Clare Mulcahy is a professor of English living in Alberta, Canada with her beloved partner. This essay explores the intersection of her identities as a queer woman who will soon develop a debilitating chronic disease, and her evolving relationship to pop culture representations of queerness and disability.

When Representation Hurts

For someone who grew up with parents with debilitating, chronic illnesses, I watch a lot of medical dramas. The depictions of constant pain, the frail, beaten down bodies should remind me of memories too traumatic to touch – and they do – but they also remind me of my mother. Years after her death, I return again and again to ER, the classic 90s medical drama that I started watching with her when I was a teenager, the knowledge of her illness still ahead of us. Now, as an adult, the urge to rewatch sneaks up on me, and I drag out my old ER DVD box set and wipe a film of dust off the unused DVD player, rubbing the grey grime onto the soft blue of my pantleg. On the days when I can feel my mother’s death, when I can’t escape how absolutely gone she is from this world, ER makes it easier to listen to the parts of her that still live and hum beneath my skin. I insert the DVD into the player with a whirring noise, a mundane moment that for me is almost ritualistic; maybe if I do the magic right, I’ll be able to conjure my mother to be here with me.

But watching ER or similar medical dramas always carries with it some inherent risks. Inevitably, there are episodes on Huntington’s disease (HD), a degenerative, genetic disease that particularly impacts cognitive and motor function and that eventually took my mother’s life. Rewatching ER is both like pressing against the wound of my mother and like experiencing her deep capacity for joy. I can picture her sitting on the pink couch in the basement with her knees under her chin, totally engaged by the TV, the same attitude and posture I often adopt. I feel closer to her. But I also feel closer to her disease.

Since my youth, I have been living proof of the almost axiomatic statement that “representation in pop culture matters.” When I was a closeted teenager growing into my queer sexuality, TV shows and movies affirmed for me that queer love and relationships were possible, providing me a lifeline. But the same media that helped guide me through my exploration of my sexuality could also betray me when it sensationalized chronic illness and disability. It’s not that I want pop culture to ignore illnesses like Huntington’s disease. We live in a world that often seeks to eradicate disabled and chronically ill people, and characters who have Huntington’s disease affirm that they are still here. But my penchant for watching medical dramas has meant being exposed to depictions of HD that exploit for entertainment my mother’s disease and what will become my disease. And I am left grappling with whether other audience members witnessed the most painful aspects of Huntington’s disease the same casual way I’ve consumed countless medical narratives. The same way I rewatch ER – sitting on my grey couch, the warm, purring weight of a cat on my lap, only half attentive as someone’s medical trauma plays in the background.

When I was a teenager, I thought my darkest secret was that I was queer, and had no idea that there was something bigger that would spin my life out of control: my genetics. I would eventually conclude I was pansexual, but as a teenager I swung wildly between being certain I was gay and being equally certain that I was somehow imagining my queerness. After all, how could I be truly queer if I was still attracted to men and had never dated a woman? I wanted something that would quiet those doubts, a queer origin I could point to and say that I had always been this way. I didn’t do any of the stereotypically gay activities as a child; I was terrible at sports. The one summer I played softball, I spent practices swinging wildly, my anxiety growing with my awareness of my teammates leaning against a wooden fence in the waning sunlight, impatient for me to connect the bat to the ball.  Despite these failures to be a tomboy, there were pieces of evidence of my queerness I returned to repeatedly. At age ten, playfully holding hands with a friend and telling her a woman in a magazine ad was cute, and only realizing I’d said something she considered strange when she dropped my hand abruptly. As a teenager, I had my first real kiss during a game of Truth or Dare with a female friend. In a secluded section of a park, I leaned in to kiss her, momentarily forgetting myself in wonder and desire. She backed off and laughed nervously, saying, “You’re gonna be a good kisser,” before returning to her boyfriend. Afterward, desperately trying to “accidentally” find myself in situations in which I could kiss other girls, even as I was convinced that they didn’t feel what I felt.

As I was grappling with my sexuality, my mother was struggling with equally life-changing developments, though the truth of the situation remained for some time secret even to her. My mother wasn’t diagnosed with Huntington’s disease until I was 18, but for years before that she had developed mysterious symptoms that became more obvious, a noise rising to a pitch that I couldn’t ignore. Instead of her strong, capable body that had been a comforting presence in my young life – one of my earliest memories was watching my mother in a room full of red-faced women doing aerobics routines – she had hands that twitched involuntarily and feet that tipped her forward before she seemed ready to walk. Her memory too became unreliable. As children, my siblings and I used to complain about how exacting her memory was, like when my sister begged her for an advance on her allowance and our mother reminded her that she’d already been given one. Now, I was left navigating the gaps in my mother’s memory, constantly worried about tripping her up with words she couldn’t find or conversations she couldn’t finish.

