K. A. is the Senior Policy Manager for Common Justice.
A truly equitable world means the needs of disabled people are not only considered, but prioritized.
The week before COVID-19 officially "hit" New York City, I was already experiencing my own form of self-imposed social distancing. After a couple of weeks of relative calm, my chronic pain was experiencing another intense flare-up. Besides going to my day job as a macro social worker, I was forcing myself to stay home and avoid socializing. The pain was too unbearable for me to be in public more than I had to. I ate takeout food nightly because standing to cook felt too difficult. My partner ordered me an uber home when shooting pain wouldn't allow me to type up notes at my job. Every day seemed to melt together, as I experienced nausea from my shoulder aches and waves of guilt from my exhaustion and unanswered texts. Periods like these can last several days or even several months.
When I'm in pain, minutes turn into hours. My first instinct is to panic. I start wondering how long my flare-up will last, how I will navigate it, and how I can hide the pain. How much rest can I give myself before I look like a lazy employee? How many times have I canceled on this person before they think that I'm actually blowing them off? Simple conversations are hard to focus on as I feel pain radiating through my upper body, causing chronic exhaustion as sitting or standing upright feels like a chore. My mental health is impacted by the shame I feel, and also by the constant cycle of thoughts in my head that all turn back to: am I just making this up?
When I'm not in pain, I live a fairly busy life. I work, see my friends often, and I'm actively involved in NYC-based community organizing groups. Staying outside of my house keeps me feeling happy, even if it means just reading at a local coffee shop, or walking to a nearby park. I'm active and social. I bounce around on the A/C train in Brooklyn to organize meetings and workshops and walk down the street to visit friends. One could say that I live a "double life," but I disagree – both of these versions of myself need to be tended to, held, and respected. It's difficult to ask for this because I am disabled.
I call myself disabled because I am. This does not mean that I am calling my body "bad" or "wrong." It also does not mean that I am "differently-abled." (I'm not given superpowers that suddenly override my physical pain like some sort of formulaic plus/minus system). When I call myself disabled, it means that there are structural barriers in place that prohibit me from having my access needs met.
While having these access needs met would improve life for everyone, my needs are deemed unimportant because I am not able-bodied. Due to capitalism, we live in a society that prioritizes the needs of bodies that are deemed most "efficient," and able to contribute to employers making money, with as little disruption as possible.
I didn't always refer to myself as disabled. Though I've been struggling with chronic pain for almost four years, I was under the impression that everyone lived like this. I thought everyone felt these types of aches in their body and attributed it to something I was doing wrong. I frequently told myself that if I just invested in better shoes or a more expensive mattress, everything would be fine.
A close friend and pod-person suggested the book Care Work by Leah Lakshmi Pipensza and it changed my life. In Care Work, I learned what it meant to navigate the world as a disabled femme of color with radical politics. I was able to envision networks of support called care webs, and find out what materials I needed to carry with me daily to make sure my access needs were met. Care Work helped me get rid of the stigma that the word "disabled," used to carry for me. I now saw it as a freeing and unifying term, something that appropriately summed up just how much my life was disrupted by my almost daily pain.
Another thing Care Work taught me, was just how innovative disabled people are. Disabled people often have an impressive amount of experience in building digital connections. We may feel isolated from able-bodied people around us or want to build relationships with people who have similar diagnoses or politics. Disabled people are also often used to rationing things, whether it be food, time, or medicine. We have to plan several days in advance because we're unsure of how we will feel the day of a major event. Disabled people are also pros at slowing down. We often work on "crip time," meaning we work to accomplish goals, but we also make sure that the work aligns with what our body needs.
One important thing that COVID-19 has illuminated, is that many people are unsure of how to advocate for themselves in a medical profession. To be disabled means to be used to hearing "no," and having to learn how to hold your own in conversations with nurses and doctors. To be disabled is to be in a constant survival mode, which is both exhausting and isolating in and of itself. With social distancing becoming an accepted part of life, many people are wondering about ways to survive the virus. My advice is to start by listening to us. As disabled people, we know what it's like to work towards building a better world while navigating the one we currently have. In fact, many of the medical emergencies happening right now could have been avoided if our needs were centered in the first place. Many disabled people have been advocating for better work-from-home policies, with the knowledge that the majority of their job can be done remotely. Disabled people have also asked for additional money from jobs to be spent on things like "wellness" and "health," needs that sometimes fall out of the guidelines for what can be covered by health insurance. Disability justice activists have stressed the need for more Medicare for All, and also expanded training for ER doctors and nurses. Disabled immunocompromised people have also discussed how difficult it is to navigate going outside with a mask, and the harsh judgment that usually follows. Things like slowing down, caring for those who you may not know personally, and working to check on your neighbors are also things that the disability justice movement is no stranger to.
For many people, COVID-19 symbolizes the end of life as we once knew it. We are restructuring our plans for the future, the way we envision the world, and how we want to invest our time once social distancing is over. In my opinion, COVID-19 can also symbolize a beginning. This can be the start of many people's quest to build a less ableist society, which is a life-long journey for many of us. Through uprooting structures of oppression, but also addressing how ableism shows up in our interpersonal relationships, we can begin to move towards a truly equitable world in which the needs of disabled people are not only considered, but prioritized.
K.A., is a macro social worker, writer, and organizer based in Brooklyn.
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