BY AZEEZAT JOHNSON
I have been processing the widespread anxiety caused by an illness that knows no borders and has no cure. As my loved ones and colleagues know, in October 2017, I received a call that I had been dreading for the previous 10 years: the cancer had returned. Anyone who has dealt with that type of call before knows that this is one of those moments where your soul feels frozen in horror. For so long I felt trapped in a body (and a world) that kept on failing me and my hopes for a future. The threat of death entwined with a cancer diagnosis has made me starkly aware of how quickly and brutally my life could be cut short.
This is where I must begin any response to the Covid-19 pandemic. After all, it’s been the cancer that has informed my sharp awareness of death, not Covid-19. Witnessing the fear surrounding Covid-19 reaching our homes in the West has made me think about my own complicated relationship with uncertainty surrounding illness. Over the past three years, I have already had five surgeries related to cancer growths. I’ve spent so much of this time finding a way to love my body and life whilst still fearing (and in some ways, mourning) a death that always feels right around the next corner. Yet it has been a love for my family, friends and wider community that has helped me to retain a sense of who I am and what I want from my life. I’ve come to realise that I want to spend my time on this earth (no matter how long or short that might be) working towards a world where we do not have to desperately shout that our lives matter.
My hopes for a world where all our lives actually matter is paired with my fears of the reality of our present. After all, the racist logics of “taking back our country” and “getting Brexit done” that led so many to vote for Brexit and Boris showed what we already knew to be true: white supremacy is entwined with Western societies’ claims of freedom and liberal democracy. Even though People of Colour have repeatedly warned against the violence of the UK’s nostalgia for empire, many took every opportunity to tell us that things weren’t “that bad”: they argued that if only we were a bit more patient, if only we worked a bit harder, things would eventually get better. My fear of speaking up against our present is informed by my awareness that Women of Colour who speak their minds are often bullied out of online spaces, bombarded with micro-aggressions in everyday conversations, and killed in homes and on the street. When demanding recognition and respect for all of us to be whoever we need to be, I am awash with a fear of how my words could be distorted and expose me to further emotional, verbal and physical abuse.
As I’ve struggled with my need and fears in speaking, I look again to Audre Lorde. Her words about fear and survival have taken on a new meaning for me, as she was—amongst many other powerful traits—a Black feminist who faced cancer one too many times before her eventual passing.
And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full we are afraid
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
but when we are silent
we are still afraid
So it is better to speak
we were never meant to survive.
(Lorde, 1995, p. 32)
What does it mean to speak remembering that who we are (and all that we are) was never meant to survive? Survival has taken on a terrifying meaning for me as I reckon with the uncertainty that cancer brings to my possibility of life. This has become even more suffocating as I navigate the “when we get through this” comments that people have already been using in relation to Covid-19: many of us have not and will not survive this. Yet Audre Lorde would have also been thinking about survival as a Black lesbian mother of Black children who knew how easily her and her children’s lives could be threatened, dehumanised and murdered within white supremacist structures. Remembering to speak in this context means demanding the space to be more than our dehumanisation: remembering to speak is a refusal to stay silent about structures that continue to kill us.
The Covid-19 pandemic has forced me to realise how deeply I’ve internalised silence when it came to the cancer. For so long I have been afraid that my struggles with cancer would become public knowledge, as I am all too familiar with how my body then becomes up for public consumption and debate. Even while our bodies are objectified by the state (as a problem worth a quantifiable amount of care), it’s been even more terrifying to open myself up to the inevitable overstepping of my personal boundaries. Time and again, when I mention the cancer, (friendly) acquaintances and colleagues have felt entitled to ask deeply personal questions and expected me to repeat and relive the most traumatic events in my life to satisfy their own curiosity. As they wait for the “right time” to ask me how and when it happened, I know that my own needs are irrelevant: my body becomes a physical reminder that illness is terrifying and I am forced to hold their emotions as well as my own.