My mother turned that same obsessive energy that could be entirely absorbed in pop culture like ER toward trying potential solutions for her condition. Maybe it was the mercury in her fillings, which she had removed, or maybe drinking filtered water would help. For months, she resisted consulting a doctor directly about these growing symptoms. When my siblings and I could gather the courage to ask her why, she’d say brightly, “well, I could get hit by a bus tomorrow!”, demonstrating her characteristic stubbornness, pragmatism, and positivity in the face of tragedy. I would catch my sister’s eyes after one of these declarations - as she and I stood in our kitchen, the smell of my mother’s baking bread filling the room - and would try to wordlessly tell her all the fear and confusion I was feeling. Unbeknownst to me at the time, my mother was telling my father that she was afraid she had a brain tumour; some part of her had decided that this was true and that there was nothing to be done about it. He was barely keeping sane through his own cancer diagnosis and changing my mother’s mind had never been easy under even the best of circumstances.

When I focused on it, my mother’s condition became almost unbearably sad. She had been such a steady force in my life, and suddenly she was the one hurting and I couldn’t do a thing to change that, a fact that was so frightening that I couldn’t look at it for long. At times, it was easier to relegate my mother’s illness to the back of my mind and instead focus my obsessive nature – which I’d inherited from her – on my sexuality.

As my mother searched for the source of her symptoms, I sought to understand my queerness by turning to pop culture, looking for models for queer life that I sorely lacked in my small conservative town. Sapphic sex was both a deeply fascinating and anxiety-inducing topic for me. I had an irrational fear that I couldn’t pursue women unless I understood what queer sex constituted, like without that knowledge the bouncers at the queer club would tell me, “Get out of here!”, crossing their arms across their chests and displaying their bulging biceps.  But in the media, I consumed sapphic sex or even physical affection was rarely depicted in any detail. Even the queer relationships I adored in pop culture were far more chastely depicted than their straight counterparts. One of my favourite shows as a teenager, Buffy the Vampire Slayer, an American supernatural TV show, depicted the straight sex scenes in loving and often erotic detail, whereas the climactic scene in which two women solidify their romance didn’t even include a kiss. A main character, Willow, realizes she’s attracted to women and to one woman in particular, Tara. Tension has been building between them, and the episode closes with them in a bedroom after a difficult day. Willow deliberately closes the door and blows out a candle, leaving her alone in the dark with Tara, and then the episode cuts to black. Though they remained in a relationship, the two women wouldn’t officially kiss on screen until nearly twenty episodes later. For me, these scraps of romance felt like wondrous, necessary glimpses into a queer world, and yet they were never enough.    

I took to searching out queer pop culture on my own, where I didn’t need to hide my responses. New to online shopping, I ordered a DVD of When Night is Falling, an indie Canadian movie about a lesbian romance, and hid the package when it arrived before my parents could get a closer look. In my downstairs bedroom, I lay on the lumpy mattress and inserted the DVD into my laptop, the bright lights of the screen reaching out into the dark of the room. The old laptop struggled, the heat of the base pressing against my thighs and the internal fan kicking up into a noisy higher gear, all of which I ignored as I hit play. I waited impatiently for the plot line about the love interest working at a circus to pass and to see the sex that had been promised in the reviews. There was distracting indie cinematography, shots of the circus during sex scenes that probably was a metaphor for something I couldn’t grasp, but I didn’t care. The movie fed the hunger I’d had for representations of loving, sexual queer relationships that were comparable to the countless narratives of heterosexual romance I’d seen in media. 

Though I didn’t know it, the other most important secret in my life was also being depicted in the pop culture I consumed. Years before my mother’s diagnosis, I had already seen depictions of Huntington’s disease with my mother in our beloved TV show ER, though we had been ignorant of its darker implications for our family. The American medical drama ran for 15 seasons, and my mother and I were dedicated viewers in its early days, when it boasted the likes of George Clooney and developed storylines that became famous (within certain TV-watching circles), like the tragic death of Mark Green.

