In terms of global visibility, LGBTQ+ Pride is thriving — judging by the amount of rainbow-branded corporate sponsorship at parades in cities across the world half a century on from Stonewall. Meanwhile, three decades since the Capitol Crawl, Disability Pride is still evolving, a jumble of mixed messages on social media blurring upliftment with inspiration porn — but at least the concept exists.
Fifty-five years after the World Health Organization recognized Myalgic Encephalomyelitis (ME) as a neurological disease, it’s high time we talked about the need for a different kind of self-esteem-raising visibility action: Sick Pride.
It is a savage irony that those of us with energy-limiting chronic illnesses who are far more functionally disabled than the conventional wheelchair user battle to be recognized as marginalized.
Those of us who are so severely disabled by ME and Long COVID that we are rarely able to leave our houses — or even our beds — suffer from an invisibility so total, most people are completely unaware of our existence. There were millions of us before the pandemic, and 400 million more since (and counting!). But we’re going to need a lot more than ramps to enable society to see us.
Of course, it suits our governments to keep us hidden away in the dark so we don’t scare the workers into realizing how vulnerable they are. It’s vital we shine a spotlight on ourselves to highlight the ongoing risk of mass disability due to repeated SARS-CoV-2 infections. But how can people with energy-limiting conditions march for our rights if we have negligible physical capability and exertion worsens our symptoms?
My colleague Mlindeni Gabela and I are pioneering a new kind of protest in South Africa: SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge, which we feel is a precious resource post-2020. Mlindeni is the Long COVID Ambassador for MELCuSA (ME and Long COVID Unite South Africa) and has been Sick since 2020. I’ve had ME since 1992. Like millions of other energy-impaired people, we are both housebound and I’m mostly horizontal.
For too long, we have been watching people with debilitating energy-limiting diseases suffer similar stigma and neglect to people living with HIV in the 80s and 90s.
South Africa had the highest death rate due to AIDS in the world in the early 2000s. The Treatment Action Campaign (TAC) countered the dangerous denialism of President Thabo Mbeki by promoting HIV visibility. Critically, the group popularized wearing bold T-shirts to unashamedly display their HIV-positive status.
TAC took the government to court to demand treatment to prevent mother-to-child transmission. My adopted son, born in 2004 to an HIV+ mother, owes his life to TAC’s tireless advocacy. TAC also challenged the scientifically averse policies of Mbeki’s Health Minister Manto Tshabalala-Msimang, who infamously promoted garlic, lemon and beetroot over antiretrovirals.
Former President Nelson Mandela, whose son Makgatho later died of AIDS, acknowledged his tardiness to act at the outset of the HIV crisis. He donned an HIV+ T-shirt to show support for TAC’s Zackie Achmat in his fight to obtain affordable treatment for Black South Africans in the public health system.
Mark Heywood, a co-founder of TAC, sees parallels in the handling of the historical HIV crisis and current Long COVID crisis: “With HIV, we started with the same levels of denial, disinterest and poor engagement by the scientific community. If it hadn’t been challenged, the course of the AIDS epidemic would’ve been very different. We had to create visibility to generate the political will to create resources. And that wouldn’t have happened if people with HIV didn’t stand up and overcome self-stigma in order to have a voice.”
This was the context in which MELCuSA decided to make giant font T-shirts to defiantly proclaim our status, and promote Sick Pride and solidarity.
Mlindeni and I set out to make our ‘invisible illness’ visible.
As World ME Day on May 12 falls in autumn here in the southern hemisphere, we chose a spring day, November 12, 2023, for the first-ever SICK Pride.
Most energy-impaired people struggle to stand up and breathe at the same time, so we can’t parade — but we can lounge in style. We invited anyone suffering from energy-limiting conditions to meet at the beautiful Arderne Gardens in Cape Town. The theme was Pajama Picnic and about 50 people joined us on that balmy Sunday afternoon. We all lay around on the lovely lawn in our favorite bed-wear being unashamedly Sick in public!
