In Sickness and in Rage
How do we transform anger into justice?
Trigger Warning: This month’s newsletter contains dark themes, mentions of suicide, mental health, and vaccines.
I thought it was about time to broach the subject of chronic illness in the pandemic. I have been conflicted about how to approach it. Recently, writing has been escapism for me, and quite honestly, I have been scared to delve into the grubby depths of now, and the extreme ideological winds engulfing us.
It can appear that life for people with disabilities and chronic illness is improving. There is increasing awareness about accessibility, thanks to the work of tireless campaigners and social media (I will include some UK-based campaigners down below). As much as we criticise the ‘online-ness’ of life nowadays, it has been revolutionary in amplifying the voices of those not given a platform previously .
At the same time, disturbingly eugenicist narratives were gaining ground even before the pandemic hit. “Only the sick and vulnerable and elderly”, will be affected when we return to normality, we hear. We shouldn’t continue to give up our “liberties” (not wearing a mask/ flying abroad/ attending large concerts) because the general populace isn’t at threat (which isn’t entirely true anyway).
Like many, I am exhausted by the conversation. Confirmation bias is rife, even with our expanding access to knowledge online, and it is only compounded by social media algorithms. Today’s divisive philosophies run deeper than the news sources one chooses to read, and it is easier than ever to find material convincing you that what you believe is right.
Addressing Anger
The disregard for the vulnerable has disturbed me. The pandemic has made life harder for disabled people. We talk about the ‘benefits’ the pandemic brings, in terms of being able to work from home, the amplification of disabled and chronically-ill voices online, but the diminishing access to care, hospital appointments, the increased isolation and loneliness has threatened the well-being of those relying on aid in their communities or from public services.
In fact, I am furious about it. My stomach tightens when I hear that “only” the “vulnerable” will be affected, “only” the elderly will die. That pervasive utterance of “only”: a word both so innocuous and malicious in intent. The indifference some friends and acquaintances showed towards vulnerable people during the pandemic upset me. Originally I had thought about dedicating this newsletter to ‘friendships and ableism’. I did a poll on my very small Instagram account and around eighty-odd percent said that the pandemic had caused them to re-evaluate some of their friendships. Of course, in times of crisis it is natural that one shifts and re-prioritises aspects of their life. Letting go of friendships is a natural part of movement and growth, but it’s all happened so quickly that feelings of loss and grief are heightened.
On a personal level, things are going well in my life, better than they’ve been for a long time. My health has improved. I’ve begun working regularly after a long period of sickness. Getting double vaccinated has been a huge relief. Like many others with a chronic illness, I have been living a hermetic existence. I will continue to do so as I am desperate to fly over to the UK at the end of the month and see my family after more than a year and a half.
I understand that not everyone can choose to live this way. I am aware that the situation is more complicated than everyone implies. Do I think most of us should get vaccinated? Yes. It is the easiest way out of this mess, and it will protect others. Preventing avoidable deaths is not up for debate IMO. It is a messy, loving human trait. We are a strange species. An “invasive” species - my friend Anna would say. We thrive on love, communities, protection - we get warped and broken hearted if we don’t have access to it.
However, I am not ‘team vaccine’, in the sense that I don’t involve myself in the militancy and self-aggrandisation of the pro-vaccine movement. For me the vaccine is a practicality and not an ideological war.
Re-thinking how we can define ‘the vulnerable’?
What some of us forget is that social-distancing and self-isolation aren’t possible for everyone. In fact, for some, it's been incredibly dangerous, particularly for people with mental illnesses and drug addictions.
Those without stable housing or work have suffered too. Sex workers could not afford to isolate. I confess I hadn’t thought about it thoroughly until I started following the work of Sarah Jane Baker. Her story gripped me. She is a trans sex worker and was released from prison in 2018. Serving a thirty-year sentence, she was the longest serving trans prisoner living as a woman in a male prison. Like so many in the prison system, she had a turbulent start in life and was a victim of abuse, which only continued when she was in care.
It doesn’t end there. Baker also experienced extreme levels of abuse and corruption in the prison and criminal justice system. Since being released, through various solidarity groups - including Wasp Collective, an organisation led by and for queer sex workers - Baker dedicates her life to activism, public speaking and making art. Her work serves as a reminder that the aforementioned public services are in crisis, and quarantine has not made these problems go away.