Our ER era was a complicated period in my relationship with my mother. I was a teenager and felt a push toward independence, like the night when I refused to cuddle with her in front of the TV, having some stubborn sense that I was too old for it. My sister quickly retorted, “I’ll cuddle with you, Mum,” and I stared ahead at the bright lights of the TV, not wanting to see whether I’d hurt my mother’s feelings. Along with all the typical teenage secrets I was keeping from my mother – drinking and getting into minor trouble – I also kept from her the parts of me that felt harder to love. I had grown up in the warmth of the knowledge that I would forever be precious to my mother as the youngest of her children, her baby – never mind that I was now taller than her. But as my queer desire grew, so did the anxiety about what kind of person I was becoming. I would go to sleepovers and female friends would change in front of me with the confidence born of the assumption that there was no sexual charge to the act. I would look and look away, at once thrilled by the sight of their bared skin and feeling lecherous, like I was no better than the straight men who stared at me with a sense of ownership. Even though I knew on some level that I was able to explore my sexuality – if only in my mind – because of my mother’s support for me, I still didn’t want her to see things I could barely understand.

For me, ER became a safe place to spend time in my mother’s love. No matter how far I sometimes felt from being the innocent baby of the family, I still had the comfort and familiarity of a shared routine. Every Thursday I would sit with my mother on the pink couch in my parents’ basement, the nearby wood fireplace crackling and glowing warmth, and turn on ER. The show was structured around the professional and personal struggles of a main cast of nurses and doctors, but each episode also featured patients who visited the emergency room of the hospital. ER combined long-term character development with the novelty of new patients, who often added sorrow, surprise, and even humour to the episodes in which they were featured.

Though I didn’t realize its significance at the time, ER twice used Huntington’s disease as a kind of “worst of the worst” diagnosis. In one episode a mother whose son has Huntington’s disease disconnects his ventilator so he can die with dignity, and in another a character learns he has Huntington’s disease and wonders if his father who died by suicide might have had it too. Though my mother and I wouldn’t have known it when we watched the episode, this latter plot point eerily echoed her own family history. Huntington’s disease is typically passed on by one parent, and after my mother had been diagnosed my family speculated that she had likely inherited it from her own mother. My mother’s parents both died by suicide before I was born, but my grandfather had lived long enough that he should have become symptomatic. My grandmother, on the other hand, had killed herself at the exact same age when she likely would have developed symptoms, giving an unsettling new insight into why she might have killed herself, a mystery that my mother had never fully unraveled.

When I was a child, I felt a kind of abstract sadness about my dead grandparents that many children feel about events they’ve been told about but didn’t experience. But my grandmother’s pain felt newly raw and real to me after our family concluded that she must have had Huntington’s disease. I imagined my grandmother suffering the same confusion and overwhelming worry that overtook my mother when her condition developed, compounded with a loneliness that hurt for me to think of. At the time, my grandmother’s daughters had left home, her husband travelled for work, and she was an English war bride, far from her own family or nation. I wished for my grandmother at least the knowledge of what was happening to her, some cold comfort, and I was haunted by the fact that she would never know.

When I look back with the knowledge I have now on these ER episodes that featured Huntington’s disease, it feels brutal to have a beloved TV show play out one of your darkest family secrets in a single episode. The brevity with which these episodes touch on Huntington’s disease - the physical and mental deterioration and the complex family trauma involved – takes my breath away. But I also can’t blame ER for moving past Huntington’s disease so quickly, because my mother and I were part of the audience that looked forward to new episodes featuring terrible illnesses. The ER episodes depicting Huntington’s disease aired before my mother was diagnosed, and when she and I watched these episodes together they wouldn’t have stood out as anything more than another tragic medical story happening in the background of the characters we really cared about. I might have cried over these fictional people who shared my family’s disease, a fact that I had yet to learn. But I would likely have forgotten them as I moved back to wondering if my favourite “will they or won’t they” characters were ever going to get together romantically.

The realities of Huntington’s disease came crashing down on me when my mother finally received her diagnosis. I had graduated high school and was attending a French-language program in Quebec City. It was my first time living away from my family, and I was flirting wildly with people of all genders. The first woman I’d had sex with came to visit and I tried to impress her by adopting signifiers of queerness that I’d gathered from pop culture, like smoking cigars. Feeling both empowered and homesick, I made my regular phone to my family. On a communal phone in the quiet basement of the dorm, I called my family for comfort and instead learned of my mother’s diagnosis; she had Huntington’s disease, not a brain tumour, not mercury poisoning from her fillings, and not any of the other frightening possibilities she had tried to identify and address over the months.

The whole world shrunk to the plastic, yellow phone in my hand, the sound of my mother’s calm, kind voice that was trying to stop this from being scary for me, but my heart was racing – this was genetic. This could be in me too. All that time that I’d been looking for my queer origins in my childhood body and self, and I should have been looking for something else, for whether my mother’s disease was in me and had been since birth.

