Luck, an unusually high tolerance for throwing myself into the disquieting unknown, and a measure of family privilege have allowed me to forge a path through the working world that is best described as an erratic squiggle. A long arch here, and there several tight, retraced crooked lines doubling back on themselves darkly, shooting back near or behind square one, before darting forward to another page once more. The luck comes in because for all of the crisscrossing and backwards movement, the map of my employment is dotted with many points of interest and so far, has always kept me finding new territory.
For working-age disabled people in America in 2018 there is little assurance of any sort of direct access to meaningful employment. Certainly, the disability rights movement has made tremendous progress, yet according to the U.S. Bureau of Labor Statistics, the employment-population ratio for disabled people between the ages of 16-64 in 2017 was only 29.3%. In contrast, the ratio for people without disabilities in the same age range was much higher: 73.5%. Those of us who work are the fortunate few teetering on the knife’s edge of the employment gap separating us from our unemployed disabled siblings.
Currently, I have a job I enjoy that pays a living wage, has good health insurance, and allows me to work surrounded by supportive coworkers with significant knowledge of the social model of disability who are enthusiastic for me to succeed. In my late thirties, this is the first job I have ever had that offers all three of these at once.
Arriving here took more than a decade of sitting through countless job interviews that I knew were already over at first sight of my bent frame, interviews where I was told about an undependable previous employee with a “back thing,” and getting advice from well-meaning loved ones that I shouldn’t even mention my very visible disability at a job because I’m not “really disabled.” It has meant years-long streaks of un- or under-employment and an internalized expectation that I won’t be taken seriously.
No matter how hard I work, even while employed in the inclusive promised land, I will never be able to forget my past, nor would I benefit from doing so. There is a power imbalance between disabled people and the non-disabled that we are still far from evening out. The weight of this imbalance comes with the knowledge that if I lose a job there is no guarantee of another.
In my teens and twenties, I thought that non-disabled people must be supermen, possessing qualities that I, a lowly citizen of Metropolis could never hope to match. At that time, when I was employed, I hid my disability. Using all of my energy to do tasks the way that everyone else did them rather than ask for simple adjustments that would allow me to save energy and be more productive. Never speaking up when I was having a flare, working through them in ways that prolonged them and put my health at risk. This trap of not wanting to become the next disabled jobseeker’s “bad back” story, and employment insecurity demanded that I never acknowledging my body in any way that might be construed as complaint; even in the face of non-disabled people around me talking constantly about their own ailments. My silence was read as laziness and lack of interest. It wasn’t until I was in my thirties that I began untangling myself from these toxic lessons.
I wanted to understand how other disabled people are navigating these circumstances, so I posted a brief questionnaire to social media to find out. When asked, “What would your ideal workplace for yourself or other disabled people look like?” F Stuart, a photographer/educator replied, “If I could be HONEST about who I was without being judged (or treated like a freak) for it. I wish there were MORE disabled people in the work place. A larger variety of people always makes a work place better because everyone doesn’t assume everyone can understand each other and seem to try harder to communicate.”
The employment gap fails disabled people because it leaves us with so few people ahead of us to look to for guidance on our own journeys. Simultaneously we are left looking for work in a largely non-disabled-led and created system among an almost entirely non-disabled workforce. Though untrue, I often find myself grappling with the sense that I am the “first” disabled person to do almost anything. In situations where non-disabled people turn to one another for advice I must improvise. Often my best guess is wrong.
I am not alone in wishing for an easier to navigate path. Those of us fortunate enough to be in the 29.3% may often feel isolation and pressure to perform to needlessly impossible standards. Yet we represent progress. When I was born, this number would have been unfathomably high. We are the makers of maps. My greatest wish is for those who follow to have gentler paths.
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