When I was nine, a swimming instructor tried to teach me how to dive. I was expected to kneel—bum-on-feet style—at the edge of the pool, while placing my palms together, putting my head between my forearms, and using my knees as leverage to glide in to the water like some kind of majestic dolphin.
Unfortunately for me, kneeling was a skill I hadn’t been able to achieve since the age of four, but instead of explaining this to the instructor, I just kept saying “I can’t” over and over again, as the thirteen other girls in my class watched.
“Just put your bottom on your legs.”
“You jump off the dive block every other week.”
“This is much easier.”
“Good, so put your bottom on your legs.”
Oh, it went on.
She thought I was scared, and kept encouraging me, telling me it would be ok, that nothing bad would happen and so on. I wasn’t having any of it, and the cycle continued for what felt like hours. It wasn’t until I was on the brink of emotional breakdown that I finally whispered, “I have arthritis and I can’t.”
She kindly asked me why I didn’t say that in the first place, and instructed me to dive in whatever way was comfortable. I was traumatised after that ordeal, and utterly confused by the fact that I was traumatised. Until then, I thought I was confident I had accepted life with a chronic illness.
In 1988’s Die Hard, 33-year-old John McClane (played by Bruce Willis) jumps all over buildings, runs over broken glass, dodges bullets, throws people off skyscrapers, and performs an impressive amount of stunts that are outrageously exciting to watch. Over the next thirty-odd years, despite a brief stint with alcoholism, John’s life remains in a state of perpetual excitement, beating the physiological odds by managing to up his physical stamina with each film, and finally peaking as a senior citizen with the ability to defeat a helicopter with a truck while restrained by steel chains.
With all that in mind, it stands to reason that he would be somewhat physically impaired by the time he reached fifty-eight and 2013’s A Good Day To Die Hard rolled around as the franchise’ fifth installment. Realistically, he was probably dealing with osteoarthritis, Ankylosing spondylitis, liver problems, heart disease or, at the very least, a bad back. Strong and fit as he was, after more than thirty years of working in such a physically demanding field, even John McClane would not be able to escape the physical impairments of old age. Fortunately for John, he lives in a Hollywood fantasyland where his entertainment value is based on how unrelatable he is to a real-world audience (despite his ‘everyman’ profile), and musculoskeletal problems barely exist.
In the world of visual entertainment, almost everyone has a biodome immune system, completely impenetrable to attack. If a character has a health problem, it’s usually a comical device, a symptom of something life-threatening, or the reason someone became a villain. If you Google ‘films about disease’, you’ll find a series of infection-based apocalypse films. If you search a bit harder for a film where disease is not depicted as a code-black pandemic, the focus is on illness as someone’s whole life experience, rather than just a part of it.
Films like Rain Man, I Am Sam, and What’s Eating Gilbert Grape portray the hardships of living with illness, but they also strongly promote feelings of sympathy towards the ‘normal’ family members or care takers who must overcome frustrations associated with their relationship to the person with the illness. In this way, the illness is seen as the protagonist – a hindrance or enemy to defeat, and obscures the individual. The characters become the illness, and we run the risk of painting them as unusual, despite the fact that statistics show almost half the potential viewers live with chronic illness.
To put it in perspective: there are eight internationally-recognised diseases classified as ‘chronic’, including arthritis, asthma, back problems, cancer, chronic obstructive pulmonary disease, cardiovascular disease, diabetes, and mental health conditions. According to the Australian Institute of Health and Welfare, one in five Australians were affected by multiple chronic diseases in 2015, and around 12-million have at least one chronic disease – one of two people you walk past in the street. In the United States, more than forty percent of the population suffer from at least one chronic disease, and arthritis is listed as the major cause of chronic pain and disability in both nations.
Despite these figures, before I was introduced to a community of kids with arthritis at the age of nine, I thought I was alone. As far as I knew, no one at school had what I had, or even knew what it was – arthritis wasn’t discussed outside my family. Even today, a surprisingly large number of people don’t know it’s a problem affecting children. To be fair, hearing that it affects one in 1000 kids in Australia makes it sound pretty uncommon, but when you consider the population of people under fifteen years old in Australia is around 4.5 million—almost the entire population of Sydney—and around 4,500 of those children will be diagnosed with arthritis, it starts to sounds a bit more commonplace.
Thousands of miles away from my hometown in Sydney, a girl named Ashley was growing up in Pennsylvania. Like me, she was living with arthritis, and like many, was influenced by pop culture. “I didn’t see the stars of the movie Clueless, or the girls on 90210 or The O.C., or pop stars like Britney Spears and Beyoncé laying in bed sick, or walking with a limp, or taking ‘old lady’ medications for their ‘old lady’ illnesses,” she says. “I compared myself to impossible standards of perfection, and I compared myself to my peers at school, and at times, I felt like I was ‘less than’ because of my sicknesses.”