In the aftermath of the phone call with my mother, I had ringing in my head the conversations I would often have with my sister, who was obsessed with tracking our family genetics. Caitlin would tell me, “I mean obviously you got your green eyes from Dad’s side of the family, but you also totally look like Mum here.” My sister held up a black and white picture of our mother as an adolescent, curled up in a chair that is too big for her. She’s deep in a book, too engrossed to notice the picture being taken. I can’t help but give a gasp of recognition; it’s me as my mother and my mother as me. Same short, dark, curly hair, same thick, unfashionable glasses, and the same skinny body that took too long to go through puberty. After my mother’s diagnosis, those genetic delights of belonging to other people – being of their bodies - made for a more complex understanding of inheritance.

By the time I next encountered Huntington’s disease in pop culture, I had a much deeper knowledge of its terrible realities. In 2007, I was watching the wildly popular show House, which focuses on Dr. Gregory House, a jerk who is brilliant at cracking medical mysteries. My time with ER had primed me to be invested in House and its slow-burn romances, and one of them was between two doctors on House’s team, Eric Foreman and the new character Remy “Thirteen” Hadley. In their early encounters, it is revealed that Thirteen’s mother died from Huntington’s disease and that she is debating whether to be tested for it. Major arcs for the character involve her own diagnosis with Huntington’s disease and her brother’s.  

When watching House, I could see the strange parallels between myself and Thirteen. Like me, Thirteen was a pale, brunette, bisexual woman whose mother had been debilitated by Huntington’s disease and who had to determine whether she wanted a test that could fundamentally alter her sense of self. It was possible that my mother had passed down Huntington’s disease to any of her four children, and we could choose to be tested to see if we were gene positive, meaning we would likely develop symptoms at the same age our mother did. I had quickly moved past the debate phase that made for such drama-filled TV on House and went forward with testing. It felt like bravado, like I was playing chicken with this disease and I’d be damned if I was going to look away first. I had been through enough for my young life and I felt tough enough to take whatever came next.

That feeling lingered even when I was diagnosed as gene positive for Huntington’s disease. Driving home from the doctor’s appointment, the smell of McDonald’s French fries in the air and the cold condensation dripping down the side of my fountain pop onto my fingers, I felt momentarily special and strong. I resolved that when I eventually got sick I would be like those characters on ER who inspire the staff with their bravery and resilience, and whose stories used to make my mother and I cry as we reached for the nearby Kleenex.

My certainty about the kind of narrative I was in fell away as the real world returned. My mother’s disease wasn’t over in an episode, or even a multi-episode arc, as on our beloved ER, and instead it advanced on her in nonlinear ways, slowly but surely. New, frightening symptoms developed, though I tried my best to radiate love and not fear in her presence. I still had so many lucky moments of affection, humour and fun with my mother, but the bad days were becoming worse. On one such day, she took me and my sister Caitlin on a shopping trip to a nearby city. As a child my parents were often anxious about money, but as some of those financial concerns eased, the family joked that the “bank of Mum” was open more often. Even so, it was rare for just the three of us to travel to the city, and she clearly wanted to give her two youngest children an adventure and an escape from family trauma. While my mother was walking from one store to another she had a bad fall, tripping seemingly over nothing. A healthcare worker who happened to be nearby tended to her angry red cuts, and my mother burst into tears. She didn’t cry often in front of us – other than when watching the kind of tearjerker pop culture she loved - but she broke down at how this disease had taken this sunny day from her and her kids. It broke something in me, too, to see how exhausted and distraught she was, because of Huntington’s disease and because of her inability to protect her kids from the ways it was changing her. And I couldn’t help but see her sorrow at her body betraying her as representative of what my future might hold.

I was being repeatedly shown the realities of Huntington’s disease, and it made fictional depictions like those in House both affirming and enraging. House was structured around complex medical issues that only Dr. House could fully understand, and viewers were invited to speculate on and analyze his latest cases. Thirteen’s Huntington’s disease functioned as a long-term mystery to engage both House and the viewers, and the show depicted Thirteen in increasingly sensational ways to maintain that engagement. Following Thirteen’s diagnosis, she begins partying too much and having one-night stands with women, which is positioned as part of her self-destructive behaviour, and she “recovers” with a long-term heterosexual romance with her colleague Eric Foreman. Thirteen’s storyline eventually culminates in her being imprisoned for helping her brother die to escape the severity of his Huntington’s disease, and Dr. House’s brilliance is once again established when he deduces why the secretive Thirteen wound up in prison. House was like looking at a fun-house mirror that distorted my queer identity into something sordid and used a disease overtaking my mother to create more drama and trauma for the show. 

