-down and disservice in practice. When we screen out differences in our minds, we miss the chance to appreciate a fuller spectrum of human experience and perspective — and we miss the chance to make the world better for the people whose differences we’re failing (or purposely neglecting) to see.
Yet even though the world is increasingly woke to the fact that being colorblind is unhelpful, and is eagerly dialoguing about equality with respect to race, ethnicity, religion, orientation, gender, and class… I wholly admit that I’ve been “wheelchair / cane / crutch /oxygen-tank”-blind as a consumer of media. Until just a few weeks ago.
Diversity in representation is not a statement or an ideal: it’s a reality. And disability/injury is a form of diversity that spans ALL other forms: gender, race, orientation, and age. Agents, casting directors, and photographers can do a huge part in changing things. Writers, too: why not include references to disability more often in our work? For instance, I write memoir, so if a scene calls for an appearance from Aunt Lou, I should be sure to allude to her occasional limp, her oxygen tank, or her wheelchair, or how she prefers booths over tables in a restaurant because she can stretch out her sore legs.
As for my previous obliviousness to all the missing “Aunt Lou”s in the media, I could say, Fine, Laura, you don’t consciously “see” Aunt Lou as someone who uses these items; you just see “Aunt Lou.”
But how must Aunt Lou have felt all these years about never seeing her own reality depicted — crutch, cane, wheelchair, oxygen and all — in a sitcom, or a happy film, or an ad for something fun?
The question makes my heart sink.
A few days ago, at a subway station here in Berlin, I saw a bikini ad and admired the model’s midriff. Suddenly I noticed she had a large surgical scar on her abdomen. I actually stopped in my tracks and smiled. A scar is not the same as a “disability” — but it reminded me of my Aunt Lou and her own surgical scars. I praised this ad in a short post on Facebook for my friends:
“Life is messy; sometimes there are scars. That’s totally normal — even though we never see it. Your beauty is legitimate. Own it. Shine it. The world is ready.”
I also snapped a photo of the ad and sent it to Aunt Lou from across the ocean too. See, there is another visibility issue she’s encountered recently: she is also a survivor of breast cancer, and when browsing swimsuits online last summer — on websites for post-mastectomy apparel — she lamented, “How are you supposed to know what these will look like on you after a mastectomy? Every single one of these models has two breasts.”
Not the same kind of surgery, granted, but I thought she’d find a surgical scar in a bikini ad encouraging:
“Look! I found a model today with a large abdominal scar! This makes me so happy. The world is catching up with respect to what beauty looks like. Tell Uncle Ron you’re going to move into a new career in swimsuit modeling.”
And Aunt Lou’s reply:
“Just saw your pic! Never seen a model with any scars! Must be German, we Americans are too vain, lol. Thanks for thinking I could model swimsuits, lol. Love you.”
Maybe we’re vain. Maybe we’re oblivious. Maybe we’re something else. I don’t know. But whatever we are, it’s time to change that.