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Exhausted? Slow Down and Listen (to Disabled Wisdom)

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Monday, June 22, 2020

Guest blog by Erika Katzman, PhD, OT Reg. (Ont.), and Assistant Professor of Disability Studies at King’s University College at Western University.

When I met Gini* five years ago, I was surprised to learn that she doesn’t get any extra break time at work. The context of our meeting was that she hired me to give her a hand with everyday physical tasks: things like dressing, using the toilet, and getting in and out of bed. At home, Gini’s personal support needs are met by a publicly funded attendant care service. When Gini travels, however, she pays out of pocket for supports that can travel with her.

Because I help Gini with toileting, I know that it takes her at least 15 minutes to execute a simple pee break. When I am at work, my relatively able body can pop in and out of a washroom in just a couple of minutes, sparing me plenty of time to enjoy a restful lunch break. For Gini, much of the lunch hour is taken up by the bathroom break itself. Meeting and greeting an attendant, travelling to one of few on-site accessible washrooms. Far too often, waiting for that washroom to become available. (The frequency with which accessible washrooms are occupied by someone taking a nap, or an extended privacy break of some other sort, is astounding.)

When I met Gini, I asked her, why doesn’t she ask for a longer break? Surely, she needs and deserves the same opportunity to rest mid-day that most others are afforded in a typical lunch break. The answer was more complex than I could have imagined. The anticipated bureaucratic response: Would her employer even understand the ask? The anticipated perception and response from colleagues at work: How unfair! We all have to use the bathroom; we could all use a longer break… These considerations surprised me less than the next: The internalized concern that Gini describes, a feeling that she should be able to move through a workday on the same schedule as everyone else (perhaps beneath that, a feeling that she should be grateful just to have the job).

A couple of years after I met Gini, she started to experience some concerning physical symptoms. The details aren’t relevant; however, it became clear that Gini needed to spend some time away from work for the sake of her physical health. The stress of everyday life, keeping track and stock of medical supplies, directing staff through three or more personal care bookings each day, taking into consideration their needs and vulnerabilities while planning her own schedule; it’s a lot of work to do on top of the usual stresses of everyday life. And, all of this under the imminent shadow of declining health and precarious access to quality health care. It adds up.

I’ve asked Gini a number of times, why don’t you work from home? Wouldn’t the time saved on the commute, in queue for the bathroom, spare precious minutes in your day? Precious energy that keeps you breathing, that keeps your body well? 

Would that it were an option, her reply. Logically, logistically, there’s no apparent reason she could not do her job remotely. The technology is not there; it’s simply not an option, her workplace assures. Yet, as the present pandemic has now amply demonstrated, the technology was there all along; it just needed (willing parties) to be put into place.

An occupational therapist myself by training, I know well the importance of continuing to work with accommodations (vs. taking a complete sick leave). Financial security aside, work gives us a routine, social interaction, a sense of accomplishment, of challenge. It is well known that the longer employees are off of work, the greater the likelihood that they’ll never return. Our society loves to make assumptions about disabled people, that they can’t or probably don’t want to work. Gini’s story is not uncommon: a drive and desire to work, a lack of accommodations. Sure, we can build you a desk, rearrange some furniture in your office. But work from home? On a reduced load? Stereotypes about laziness, that cast disabled people as cheats taking advantage of the system, preclude that possibility. 

And yet, here we are. A pandemic hit and suddenly accessibility-as-working-from-home was no longer a uniquely disabled issue. We weren’t prepared to make these accommodations for one person, 100 people; 25% of the population, give or take. But, as soon as it became a question of productivity and profits, the technology was suddenly located and put into place; in a matter of days, no less. We weren’t willing to do this in order to enable people to participate in the societally, often individually valued occupation of work. Not for people, anyway; but for profits? Absolutely.

The pandemic has shone a light on many systemic issues, issues that affect disabled and non-disabled people alike. But in this pandemic, as in everyday life, the circumstances affect disabled and non-disabled people differently. I am exhausted from hours of zoom calls. My relatively able mind is drained for having spent the last two months figuring out how to work from home, how to manage a completely new way of doing life. Now that some of the initial uncertainties have settled, I’m starting to feel comfortable getting back out in the world, slowly and tentatively expanding my social circles. As a relatively able-bodied person, I am compelled to wear a mask in public; less to protect myself than to protect more vulnerable others. My body is resilient, I am able to fight illness quickly and easily under most circumstances. For all I know, I may be an asymptomatic carrier.

