Becoming chronically ill at the age of 18 wasn’t a shock. That would imply a startling, one-off incident that sparked everything to go after it. No – becoming chronically ill, or more accurately realising I was ill, was a slow, unpleasant dawn. And the diagnosis of Chronic Fatigue Syndrome (CFS) wasn’t a lightbulb going off, an “ah-hah!” moment, and in reality it wasn’t even really a relief or an answer. CFS wasn’t an explanation, it was a label slapped onto cases that mystify medical science. There was no cure offered to me on a plate, and no biology given for what was happening to my body. To this day my poor health can be somewhat flippantly reduced down to “I’m tired, I’ve been tired for seven years, and no one knows why”.
Those of you who know me and know my work will know that chronic illness is a theme in many of my pieces. How could it not be? I once heard a saying, “being disabled is a full-time job”, and it’s utterly true. From when I wake up to when I go to sleep, disability rules every second of my day. It’s difficult to explain what it feels like when disability becomes such a commonplace aspect of your everyday life that you forget how it felt to exist any other way. Before I got sick, I would never have been able to comprehend that existence. Before I got sick, I didn’t even know chronic illness existed.
Disability is disregarded by abled-bodied society as irrelevant. Unless it directly affects you, disability is a phenomenon that manifests itself through occasional glimpses of wheelchair users and the sign on the accessible toilet. It’s articles in tabloids claiming someone climbed a mountain and never “let their disability hold them back”; it’s the opportunity to think, “thank god that isn’t me.”
My schooling was expensive. Parents paid for their kids to learn what they might not learn at other, less prestigious schools. They wanted a varied and whole education for their children; learning languages, literature, music, drama – all the things the cultured generation of tomorrow might need to succeed. In amongst this was art class. I hasten to point out that despite enjoying drawing from the age of 4, I never scored any particularly impressive grades at art class. “Art” class was really small modules that dipped your toes into everything from pottery to collages. Alongside these practical skills, we were taught about various artists of note. Van Gogh, Dali. The only artist whom included a theme of disability was Frida Kahlo.
In retrospect it seems strange that in learning about an artist like Van Gogh, who suffered from depression, psychotic episodes, and other mental health problems, we never learnt about his neurodivergence. Whether you categorise his flavour of neurodivergence as a form of disability or not, the point is that it was considered insignificant in learning about him as an artist – if memory serves correctly. Yes, we knew he was “the artist who cut off his own ear”, but that was treated as a sort of humorous eccentricity, or was seen that way by us students. It is true that 12 year olds are prone to disrespect and facetiousness, but it wasn’t much later that we learnt about Kahlo and her disability.
We knew Kahlo was disabled. We were told about her life, including the accident in which she became confined to bed rest in a plaster corset, and shown her paintings inspired by this period of her life. Interestingly, I don’t recall being told that she had already been disabled prior to the accident – from a bout of polio as a child – or that the bed rest was temporary and she felt the effects of the accident in the form of pain for the rest of her life. The paintings we were shown were a rare, unapologetic depiction of sickness and disability, but the focus was on a small snippet of her life.
Was it that as a 12 year old I found the accident most memorable, and so that’s all I recall learning about? Or was it that it was the central focus to captivate our attention, a decision made by teachers because of a sense of ableist sensationalism? It’s impossible to know without going back in time.
Kahlo was an amazing woman, and there are plenty others who have spoken about her life and the impact she had on the art world; I won’t try and show off my limited knowledge. But knowing that she suffered from invisible, chronic pain for her entire life connects me to her stronger than before.
When I became ill, I had no frame of reference for what my life might become. Chronic illness is invisible to the eye, but it is also often invisible to society. How many people are aware of invisible disability before they’re affected directly by it? Where is it in the media, in movies, in TV? In art?
I think back on every occasion I’ve visited an art gallery and I don’t recall a single depiction of chronic illness. Would having something to hold onto, something well-known, have helped me through my initial transition period? Yes. In comics, I remember Barbara Gordon, the Oracle – but again, as a wheelchair user, she slots into a very narrow depiction of disability. That is not to say that people with chronic illness can’t be wheelchair users, but as a disabled person who doesn’t currently use one, it often inspires a feeling of being neither able-bodied enough for the abled, nor disabled enough for the disabled.
Of course I think the Oracle is a great character; any (respectful) depiction of disability is better than none, however limited. And I’m sure there are characters and artists out there who do explore chronic illness, but I haven’t come across them yet, and that’s an issue in itself. Hollywood takes the lives of artists, and it takes comic book stories, and it extends their reach. It adapts them into something that many more people will see, that could become a part of the collective consciousness of Western society. It rarely, if ever, chooses chronic illness.
Producing chronically ill art, and supporting chronically ill artists, is crucial. Awareness is achieved not just through informational leaflets, but through media and fiction, and creative pieces. Would I like to go into a gallery and see a painting about what it’s like to live with chronic fatigue? Hell yes. Am I likely to see that? Not at this point in time.
So please, support those who are disabled and creative. Encourage filmmakers to explore disabled themes. And make sure that chronic illness is not forgotten, despite how invisible it may appear to the naked eye.