Joining the Frontlines of Advocacy
When I became infected on the job with COVID-19, I could not have imagined the journey ahead of me. Within a few weeks my active life as a mid-30s, healthcare worker in one of the largest acute care hospitals in Canada morphed into a frightening portrayal of chronic illness and disability. I could no longer work, participate in social activities, help with household chores, or shower without a seat. An emerging myriad of symptoms pointed to the multi-systemic nature of Long COVID and the link to Myalgic Encephalomyelitis (ME/CFS). Almost a year later little has changed. I remain mostly unable to return to activities outside of my home and have not successfully returned to work. Like so many others worldwide, this illness upended my life overnight. But while working as a Physiotherapist on the frontlines ended abruptly in Long COVID, I’ve been discovering a new call. I now find myself joining the frontlines of chronic illness and disability advocacy.
For the most part, I’m new. I’m new to the lived experience. I’m new to this side of the fight. I’m new to advocacy. I spent my career advocating from within problematic systems, so I’m not exactly shocked by the experiences of chronic illness communities and long-haulers. The system takes care of the system - I knew this before living with Long COVID. Yet, I have much to learn about responsible and effective advocacy. I’ve been soaking up all that I can by keeping my finger on the pulse of communities historically disbelieved and marginalized; learning from peers and mentors; and trying my best to join in and support the fight. Like many Long COVID advocates taking up the torch, I can hardly call myself an expert, but here are a few things I’ve learned so far.
1. It’s a Marathon – Not a Sprint
The work is hard. It is triggering and slower than we need it to be. Systemic barriers in big systems, like healthcare and government, make it difficult to create needed change. Medical paternalism and top-down hierarchies of power add to the challenge. Common barriers to change include: racism and white supremacy; misogyny and patriarchy; ableism; anti-LGBTQ2S+; and toxic medical and workplace cultures. These things are baked in, so turning the giant ships of our systems requires commitment, perseverance, and teamwork. Advocates have been working for years upon years already. It can be discouraging to know that we still have so far to go, but it’s useful to frame things realistically. This is the long game. I need endurance in this fight, so I’m learning to establish a personal framework for how to spend my energy. Setting boundaries, being selective, and knowing my limits are part of the longevity equation. Balancing advocacy involvement with my needs and limits means tuning in to what gives life and what I have capacity for. The importance of “No” cannot be overstated, either. This can look like declining opportunities that don’t fit my abilities, values or priorities; declining unsafe medical assessments; opting out of triggering meetings or groups; or declining positions that tokenize, instead of center, the lived experience. “No” can even invite opportunity to explain why something misses the mark. Being selective is important for my personal well-being, but also for the whole of the movement, because I cannot do it all as one person. I am not the most qualified or most representative in any space. I cannot fix everything and it’s not my responsibility or right to do so. It’s unwise to go it alone. Needless to say, community with others is essential.
2. Center the Marginalized. Know the Cause.
Advocacy is not about my individual story. It cannot be exclusive to Long COVID, people who look like me, or people with a similar experience to mine. This is bigger than me and my limited and privileged understanding. To be an effective advocate is to carry a responsibility to keep informed and to have memory and knowledge of history. An example in our Long COVID context is to look to those living with Myalgic Encephalomyelitis (ME). Post-infectious illness and ME communities have kept long-haulers from harm by sharing pacing techniques, illness management tips, and advice on advocacy strategies. They saw Long COVID coming before anyone else. People with ME are also among those historically dismissed and psychologised by a discriminatory medical establishment. This includes those with Severe and Very Severe ME. I cannot represent these experiences, but I hope that by relationship and with permission I can learn to make space. Advocating responsibly and effectively means learning these stories and learning how to dismantle harmful systems. It means committing to more than learning new things, but also to unlearning. My journey includes unlearning internalized ableism, sexism, and the ways we’ve been taught and shaped in whiteness. Despite being told “there are no road maps”, I know the better way is with Indigenous and Black women, Disabled women, and LGBTQ2S+ at the helm. I will always be learning how to empathize by listening to these voices. Responsible advocacy centers the most marginalized.
3. I Can Make Change
Advocacy opportunities aren’t only in the big things and big moments, like a social media platform, a media interview, shaping policy and resources, or designing research. Opportunities are present in less formal moments, too. Advocacy work exists in casual conversation, medical appointments, and working group meetings. I can create change when I share what I’ve learned, how I’ve changed my thinking, and when I support someone else to do the same. These things count. Systemic problems need more than individual actions, but collectively we can make change. The point is to see the opportunities and act on them if I’m able. Micro-advocacy matters.
4. Time to Get Awkward
As someone who has always wanted to be liked but also speaks up to toxic power, awkwardness becomes me. I’m not comfortable with making waves, being misunderstood, or ruffling feathers. In recent years I’ve pushed back on oppressive ideas of what is acceptable behaviour for women. I’ve been doing away with the internalized sexism that says I should be quiet, pleasant, and soft. The thing is: disruption isn’t pleasant. Disrupting the status quo and making good waves is necessary work. I’m learning to accept that standing up and speaking out means being met with resistance – and that doesn’t mean I’m doing it wrong. I’m learning that conflict and opposition are ok. Feeling misunderstood doesn’t mean I’m not making a difference. I’ve decided that I’m not aiming for status quo niceness – I’m aiming for kindness. To me, kindness means making the world a better place. Kindness means necessary disruption in the name of justice and a better world for everyone. Kindness is calling out in the interest of calling up. I’m done with the pressure to make our stories comfortable, palatable, and with a positive spin. I’m done with maintaining the comfort of those in power. Bring on the awkward.
This is a new frontline for me, but it’s existed since long before now. I often imagine a well-worn path that’s been forged by those before me. I now walk this path with the knowledge that others will follow. This image accompanies me into every meeting as a reminder that I am not alone. I have a responsibility beyond myself and to represent the benefit of the labour of others. I also carry privilege that opens doors and gives me a seat at the table. As a white, cis- female who is newly disabled, my individual experience cannot be construed to represent the norm. The work is to dismantle harmful systems and support the creation of new and better for all. Let the learning and growing continue.
Alyssa Erin is a Physiotherapist living with Long COVID in Canada. This image was taken before contracting COVID-19.