As Ashley grew older, she developed a series of other illnesses, and has devoted her adult life to challenging the stigma around chronic illness under the name Arthritis Ashley. She has penned three books, spoken before Congress, won blogging awards, written for a number of magazines, Tweeted with Oprah, among many other achievements – but despite her work, she is still treated differently.
“People treat me with pity or with ‘kid gloves’,” she says, “and then at other times, people tend to seem like they think I’m exaggerating or being melodramatic. It’s a no-win situation: people either fawn over you too much, and make too big a deal of your illness, or they show no empathy or understanding at all. As an author, I aspire to write fiction that features sick or disabled characters in a multi-dimensional and intersectional way. Our diagnoses are a part of our character, not the whole thing.”
Ashley isn’t alone in her quest to normalise living with illness. There’s a community of people of all ages dedicating their careers to fighting the stigma, as well as encouraging others to speak out about health issues in an attempt to accurately redefine ‘normal’.
Erica Lupinacci and Allie Cashel are working to beat perfection ideologies with their website, Suffering The Silence. Erica has lupus, and Allie has chronic Lyme disease: they joined forces to combat the stigma against chronic illness using art, media, and storytelling. “Chronic illnesses are rarely discussed in pop culture, and it’s something we want to change,” says Erica. “Selena Gomez has become more vocal about her journey with lupus, which has been incredibly admirable. I am an actor with big career goals so it’s helpful to see someone so successful speak about her experience.”
Counsellors, psychologists, and teachers are also highly aware of these issues through their clients, and agree that current ideologies surrounding illness are doing more harm than good. Special Needs Counsellor, Naomi Buck volunteers with Homeschool Base in the U.S, and has worked with children who can’t go to school because they’ve been bullied so badly due to chronic illness.
“In today’s generation, we appraise our own self-worth based on what we see in pop culture,” says Naomi. “So many people are sensationalised, as though we should all be able to achieve their success, but there are so many famous people who did nothing worthy of their own success. Imagine what it’s like to see someone like that on a TV show like Real Housewives or Jersey Shore and compare yourself to them, now compound that with having a chronic illness or disability. It is a gigantic self-esteem problem.”
Consultant Psychologist, Leonie Hehir from the Victorian Counselling and Psychological Services says a major factor effecting children with chronic conditions is the fact that they want to be like other kids, but know they are different. “When their experiences are too dissimilar from their peers, and other kids they see in films and on TV, they can learn to define themselves by their illness and their inabilities.”
In the years following my diving experience, I realised my reaction that day was not dissimilar to my reaction any other time I had to unexpectedly explain the reality of my health. It was always confusingly traumatic, stemming from the fact that I really only accepted it on the condition that no one else had to, relying on its invisibility, and maintaining my reputation as a ‘normal’ person.
I was fortunate to have had the opportunity to recognise that I wasn’t alone through the community I joined. But on the other hand, children shouldn’t have to have a revelatory experience like I did in the first place, especially when so many children and adults are dealing with the same thing.
If almost half the population has a chronic illness, chances are it’s your friend, parent, sibling, teacher, or partner who deals with it every day. If popular culture started portraying sickness as an everyday thing, and if Hollywood protagonists like John McClane experienced muscular wear and tear, maybe the overwhelming amount of people suffering in silence wouldn’t feel so isolated and abnormal. Arthritis and back problems may not create live-or-die drama in Hollywood, but that’s not to say they wouldn’t deepen the plot and create complications. Obstacles, complexity, and depth of character are all part of what draw you in to a story – wouldn’t A Good Day To Die Hard have been more impressive and exhilarating if John McClane was trying to save the world from his bed while recovering from a hip replacement, a locked knee, or constrained flexibility as a result of osteoarthritis?
For me, being open about my arthritis wasn’t an option. I knew it didn’t fall in to the realm of what any film or person considered normal, so like many others, I tried to hide it, and remained unaware of the normality of my health. Had I been frank about my condition that day and uncaringly jumped in to the pool, perhaps I wouldn’t even remember it – the fact that I can recall it so clearly speaks volumes about how important I felt it was to conceal the information.
But when I think about it now, all I did that day was overcome adversity, take someone’s advice, then do it my way – which is, in essence, what happens in most movie plotlines. What if our heroes were portrayed as normal people, impairments and all, achieving mind-blowing victories against the odds? Now those are films I’d like to see.
Charlotte Karp is a writer, editor, coffee enthusiast, and former Sydney-sider currently living in Vancouver. She is the founder of travel site and story-sharing platform The Global Shuffle, and likes to spend her spare time traipsing around new cities in high heels, looking in antique shops.