By Amber Woodside, AMCHP Youth Voice Amplified Committee Member
I grew up disabled without knowing what to call it until I was almost 20. I speak more to my ADHD than the fact that I’m autistic in this context, but it’s important for me to say now that within neurodivergent communities, there is much valid variability in how and when people consider their neurotypes a disability or not. I say I didn’t know what to call it—perhaps it’s more accurate to say I didn’t know what it was called. I did call it things. I called it useless; lazy; broken; stupid; a burden; and selfish selfish SELFISH. Though no one’s particular fault, I spent my formative years understanding that motivation and productivity were the measures of not only success but of worth. When I wrote about personal heroes in elementary school, I wrote about people who did things. Their heroic nature came from the work they put in and the difficulty of that work, or maybe the difficulty that work presented for them specifically. I honored labor and toil and sacrifice before I knew what any of those words really meant.
I also grew up with a vast, almost crippling sense of empathy. I hold onto that to this day, still unable to even read a sad comic strip without significant distress that makes my heart race. Extreme empathy is one of the manifestations of autism, and it seems like not a lot of people know about this. Like much else that comes with autism, empathy is a quality that can be present in the “not enough” or the “too much” categories, but I digress. I still believe one of the primary ways to do good in this world, and especially to define what is good, is to make an impact on others in a positive way. What’s the point of doing good if it’s not helping someone? I don’t judge anyone in the least who doesn’t feel this way, but it’s my personal approach for measuring how I’m doing in life. Did I help? Good, that’s enough.
The convergence of these two value systems led me to eventually, perhaps unsurprisingly, become a workaholic, once I identified my ADHD for what it was and was able to get treatment for it. I took on—and continue to take on—full-time work, full-time college class loads, and enough part-time internships and volunteer opportunities to make two more full-time jobs. And I try to take care of the people I love in between before I do anything else. In American productivity culture, I am an asset: full stop. I am indispensable perhaps not in the quality of my work, although it is good, but in my unwavering presence, and my constant willingness to be there and available. It’s a difficult accolade to consider ever getting rid of.
My company has done a fantastic job of leveraging this increasingly ubiquitous and truly menacing idea that groups of coworkers are families in order to make me feel personally responsible for the wellbeing of the people who earn a paycheck alongside me. I’m not doing a disservice to Arby’s, the faceless corporation when I call off for a day. I’m making the day more stressful for my general manager, who I care about as a person; my young coworker who is also disabled; my line cook who had dinner with me at Cracker Barrel not so long ago. Social cohesion has been weaponized by this hustle culture we’ve fostered in our society, and my own values make me the perfect victim.
It is within this same hustle culture that disability becomes synonymous with selfishness and uselessness. This is where we learn those definitions, where we learn “what to call it.” Children watch the adults in their lives go to work sick and injured, because they “have to,” and the children then internalize the expectation, and on and on we go. Some people say this is inevitable; it’s “survival of the fittest,” or at least, you can’t expect to live in society without “doing your part.” (And why should everyone’s part be physical labor to begin with?) Yet as a species, this isn’t historically accurate. Archaeologists have found plenty of evidence that ancient cultures cared for their sick, their disabled, and their elderly as a matter of course. We are people—we’re not a herd of deer trying to stay alive as we cross the plains.
I have seen my generation dubbed the laziest yet, or something to that effect. This, in my opinion, is because we are breaking the cycle that demands relentless production, constant “doing” that overtakes our own self-love, self-care, and self-interest. I say “we” break the cycle, and yet I also know that hearing these cultural messages, on top of the ways in which I grew up thinking about my own disability and worth, hobbles me in pursuing my own self-care. I sit here writing this piece having had a seizure yesterday while convalescing from what is likely pneumonia (when it rains, it pours), and I will still be at my scheduled shift for work tomorrow. I will tremble as I ask if I can have three extra days off following my next two scheduled work days so that I can try and let my body heal—and that is if I can bring myself to ask at all. I am not alone in suffering from this stigma; I am not the only young person who ought to call off work or school tomorrow and who won’t. Our lives are so short—why should we keep filling them with expectations of work that’s “hard enough,” when it’s never quite enough to begin with?