Content note: Frustration of being disabled, ranting about society, capitalism.
Going forward this blog will have content notes at the start of every post to make it more accessible.
Sometimes it feels like the only emotion that really encapsulates the disabled experience is frustration. I think able bodied people expect things to be a lot less centred around anger; they expect us to be either sad and self-pitying or blithely ignoring our disability in order to forge our way forward and “not let it hold us back”. Yes, those are themes too, but if it’s anything I’ve found to be the crux of my disabled experience it’s flat-out frustration.
Trying to be a freelancer is a difficult job. Marketing yourself as a business, sourcing clients, networking – these are all things that are difficult because they’re not handed to you on a platter. Growing up, I was taught at my prestigious school the skills necessary to become an office monkey; to pursue a job where I answered to someone above me, and did my work dutifully and to spec. In some respects all schools encourage this, at least mainstream ones. In a way it’s puzzling – the private (paid for) school I attended tries hard to promote an image of internationality, free thinking and creativity; in a way, it does do this, but it also attracts parents on the basis of its students grades, and the proportion of students that attend high flying universities. The “free thinking” it encouraged was a mantra that was trotted out every so often, but was ultimately meaningless. In the end, exams were passed by churning out answers expected of us. We studied for hours things like, “When the exam question asks us to ‘Consider this’, that means we have to provide an answer of about 3 paragraphs. When it asks us to ‘Investigate this’, the answer becomes 5 paragraphs.” Since when is language so stiffly regimented?
Entrepeneurialship was always frightening until I had no choice but to do it. When my health declined I could no longer leave the house on a regular basis to work a typical job; my only option was to work from home, to essentially establish myself as a remote freelancer. I had no frame of reference for this, and it has been enormously frustrating to me that I was not taught how to pursue a career path outside of big corporations. And looking through the LinkedIn profile of my ex-classmates this is illustrated better than ever: Marketing Assistant at one huge conglomerate, Financial Consultant at another. Rarely do any of them seem to work in non-profits, or as freelancers, or in creative positions.
I’m not trying to pooh-pooh these jobs. They are respectable positions no doubt with hard work involved. But these are the jobs that we were trained for. In a way, I can thank my illness for pushing me out of the safe and narrow path I was on – although mine was academia, which I also see little of in my ex-classmates. My point is, freelancing is hard, hard work, with which I have had little guidance.
I once read something that’s stuck in my head ever since – “Having a disability is like having a full-time job.” I think that’s a perfect summary of what it’s like to be constantly fighting against your own body, to be constantly trying treatment after treatment in an attempt to improve your own health, and to be living with the stress, guilt and depression of it all.
As a freelancer, I can’t go out and meet people in person as easily as an able-bodied freelancer could. That puts me at a disadvantage. Does being disabled on top of that help? Hell, no. It definitely feels sometimes like juggling two jobs. On some days, my CFS manager will order me to take a nap – if I ignore him, he’ll get mad and dock my pay (my energy). If I listen to him, that cuts into precious time I could be working on my freelancing. If I ignore him, I’ll have to listen to his continuous shouting whilst I’m working on my freelancing, to the point where I can no longer concentrate due to the volume of his shouting.
On other days, I’ll have to turn down potential networking opportunities because my CFS manager needs me to be in “the office” that day.
I work hard. I have no choice. Do I believe that if I were able-bodied and working a typical 9 to 5 job, I’d work less hard? Absolutely; call me arrogant if you like. The irony is that because my illness forces me to work from home, I must work harder to compensate for what I lack.
And I make much, much less. Society is full of this idea that art is easy, or that it’s not worth payment, or that artists don’t need to make a living. Anyone who is friends with a working artist will know about the dreaded currency of “exposure”. And in this economy where people are pinching the pennies, paying money for a high quality art piece is less appealing than buying a mass-produced cheap print.
I would make more than I currently do working at McDonald’s full-time. Not much more, but more.
It’s considered passé to discuss one’s finances in public. But disability cuts someone’s wages to a pith of what it was before. Disability is an enormous factor in poverty; I don’t know many disabled people, certainly not with chronic illnesses, who are well-off. And for those of us who are lucky enough to have a passion we can pursue from home, we must work harder to accomodate for our other job: our disability, and often see very little reward.
Yes, being disabled is frustrating. There is no happy ending to this blog post, no uplifting “inspiring” message at the end. Inspiration porn helps able bodied people feel better about themselves, and that is not what this blog post is for, nor what I exist to do.
Disabled creatives deserve support, and recognition of how hard they work.