Like many right now, I am relishing the slower pace of life that this pandemic has ushered in. I am concerned that others like me aren’t grasping the privilege in these claims. As I savour peaceful aspects of my quarantine, Gini continues to navigate interactions with attendant care workers several times a day. These interactions are now infinitely complicated by questions about safety, protection, contamination. It’s not just the interactions that are complicated, but the internalized messaging they’re laden with: historical myths, about contagion, disease and human value. The histories of this trauma are both generational and personal. 

When I offer to come and visit, Gini reminds me that there are severe restrictions in place on her home, because her home is a workplace. Already-present tensions are heightened in this context, as administrators gain even more decision-making power, given their responsibility to protect both clients and staff. The public nature of Gini’s private space is more pronounced than ever. For Gini, this invokes a trauma response, triggering memories of institutionalized life wherein individual autonomy is always a secondary consideration—behind paternalistic safety protocols and resource constraints. Even in interactions with loved ones and friends, it is hard to distinguish, Gini explains, between protection and avoidance. Are they protecting me, or afraid of me? Does my now-more-visible-than-ever mortality call to mind their darkest fears?

Gini uses a ventilator to support her breathing day to day; the very piece of medical equipment that has been a focal centre of this respiratory pandemic is already part of Gini’s everyday life. In a world where the value of her life is ever in question, is she also at risk of having that vital piece of technology taken away to save a life deemed more valuable than hers? Should Gini fall ill and arrive at the hospital, will her fragile lungs be given the priority attention they need? Or will she be overlooked? So much of Gini’s life is spent self-advocating for her needs, fighting against systems that readily exclude her, systems that reaffirm the apparent lesser value of her life and needs at every turn. Should Gini fall ill, who is going to fight for her?

These are scary times for us all. But, for many reasons, this pandemic is much scarier for some. Eugenic pasts are suddenly starkly visible in practices that rank the value of human lives along ableist lines. The precariousness of care systems is thrown into sharp relief against a backdrop of crumbling care facilities and home care abandoned by underpaid and ill-supported workers. The sudden willingness to accommodate non-disabled workers with the same technologies that have long been denied to disabled people is a slap in the face of claims to disabled rights to equitable citizenship. 

This pandemic rouses discomforts as it causes us to look in the mirror: to see the ugly face of a society that consistently chooses profit over people. This society privileges abled bodies and minds; but the pandemic is also a sobering reminder of the vulnerability and precariousness of all human life. While the non-disabled dedicate much of their lives to rituals that affirm their vitality, disabled people have little choice but to embrace the realities of human frailty: the body’s groans, leaks and aches. While the non-disabled divert their attention from these painful truths, disabled people cultivate profound wisdom to survive, adapt and thrive; attending to individual and collective needs—some which are bodily, many which result from oppressive societal structures.

From the accommodations that are allowing us to continue or to proceed in daily life with a modicum of normalcy, to the very life-saving technologies that are sustaining people through this pandemic, disabled wisdom surrounds us. Knowing rooted in everyday lived disability experience holds immense and untapped potential to heal our very sick world. Pandemic begets tragedy, yes; but in this forced moment of slowing down there is an opportunity to listen and to learn from those whose bodies have been begging, demand that we do just that. Disabled people do struggle everyday: with bodies and minds, maybe; with oppressive structures, absolutely. But struggle as vital experience begets expertise to navigate challenging times. 


Further Reading

Green, M. (2020). Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands. Retrieved from: https://www.kqed.org/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hands

Hamraie, A. (2020). Contra* Podcast “Solidarity Chats” Series. Available at: https://www.mapping-access.com/podcast

Kent, C. (2020). The Coronavirus is Putting the Failings of Ableism and Individualism on Full Display. Retrieved from: https://wearyourvoicemag.com/coronavirus-individualism-ableism/

Kukla, E. (2020). My Life Is More ‘Disposable’ During This Pandemic. Retrieved from: https://www.nytimes.com/2020/03/19/opinion/coronavirus-disabled-health-care.html

Piepzna-Samarasinha, L. L. (2017). A Modest Proposal for a Fair Trade Emotional Labor Economy. Retrieved from: https://www.bitchmedia.org/article/modest-proposal-fair-trade-emotional-labor-economy/centered-disabled-femme-color-working

Shanouda, F. (2020). Disability Saves the World Podcast. Available at: https://disabilitysavestheworld.podbean.com

Wong, A. (2020). Disabled Oracles and the Coronavirus. Retrieved from https://disabilityvisibilityproject.com/2020/03/18/coronavirus/



* Pseudonym.

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