But on some level, I also felt grateful for any depictions of people with Huntington’s disease. In my young adulthood, I often felt radically different from my peers; I shared with them typical behaviour like attending university, but the sense that Huntington’s disease was slowly stalking me was also deeply alienating. I barely knew how to trust my friends to support me through my parents’ illnesses, let alone confessing to them the tangled, dark feelings surrounding my own diagnosis as gene-positive for Huntington’s disease. Amidst this loneliness, there was some strange comfort in having Thirteen’s story parallel my own. As exploitative as House was, watching it felt like being with someone who understood Huntington’s disease and its horrors, and the way those horrors snake through families.

As an adult looking back, I can see House with a more critical lens and the ways it contributed to what disability rights activist Stella Young (2014) called “inspiration porn.” Young (2014) criticized narratives in which people are defined by their disabilities, which are treated solely as burdens, and their hardships serve to comfort able-bodied people. House himself is disabled, but one of his defining characteristics is his cynicism and cruelty, including to the many disabled and chronically ill characters that appear on the show. House is almost always right in his ability to crack medical mysteries, and so his tendency to belittle patients and override their objections or autonomy is presented as “for their own good.” Despite featuring a lead disabled character, disability and chronic illness are often seen as a problem to be solved on House. House’s own disability is also exploited for dramatic storylines as his pain becomes debilitating and he manages by self-medicating. His trauma allows able-bodied viewers to revel in their own functioning bodies, though he at least is granted the status of a main character.

In many other forms of pop culture that circulated in my young adulthood, disabled or chronically ill characters only appeared fleetingly. One such example was in Glee, the American TV show about teenagers – and later adults – who sing. One episode featured Rachel, a main character, who is temporarily losing her voice and is taken to visit a quadriplegic man, Sean, whose story motivates her and helps her recover. Though the show provided some authenticity by casting a disabled actor, it also clearly falls into inspiration porn; Sean serves his narrative purpose for Rachel and is never heard from again. I watched the episode in my grad student apartment, with its second-hand furniture and cheap plastic glasses. I scoffed “Jeeeesus Christ” at how quickly the camera panned away from Sean and to Rachel singing triumphantly in a later scene, with the implication that Sean is no longer needed because her voice has been reclaimed.

The same pop culture that had provided such important glimpses into queer life often showed me stories of chronic illness and disability that were flawed at best. They fed into my fear that when I developed Huntington’s disease I would be solely defined by my trauma, or, even worse, relegated to being a side character in my own life. I needed to find ways to affirm that my mother’s disabling disease, which would eventually be my own, didn’t make her any less of a full human. There’s a reason Huntington’s disease is shown on medical dramas as the “worst of the worst” diagnosis; it is a horrific thing, a nightmare clawing at my mother. But, the older I grew, the more I was able to see the parts of my mother that shone through even the darkest moments: her love of music and movies, her affection for babies and cats, the way she would light up when her kids came in a room. She was, like all living people, “using [her body] to the best of [her] capacity,” as Stella Young (2014, 5:34) would say. Somewhat unconsciously, I began to surround myself with people who understood this fundamental truth. As scary as it was to expose the raw beating truth of my family’s illnesses and of my status as gene-positive for Huntington’s disease, the feeling of being held made the risk worth it. I’ve found people who won’t be afraid of me or only see me as my disease when my symptoms develop.

As valuable as that community has become, I am still a person who looks to pop culture for comfort, for escape, and for guidance. I just need better stories of disability and chronic illness, ones that don’t trade solely on trauma, like Special. Special was an American comedy creating by and starring Ryan O’Connell, who has cerebral palsy and is queer. In the show, O’Connell plays a character who grapples with his own identity as a disabled and queer man, and the show depicts the intersection of those identities with nuance and sensitivity. The show doesn’t pretend Ryan’s disability doesn’t exist or that he can overcome it with a positive attitude; there’s an explicit discussion in the show about how disabled people aren’t inspiration porn. But it depicts him living a full life – having sex for the first time, navigating his own internalized ableism, finding disabled friends.

In many ways, Special constitutes the kind of pop culture that represents queerness and disability with a complexity that I would have loved to have seen as a teenager, and that I need to see now as an adult. Maybe in the rewatches of ER, I’ll look not just for entertainment or for those brief, painful depictions of Huntington’s disease, but for the stories of people still being alive, laughing, talking, and forming connections, even if their health has worsened. I suspect I’ll need those stories as I join their number and become disabled by my disease.

References

Young, S. (2014, April). I’m not your inspiration, thank you very much. TED. https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much/transcript?subtitle=en