Our Biggest Hidden DisAbility Challenge: Working
This is the spinoff post from my review last week of Michele Lent Hirsch’s Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine. In her chapter on work, she acknowledged that the biggest work challenge for anyone with a disability is the workplace itself. We must adhere to a schedule and go to a physical workplace that may or may not be comfortable for us, and work a set number of hours under supervision. Everyone who belongs to this blog’s target audience probably cringed at every clause of that sentence. Let’s parse it, shall we?
We must adhere to a schedule… I remember my years of conventional employment as a haze of sleep deprivation. Honestly, the first time in my adult life that sleep wasn’t a major concern in the quality of my day happened a few weeks after I lost my job during the 2008 downturn. I woke up one morning without the tyranny of an alarm and felt… rested. It was a new feeling. Even weekends had felt more like a hangover from binge sleeping. It was rarely a matter of me deliberately staying up too late. My upstairs neighbors have robbed me of sleep in all kinds of ways, but sometimes it was enough just to know my alarm was set for 6:00. That made me anxious about falling asleep “on time,” so of course I laid awake all night.
I know I’m a grown woman and grown people get out of bed and go to work, but I always felt specially persecuted by the expectation of getting up early. Now that I’ve been grievously and permanently injured, sleep is even more vital to me. I usually don’t make it through the entire day without a nap, even if I woke up fully rested that morning. My body just needs more down time than it used to. The most positive step I’ve taken for my health in recent years is to work from home. With no commute, even if I’m expected to be on duty by 8:00 AM, I can roll out of bed at 7:45 if need be. Knowing this, I usually fall asleep easily and get up with the sun.
…and go to a physical workplace that may or may not be comfortable…I remember 14-hour days on my feet in retail. I remember leaning over a pantograph engraver for hours while sitting on a backless stool. Even when I “graduated” to an office job, I got repetitive stress injuries to my wrists and back pain from my chair. I spent $900 of my own money on an Aeron chair (best money I ever spent, I’m so grateful to have it now). One company moved us into a new “state of the art” office space with cubicles that were built for men over 6 feet tall. I had to raise my Aeron chair and use a foot rest just so I could reach the counter. When you are in a workplace, you have little control over the facilities there, and no place to go for a break from them. At least when I’m home, I can move from my office to my reading chair to my patio. All of the furnishings are mine; I chose them and they fit me.
…and work a set number of hours…I don’t know about you, but my body deals in cycles of flare-ups and recovery. Some days I’m up for 6 hours of work, others only 2. An 8-hour day is a rarity. I need to be able to flex my time, so let’s say I need to write a report that typically takes 20 hours to write. It’s due Friday. If I begin on Monday, I can get as much done as I can each day and get it in on time, perhaps early. If I had to go to an office and stay there for a set number of hours, I wouldn’t last long and my work would be of poor quality. I kept records for the Department of Vocational Rehabilitation and color-coded each day on a chart. Red days meant I was a mess and wouldn’t go to work at all if I had a job to go to. Yellow days meant I might be okay but I’d have to be careful not to overdo it. Green days were great days when I functioned normally at home, was able to bike downtown on errands, and generally felt strong. I was surprised to find that 15 percent of my days were red days. I had an artificially high expectation of my own body. Find me an employer who would put up with 15 percent absenteeism. Which brings me to…
under supervision. This is a huge problem for many of us. I need breaks, say, 20 minutes working to 10 minutes off. I work by billable hours, so it’s easy for me to prorate my time based on how much housework I got up and did between stretches at the computer, that sort of thing. If I want to take a walk or ride my bike downtown for errands midday, that’s up to me. It would not be if I had someone watching me. It’s hard to claim that extra breaks are reasonable accommodation when the rest of the staff, who don’t look any different from me, don’t get them. Being under supervision just doesn’t work for most of us. We need to deliver a product on our own time and bill fairly for it, with no one counting our bathroom breaks.
Good work from home is hard to find. I’ve tried services like FlexJobs and found some good leads, but also a lot of flaky employers with unrealistic expectations, even among their curated listings. I’m lucky to be contracting to someone from my old office job right now and doing the environmental permitting I built a career on from home.
What gigs are you doing? Are you satisfied with your work? Do you have any resources for finding home work that you would recommend?
, . (2018). Our Biggest Hidden DisAbility Challenge: Working. Psych Central. Retrieved on April 26, 2018, from https://blogs.psychcentral.com/hidden-disabilities/2018/04/our-biggest-hidden-disability-challenge-working/