In fact, Baker's story gave me the kick up the bum I needed. The isolation of the past year had begun to narrow my beliefs about collective responsibility, as let’s be honest, it has for so many. My own vulnerability made me excessively fearful about people. I believed almost no one would be taking precautions to protect the chronically ill. I began to lose sight of what collectivism really was, an idea that had always been important to me. Like so many others, I have been susceptible to the biases of these divisive times.
The story of Belly Mujinga
Belly Mujinga was a black woman, chronically ill and mother to a young child. Mujinga had no choice but to work unprotected on the frontline for GTR, a train company in London, at the beginning of the pandemic. These were the days before masks were obligatory. GTR had told Mujinga that she had to work, despite the fact that her illness, a severe form of Sarcoidosis, was on the records of its in-house medical team, though it was not at that time on the government's list of high-risk conditions. Whilst on the concourse, she was spat in the face by a man who said he was infected with Coronavirus. She died weeks later, in the wake of the BLM movement. Neither justice, nor compensation, has yet been served and her family continue the fight, which you can follow here.
We mustn’t forget that people from a lower socio-economic background are most vulnerable to the spread of Coronavirus. People that work in exploitative jobs that don’t give them the option to WFH or contest their conditions. People from lower socio-economic and minority groups are most likely to suffer from chronic illnesses worldwide.
We can see from this BBC article that poverty, crowding and poor housing in the UK has worsened during the pandemic, regressing to Victorian standards. We must remember that social distancing and WFH is a privilege. This is a reminder to myself, and others, to adjust anger or frustration about the lack of social distancing and masks.
The struggle of the disabled is a class struggle and an anti-racist struggle. It is why activists took a nuanced approach to the pandemic during BLM protests all over the world last year. It is why activists in Glasgow (a city I lived in for ten years, that is dear to my heart) mobilised to stop a deportation in the early hours of the morning in May 2021, despite restrictions and warnings about the spread of the new Delta variant. They told the Home Office: “you messed with the wrong city”. Nicola Sturgeon, famously tough on lockdown, in contrast to Johnson’s relaxed approach in England, also criticised the Home office, and not the protesters, for creative an unsafe environment, “in the heart of a community celebrating Eid”. Cheering on the action from my Instagram stories, I saw activists encouraging everyone to wear masks, get tested and vaccinated.
Activism FOMO
This touches on another sore point for me. My lack of presence on the streets as a “former” activist, regularly pounding them to protest, organise and assemble for social justice. Of course, my illness has made this difficult.
Having said that, I have been loosely involved in a local cultural group of anarchists and artists in my hometown of Jerez de la Frontera. I have contributed to this group by making media content, being involved in socially distanced open-air film nights, supporting local solidarity efforts remotely, and running a ‘Rebel choir’ session, before it was postponed due to the quarantine. After the choir session, I was high on the love and communal vibe of the room, but also nervous, for myself and the older members of the group, whom I felt responsible for. To be honest, when the second lockdown was announced I felt as relieved as I did with the first. This seems to have been a common experience for fellow chronically ill and disabled people, as well as introverts. So many of us have been grateful for a break from the tyranny of extroversion, and the opportunity to WFH when it was possible.
How can I reconcile these two parts of my being? The need to permit myself more rest, recuperation, accept my corporeal limitations, but also to use my new-found, relative stability by offering solidarity; by not over-simplifying to suit my world view. This is not a new quandary for me. I have always suffered from fatigue and the exhaustion of social anxiety, never feeling comfortable behind a megaphone or on a street stall.
It was for this reason that I started the ‘Rebel Choir London’ in 2017. One day, amid the tumult of a large march against the privatisation of the NHs, I crossed the path of The Strawberry Thieves, a choir singing about social justice. As their melodious song washed over us, I felt a moment of calm. I later got to know them and the choir leader well. I knew I couldn’t carry off the level of professionalism and complexity of their repertoire, but I knew I liked singing and had a strong voice - so I started my own choir.
Singing Through the Blues
I started the choir with someone I met in Focus E15, which is an organisation of activists and mothers who fight for housing justice in London. Her name was Ella Bradbury. She was a kind but fierce soul, and someone I developed a strong connection with. We both had fire in our bellies but were consumed with anxiety. She helped me set up The Rebel Choir in the Focus E15 space before she left to live in Mexico. At that time, I was able to achieve some peace and relief in the act of singing with others, and I believe Ella did too.
