Sixteen years ago, I lay awake on an operating table while electrodes were implanted deep in my brain. They needed me awake — not to share that I was deeply scared or bewildered to be lying there, but to obtain the right kind of feedback that ensures the tiny wires in my brain would shock and buzz in such a way that my movement disorder, called dystonia, would be quieted and controlled.
For 14 years, I had good results from the surgery. Yet over the last few years, the hardware has deteriorated — or my brain and its inclination toward dystonic movements is strengthening — and my difficulty in walking is back.
Since 2019 and throughout the pandemic, I have been pursuing treatments, procedures, and even another brain surgery.
My disability experience is unique to me. Yet, there is a universal aspect of disability that is rarely discussed: the immense physical and emotional work of being disabled, and how that work is compounded exponentially during a pandemic.
For me, that labor looks like this: countless doctors’ appointments and X-rays and scans, hunting down medical records and a three-hour neuropsychology exam to measure my memory, problem-solving skills, and other cognitive functions.
It also involves endless insurance co-pays, scheduling hell, constant troubleshooting on managing my limited mobility, self-doubt about symptoms and what could be done differently. Not to mention mitigating all possible risks of contracting COVID-19, by limiting travel and time with friends and family and calculating the chances I will catch the virus in a store, an office or on the CTA.
All this is on top of the labor of my job, my family, maintaining my home and all the other things that are part of daily life.
Too often a focus on health, the body, or the mind is often done privately, with promises of no disruption and little interference with business as usual. The reason for this is usually a fear of being seen as “less than” in the workplace, or considered a burden to others. This is known as ableism — and if you are a person with a disability, it’s known as internalized ableism — and 16 years ago it compelled me to make promises to others that I would be ‘back at it’ really soon, and to apologize deeply for any unexpected inconvenience.
My worth was tied deeply to my ability to be productive, even if the toll on my body was extreme. And I was back at it after a few weeks, despite experiencing pain and residual swelling in the brain that left me wide awake at night and deeply fogged during the day.
With the #DonewithCOVID push to “open up” and “get back to business as usual,” I can’t help but consider at what cost does the ableist push for productivity come, especially for people with disabilities?
With the mask mandate now lifted in nearly all public places, for many disabled people the prospect of getting COVID-19 isn’t just an inconvenience — it is life-threatening. Even if we survive, the likelihood that our disabilities will be exasperated, complicated, or made worse is elevated.
The impact COVID-19 continues to have on the immune-compromised, the elderly and the disabled is passingly acknowledged in news stories and in speeches made by elected officials. We are reminded that dangers still linger, as if we didn’t already know. Productivity trumps the safe and well-being of individuals, especially those with disabilities, and those with the privilege of going maskless are prioritized in policymaking and in our society even though their choices have grave consequences on our bodies.
For the last two years, the labor disabled people expended to protect our bodies from COVID is considerable. And as the “return to normal” continues its churn, the hard work of being disabled will be made even harder.
Emily Blum is executive director of Disability Lead, an organization that works on issues of equity and inclusion for individuals with disabilities.
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