What Can Political Activism Look Like When You are Chronically Ill?

When I was diagnosed with lupus in 2010 I was overwhelmed with a sense of relief. While that may seem counter-intuitive, it is actually a common feeling for folks who’ve gone undiagnosed for an extended period of time. I initially became sick for the first time in 2000. So after ten years of emergency rooms, specialist visits, and more than a couple of doctors accusing me of being crazy… knowing what was going on in my body felt like I was finally on the way to resolving my health issues and no longer having illness at the center of my life… oh how naive I was.

Over the next six years lupus continued to cause an ever-escalating series of issues in my body. In 2014 I was hospitalized over 20 times… in 2015 my number of hospitalizations were at 24+. At the same time, I’d moved to New York City, started a new job, and was completely broke. It was tough. I only knew a handful of people in NYC, only 2-3 of whom were willing to come see me in the hospital. It was an incredibly isolating couple of years, it felt like my identity was entirely circumscribed around my experience as a “sick person.”

How do you make friends when you spend almost every weekend in the hospital and you are to weak to leave your house during the week? How do you date when you constantly have to cancel plans due to the variability and unpredictability of chronic illness? How do you build relationships with your colleagues when you have to go on leave your first semester at your new job? More to the point of this particular post, how do you engage in politics when protest politics is the name of the game in the age of Ferguson?

Politics has always been a deep passion of mine. In undergraduate my identity was tightly coiled around my role on campus as a student activist. In graduate school I had the opportunity to participate in organizations like Ella’s Daughters, and to work for the Black Youth Project. But after moving to NYC and losing a significant amount of mobility, I was at a loss when it came to figuring out what my political engagement could look like while also nurturing and protecting my body.

Organizations in New York hold protest actions around the city all of the time. If you are able to march down Fifth Avenue, or chain yourself to a NYPD station, there are a limitless number of opportunities for you. But if you inhabit a chronically ill body and can’t stand on your feet for more than five minutes at a time, it can feel almost impossible to find a political home. Over the years I’ve emailed countless organizations, asking if they had opportunities for someone who wanted to volunteer, but who needed to remain seated. I’d ask if I could do research, write grants, perform administrative work, or even write policy memo’s. Nine times out of ten I never heard anything back. It’s been a disappointing experience. Now that I am spending less time in hospitals these days (the irony of course is that I am writing this post from a hospital bed), my desire to contribute to my community politically has only continued to grow. Unfortunately, the opportunities available to disabled folks remain few and far between.

So the question remains, what can your political activism look like when you are chronically ill?

In Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha does a beautiful job of weaving a critical assessment of the ableism rampant amongst organizations run by able-bodied folks of all identities, alongside her vision for disability-inclusive radical political work. Reading Care Work simultaneously made me feel less alone in the political isolation that I’ve felt living here in NYC, while also inspiring me to re-think, enlarge and re-imagine what my political activism could look like.

We talked passionately about how what we were doing in SDQ–the talking and the meds–sharing and the scheming and the life support–absolutely counted as activism, was a way we were transforming traditional notions of what activism was to make it over in our own cripped out images. And without that life support we were giving each other, we wouldn’t be able to stay alive to do activism, or life at all (2018, 62-63).

It was while I was reading Care Work that the light bulb went off in my mind. Suddenly I realized that I engage in political activism almost everyday. Every time I talk a friend with a sick child or parent, or whose sick themselves for the first time, through navigating hospital bureaucracy, and guide them through advocating for themselves, that’s activism! Every time I write about the rampant racism in the medical industrial complex, that’s activism! Every time I crowd fund money for a friend with a medical emergency, that’s activism! Every time I teach my students (who are mostly low-income, and/or black and brown) about how to construct a strong argument, and how to evaluate information, that’s activism! I engage in some form of activism almost every day of my life. But it is easy for me to miss because ableism has taught me that the only legitimate forms of activism involve public visibility, and bodily strength. As Leah Lakshmi Piepzna-Samarasinh reminds us:

Our movements are often filled with more ableism and burnout than they are with healing. We work and work and work from a place of crisis. Healing is dismissed as irrelevant, reserved for folks with money, an individual responsibility, something you do on your own time. Our movements are so burnout-paced, with little to no room for grief, anger, trauma, spirituality, disability, aging, parenting, or sickness, that many people leave them when we age, have kids, get sick(er) or more disabled, or just can’t make it to twelve meetings a week anymore (98).

To often, a willingness to work non-stop “for the movement,” “for the culture,” “for our people,” is seen as source of pride. If you are unable or unwilling to run yourself into the ground, the perception is that you lack commitment, or worse yet, that you lack solidarity. But the reality is that not all of our bodies can function in a state of burnout. Secretly, none of our bodies can, but there are some of us who can maintain the lie longer than others. A truly inclusive politics is not only concerned with providing material accessibility at events/actions (ASL interpreter, wheel-chair access, etc…). Our politics must also place socio-political-emotional-spiritual value on rest, nurturing, balance, and healing work.

At the end of the day, my political activism as a chronically ill person begins first and foremost with a commitment to healing myself, and healing my community. From there, my political activist work looks like doing the work that I was placed here to do: nurturing, healing, writing, teaching, and sometimes even speaking in public.

peace.

a