When your disability is invisible and intermittent, it can be hard to even acknowledge its role in your life. But doing so changed my life by letting me rest and shift my priorities towards self-care rather than trying to meet an unachievable ideal.
When you suffer from an invisible disability, it’s easy to forget that you are disabled and that you have a right to accessibility.
I have major depressive disorder, the chronic kind. When not medicated, I go through short periods of “okayness”, followed by long periods of deep, disabling depression. When medicated, I am generally okay most of the time, but extra stress, busyness and worry can send me off into a depressive episode.
I’m not saying this to get “poor you’s” from you, dear reader. This is a preamble to talk about how acknowledging that my illness is a disability, whether or not it’s active in the moment, has helped me redefine what self-care looks like for me, and how I go about making my choices differently.
Invisible and intermittent, but a disability nonetheless
It was on my second attempt to work a full-time office job after quitting my PhD in 2011 that I realized that I just could not. I lasted exactly 6 months in each case, and by the end of both I had recurrent thoughts of throwing myself down the building. At first I thought it was just a personality thing: I am fiercely independent and require large amounts of autonomy to work well. But my second job had both those things, and yet I still hit that 6-month wall.
At first I believed myself lazy, undedicated, morally insufficient: if I cannot handle a full-time job, maybe it’s me that’s wrong, not the work. I just need more discipline, more self-control, more willpower to overcome what I believed were personal failings.
I had forgotten that I am disabled.
It wasn’t until the end of my first year back into school full-time that I had to reckon with that fact.
My disability is invisible. It’s in my brain, not physically accessible. When it does express itself physically, it is in invisible ways: physical pain, tiredness, lack of energy. It’s also intermittent: I am not in the throes of depression all the time. Right now, I am doing fairly well: my grades are up to my expectations, my work is good, and I have enough energy to get involved in new and different things.
But I am still disabled.
A bad night’s sleep, a financial setback, conflicts with friends or simply the wear and tear of life can get to me unexpectedly. One day I feel fine, and the next I can barely get out of bed.
I’m an A student and I can get work done, but I also live with a permanent Damocles’ sword above my head, ready to cripple me in an instant.
Until this winter, I had never dropped a class. I was proud of the fact that I could maintain a full (5) course load despite my mental illness. But in January, as I reckoned with the competing demands on my time, I had to make a choice: my sanity, or my pride.
In a world obsessed with appearances and productivity, my pride seemed like the logical choice. I struggled with the decision until I realized that my sanity was worth more than an unachievable threshold of work.
I live in Canada, but the American work ethic is always close by, ready to spill over the border and force us into ever-increasing work hours. In 2017 in Canada, the average work week was 40 hours. Overall productivity is way up, salaries are stagnant or down, and people are going crazy from overwork because of the disappearance of the social safety net.
I mention this because I had to take stock of all the expectations that I have internalized in a capitalist society. Kristin Hambridge calls them “coercive narratives”. My shame at my inability to keep a typical full-time job and my need to slow down clashed. “If I cannot work that much, or study that much”, I thought, “will I be considered a fully contributing member of society?”
I developed worries about my future career in public health. Will my needs be considered? Are there part-time jobs that will be professionally fulfilling and pay enough to live on?
Although these are valid questions, in the end, I cannot let them get in the way of living my life. “We’ll cross that bridge when we get to the river”, as we say in Québec. My priorities right now are finishing my degree, renewing my intellectual life, and writing more. This means balancing my need for rest with my scholarly and professional obligations. And sometimes, like last afternoon after class, it means sitting in my couch nest with designer pop, Masters of Sex, and a purring kitty on my lap until bed time.
Challenging disposability culture
Seen in a wider context, my life is a study in challenging disposability culture.
Disposability culture: the political practice of disposing an individual of their personhood under the assumptive logic that the rest of humanity will be better off.
In other words, under disposability culture, someone like me who can’t produce at 110% of their physical and intellectual capacity 40 hours a week is a burden on society.
For me, fighting disability culture means fighting for my right to make a decent living even if I work part-time. It means constantly advocating for myself and others with disabilities so we can have the basic respect and dignity that all humans are entitled to. Others fight disposability culture with selfies, with comics, with comedy, or with political activism.
Fighting disposability culture means believing that all bodies and minds with all levels of abilities are worthy and bring something essential to the world. It means believing that each and every one of us is indispensable.
I’m a fat, sterile, bisexual, non-monogamous, unmarried white woman with too many degrees and a love of afternoon naps. I am also disabled.
I am worthy of love, pleasure, a dignified living, and a place in my community. And if I have to, I will fight, for myself and others who would be disposed of.