One of the biggest challenges of the choir was that it was political. Everyone tended to have a strong point of view, and these views often diverged. I invited activists and singers to teach and share music, and some would find the songs we sang too extreme, and others not radical enough. I was in a phase of extreme people-pleasing at that point, so it was exhausting. Despite this, I cannot describe the serenity and almost spiritual zen I felt after a two-hour session of collaboration, until we were all literally and metaphorically, singing from the same hymn sheet.
Tragically Ella died two and a half years later in Mexico at the age of 29, just before turning 30. It hit me incredibly hard. Primarily it was the sense that the world had lost this pure, unselfish soul, who used her time far less self-indulgently than I, continuously fighting for women and those who suffered at the hands of abusive governments or partners. To be frank, it also reminded me of a period of suicidal ideation I had around the age she died, two years earlier. Synchronically this period of my life was two years after another person I was close to died by suicide, aged 30. And there I was, on the other side, having just convinced myself life was worth living again.
In the period following Ella’s death, I was convinced that what had saved me was learning how to be selfish. Learning how to put myself first. I thought that I had simply learned to shut out the heartbreaking and unjust stories I heard on the street, or the things I witnessed whilst in a precarious living situation. I was surrounded by other people in unstable housing situations, which has a proven link with mental health problems. My reaction wasn't a healthy one. I used her story as another stick to beat myself with. I was the selfish one, and that was why I was still living.
"Anger is not transformative, it is initiatory." Ruth King
I know now that my anxiety and depression was a side effect of unresolved anger. And we go back full circle. The point of this quote is that anger is not always negative. It can be a useful tool to get us fired up to act. But if you let it take over, the injustice of it all, it can eat away at you.
Nowadays, I take a more balanced approach. I believe you can give solidarity to others whilst giving solidarity to yourself. Many things have taught me this, for example, intuition and wise friends. It was part of that intuition that prompted me to start The Rebel Choir. I knew it could be a route for people like me, struggling with anxiety, public speaking and crowds to express their solidarity in a loving way. A gentler way, though not without its power.
As James Connolly said:
“No revolutionary movement is complete without its poetical expression… Until the movement is marked by the joyous, defiant, singing of revolutionary songs, it lacks one of the distinctive marks of a new popular revolutionary movement; it is the dogma of a few and not the faith of the multitude.”
Songs of Freedom in 1907
Chronically ill and disabled people need not feel that their only choice is ‘turning up’. As Connolly acknowledges, movements are also built by ‘poetic expression’ whether that be singing, making films, writing or visual art. Personally it is challenging for me to be ‘physically there’ most of the time. I’ve realised I’d rather focus on what I’m good at and channel my energies into writing, singing or making films.
My perpetual conundrum has been how to give solidarity, but care for your body and mind. We all need to learn that being physically there isn’t always necessary. I have witnessed activists with this reductive, on-the-ground approach. At times, social justice movements, that raged so angrily at capitalism, were in some way imitating its model of little rest, and virtue in over-productivity. There is an expectation that anyone can turn up to long meetings or arrive in inaccessible places. This approach does not consider people that have mobility needs or who suffer with mental exhaustion from anxiety, sensory overwhelm, or cognitive issues.
Slowly more people are becoming aware of diverse needs, but it has not reached the larger consciousness yet. What if the role of ‘activist’ was focused less on being perpetually ‘active’, but more on activating ourselves and others to use our strengths, and what truly motivates us? Can we examine our expectations about how a disabled person or an activist should look and behave?
When I speak about my limitations, I focus on the ‘physical’, the matter of my mind and body, because I know that my heart and spirit is boundless, and it can’t be measured by productivity metrics. As such, we can say that Ella’s spirit lives on in The Rebel Choir here in Jerez, now called El Coro Rebelde Ellie Bradbury (Ellie was the name she was commonly known by).
That’s what I want to impart here, the knowledge that there is always something to give, even if your body needs all the rest in the world. There are no absolutes. The world is bigger and beyond how we see it now. These days it can seem so unbearably small. It is true that the coronavirus pandemic has revealed the extent of the disparities and divides all over the world. Yet we know it is not the root cause. We can and will get through it, through both solidarity and self-compassion.
Below are links to instagram accounts of organisations and individuals who campaign about disability, chronic and mental illness
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