Mlindeni and I knew that for many participants, it would be the only time we left our homes that season and the effort may cost us weeks or months to recover. So we did not want it to be an occasion full of depressing speeches — rather, we made it an opportunity to revel in Sick Joy.
Beloved Cape Town singer and ancestral healer Ernestine Deane opened the event with a customised song medicine ceremony to welcome calm and connection. Dr. Uvi Naidoo from Cape Town’s Long COVID Clinic spoke about current research providing solid reasons for hope.
The event was MC’d by Mlindeni sitting down in his pajamas, and I gave my speech lying down. “Congratulations,” I said, “on surviving another year of this shitshow. I am so proud of you for enduring these relentless disabling symptoms. Most of all, I’m proud of your persistence in a world which continues to insist we don’t exist. I’m proud that you are still here, in the face of denial and disbelief and derision, while suffering a disease with zero treatment and a worse quality of life than cancer or HIV. That your despair is only periodic is a credit to you.”
“Today is a historic day,” I continued, “Because although we are sitting or lying down, we are standing up for Sick people. Today there is no shame in being Sick, only Pride and solidarity… Even though our lives have been put on Pause, let us celebrate our survival despite it all.”
There was some spontaneous singing and lots of chatting with friends both old and new. Many participants bought a SICK T-shirt to show their pride in being a member of the Society for the Inclusion of Chronic Knowledge.
Most energy-impaired people struggle to stand up and breathe at the same time, so we can’t parade — but we can lounge in style.
This year’s SICK Pride will take place on Sunday, November 17. It will be an outdoor COVID-conscious event, with masks required. The theme is Persistence is Resistance and the Sick are encouraged to share a poem, a prayer, an artwork or piece of music that has sustained them. We will also join in a tribute to Una Karlsen, a South African with Severe ME who chose to end her life in Switzerland in May 2024. Mlindeni and I are hoping that increased public awareness and invitations to local health institutions will bear fruit in terms of support for our proposed Long COVID educational workshops and mobile clinic.
In 1988, at an ACT UP rally in New York, activist and film historian Vito Russo made a speech entitled Why We Fight. He said: “You know, living with AIDS in this country is like living in the twilight zone. Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches… No one else seems to be noticing.”
If we cannot trust our governments to acknowledge inconvenient truths about climate change or genocide, we shouldn’t be surprised at them ignoring this tsunami of pandemic-precipitated mass disability. Right now, the chronically energy-impaired Sick population is at least ten times larger than the worldwide HIV population of 40 million and growing rapidly. Yet our health needs — and the threats to families, society and the global economy — are almost completely unrecognized.
We understand the pressure on ME and Long COVID organizations to be diplomatic when dealing with legislators and medical authorities. But Mild and Moderate advocates owe it to the Severely Sick, the dying, the suicidal, the disabled in war zones, and the not-yet disabled everywhere to stop asking nicely and start making demands.
It is politically vital to get creative about energy-limited protest. To mobilize effectively, we are going to need a new lexicon, a Sick manifesto, some Well allies to help us with radical stunts — and a sharper sense of urgency.
Those of us who can’t march or shout, can go and lie down in the way of the liars, like Berlin Buyers Club and LiegendDemo demonstrators did outside the Bundestag in Germany in September, and #MEAction has done in Washington outside the White House and in Edinburgh outside the Scottish Parliament. Those of us who can’t go outside can be marshaled online. In the spirit of “Nothing about us, without us”, our advocacy organizations could lead by example and poll the opinions of bedbound community members on strategic direction.
We may not have strength in our bodies, but we certainly have strength in numbers. The Sick need to start wielding that power as a voting bloc in narrow-margin elections worldwide.
We don’t have to be passive, when we are this massive.
We may not have strength in our bodies, but we certainly have strength in numbers… We don’t have to be passive, when we are this massive.
Sam Pearce lives in Cape Town, South Africa and is the author of the Daily Maverick column Dispatches from Bed. She represents the Severe on the Strategic Leadership Board of the World ME Alliance but writes in her personal capacity. Find SICK Pride on Instagram, Facebook, and Twitter/X.
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