I’m writing from the small cabin to which I’ve retreated during the pandemic. The silence here is broken by the soft hum of insects and the occasional groan of the nearby barn door swinging in the wind.
This stillness is a familiar swirl of both sadness and relief. The feeling is stagnant. I’ve been pulled into it many many times before by the undercurrent of my life: a debilitating chronic condition I’ve struggled with since I was 12. My condition often leaves me working against the pain, teeth clenched; it leaves me home after long days lying on the floor in my bedroom trying to cry and groan as quietly as possible (don’t let my roommates hear!), rendered unable to stand and cook myself dinner, or simply stuck calling in sick yet again bracing for the disappointment and frustration in my boss’s voice, wondering when they will finally fire me.
At 12 my pain came and stole my agency before I even knew what agency was, leaving me a helpless subject to its whim. So yes, that feeling you’re having now – out of control frustration, uncertainty, fear – I know it. We know it. According to the National Health Council, roughly half of American adults have at least one chronic condition. Half. Where are these people? Do you know us? Have you asked? Better yet, have you believed us? Have we been too scared to tell you?
I’d like to think that in the last month or so you’ve had some conversations about racism. I really hope you have. Hard not to, given the painful reality of racism in America. So let me ask you another question: Have you had a conversation about ableism? The two, like all forms of oppression, are deeply intertwined.
We are living through the largest global health crisis many of us will likely ever see. This has come hand in hand with the increased visibility of racist violence by a bloated, overfunded, and corrupt police system. How are we NOT talking about people with disabilities? Judgment and shame, through racism, misogyny, ableism, heteronormativity, and other oppressive realities, are all branches of the same, rotting tree. We must address them as one. A study conducted in 2016 by the Ruderman Family Foundation found that between 33 to 50 percent of people killed by cops are disabled. The number is broad because researchers “...lack comprehensive data sets,” which in itself is a problem.
The foundation concludes that “Disability intersects with other factors such as race, class, gender, and sexuality, to magnify degrees of marginalization and increase the risk of violence. When the media ignores or mishandles a major factor, as we contend they generally do with disability, it becomes harder to effect change.” This is what solidarity, mutual support for a common goal, and intersectionality, overlapping and interdependent systems of discrimination or disadvantage, is about.
Ableism is defined as “discrimination in favor of able-bodied people.” And unfortunately, I cannot teach you how to not be ableist. It is just as engrained in every one of us as all of the aforementioned issues. I am white, 20-something, cis female, relatively fit by appearance – I experience a very particular breed of ableism that is, at times, covert. The fact that my condition, like many others, is invisible, means that now it’s up to others to decide if it’s real.
The assumption is I should be healthy and able-bodied, and if I act otherwise I’m overreacting, faking, or looking for attention. In 8th grade my teacher told me in front of my whole class that she knew I was making it up. Most of my friends and peers sided with her. After that, I stopped telling anyone about my condition. I did what so many others have and internalized the judgements of those around me, now struggling every day to perform the perverted, deadly norm of nobly suffering in silence. These experiences are all too common.
I work with people suffering from chronic conditions and hear this archetype constantly. These judgements come from doctors, friends, family, and partners. They come from the broken idea that we can understand the struggle of others – that we know what someone else might be dealing with just as well as they do. It is a perversion of empathy. These are more covert ways of discrimination (less direct or openly acknowledged than the infamous incident in 2016 where Trump publicly mocked a disabled reporter). And with our covert biases unacknowledged, we separate from people we consider the “real problem,” patting ourselves on the back and excusing ourselves from doing the work to unlearn all biases we possess.
Maybe the pandemic could be a waking up point for some, just as the recent slew of racially motivated murders by police has been for many. After all, Black Americans are more likely to live with a disability, no matter their age, according to the National Disability Institute.
This global pandemic poses complex and confusing concerns to those living with chronic conditions, a population which already struggles with the anxiety and unpredictability of changing health. For many individuals with these conditions the prospect of sudden debilitating illness is something we are all terribly familiar with. Now we are surrounded by a world of people echoing our fears with inexperience. Perhaps some of us have longed for others to understand these fears, for a little empathy to be grown from the harsh soil of a society built only for the able bodied.
Yet here we are with a wonderful opportunity for a shift in perspective. Do you feel that happening? The movement to create a society that works for all is necessary, and it is happening as we speak, yet I don’t hear conversations about disability. After COVID-19, will you understand when I’m unable to work because of a change in health, one that I have no control over? What about when I’m irritable from the soporific weight of constant precaution and wondering? Somehow I don’t think so. I see people already beginning to slip back into their comfortable shells of prejudice and self-protection, some even exploiting the idea of disability to claim exemption from the need to wear a mask.
In order to make progress with such issues we must not let them go undiscussed. We must have conversations with ourselves and others. I’ll leave you with some things to think about: what does one do when they find themselves unemployed due to a global pandemic, and yet they don’t qualify for unemployment because they were unable to work full time due to their preexisting health issues?
You’ve felt a taste of the anxiety that comes from precaution. Imagine that every day. Forever. Are you scared of the potential medical cost if you or a loved one contracted COVID-19? What if you had to pay for expensive pain medication every month? To see the doctor with every small shift in your health? What if you can’t afford insurance or it doesn’t cover what you need it to?
Most importantly, how can this whole experience allow you to grow and nourish your empathy for others, to challenge the biases within your own conditioning and listen? Let’s talk about it.
Published in Counterbound Magazine, August 2020
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