Covid-19 has made me process the extent to which people with disabilities and chronic illnesses are dehumanised whilst our labour is exploited within structures of racial capitalism. While we have all been subject to incessant statements about “standing by the vulnerable”, I am aware of how our lives have already been condemned by successive right-wing UK governments that have stripped the NHS and welfare systems to the bone. Even as there is now a larger conversation about how illness should be connected to our struggles for better living and working conditions, many have been able to file the pain and deaths of people with disabilities away; it becomes discussed as a pitiable consequence of austerity measures. I’ve been stuck on the feeling that part of what people are processing in this moment is that the same systems that have been failing dis-eased Others could now also fail them. And as I feel my rage bubbling over at this superficial and delayed concern with health and well-being, I know that rage is the last emotion they want to process from a disabled Black Muslim woman. What they are looking for is sadness and/or gratitude: sadness that I am one of the vulnerable who doesn’t fit, and gratitude that they are willing to try and save me. I know that in ableist white supremacist structures, I can be read as a suffering victim or a brave survivor, but not as a person deserving to simply be.
While feeling my way through a pandemic that reminds me “we were never meant to survive”, I’ve also had to face some ugly truths about how I too have invested in this systemic dehumanisation. Covid-19 and other coronaviruses have been treated as a problem of East Asia: so many of us bought into the belief that the borders informing the West would protect us from this plague and so we could divorce from the disaster of these diseases. Even as we’ve been reeling from the need to support those abandoned by failing welfare systems in our own countries, I’ve been struck by how this crisis connects to global supply chains and white supremacy. Where are the statements from multinational corporations about their factory workers in Black and Brown countries who have had to work through all manner of illnesses and catastrophes to survive? How much further could we be with treatments and vaccinations if the violence of borders and racial capitalism didn’t infect so much of our worldview?
This is where I’ve been returning to Audre Lorde’s adamance that self-care is political warfare. Lorde’s demand for self-care was connected to her awareness of how difficult it is to receive (emotional, financial, social and health) care as a Black woman dealing with a chronic illness. Self-care when “we were never meant to survive” means refusing any part of a system wherein particular bodies are deemed unworthy of our full and complex lives.
Covid-19 has made me feel even more urgently that this type of self-care is only possible through connecting my own life to the many others beyond Britain’s borders. I’ve been trying to slow down to better care for myself and a world that has been struck by disaster and disease (long before Covid-19 ever made it to these shores). We cannot continue expecting those who face oppression to swallow their pain and “wait their turn” as we work towards a different world. We need to build an ethics of care that centres those who are continuously forgotten once disaster strikes: as many have said, justice and freedom for all is dependent on justice and freedom for the most marginalised. It is not possible for me to honour my own right to life without also honouring theirs.
I began this piece with my fears of the cancer and my sense of urgency in speaking out for a different future wherein all of us can be who we need to be. Although I’d like to offer some profound solution for overcoming this fear, I’m not there yet. Fear remains a part of my life, particularly as I reckon with all of the ways cancer and Covid-19 can cut short my hopes for life. But I do know that staying silent, staying immobile because of that fear makes me feel further away from the people who I love and further away from the brighter future that I want for following generations (that means you Aneesah!).
That’s what I feel Audre Lorde was getting at: we cannot allow the fear that we will be cut down (verbally, physically or emotionally) to prevent us from standing tall and speaking out for what we know in our bones is right. Fighting for our own freedoms whilst erasing the experiences of those that are further marginalised does nothing but divide us from one another. Playing the “model minority” at the expense of so many others does nothing to help our fullest selves exist: all it does is shrink us into smaller and smaller boxes based on the assumed divisions amongst us. Thus I return to Audre Lorde once more:
We have chosen each other
and the edge of each others battles
if we lose
someday women’s blood will congeal
upon a dead planet
if we win
there is no telling
we seek beyond history
for a new and more possible meeting
(cited in Lorde, 1984, pp. 170-171)
Let us begin to choose each other, and fight for a world where all of us are celebrated for all that we could be.
Note: I have said all that I want to say about the cancer in this piece. As part of respecting my personal boundaries, please do not get in touch to discuss cancer further.
This piece was written for an event run by Farzana Khan and Healing Justice London; the follow-up event will be 7.30pm (GMT) Wednesday 8 April.
Azeezat Johnson is a member of the Feminist Review editorial collective.
Lorde, A., 1984. Sister Outsider: Essays and Speeches. Berkeley: The Crossing Press.
Lorde, A., 1995. The Black Unicorn: Poems. New York: W.W. Norton and Company.