5 Tips for People New to Disability Advocacy

Millions of people becoming disabled due to COVID-19 has created a potential opportunity: a chance to break down negative stereotypes, include various groups of people in one discussion, change the narrative about who disabled people are and what we truly need. Yet, the more long COVID becomes widely known to the public, the more efforts to minimize it will also increase. We must prepare ourselves to continue an already long advocacy journey, without any quick reward. How can we do this?

1. Stay humble. ​​

People have been at this long before us: people with myalgic encephalomyelitis, dysautonomia, mast cell activation syndrome, connective tissue and autoimmune diseases triggered by other infections or circumstances. Just because we might not have known that a virus could leave physical damage to a body in its wake doesn’t mean it never happened before. While we were jogging or lying on the beach or having brunch or putting our children to bed, others already knew. They were on the couch in pain, knowing, or waking up with the same minuscule amount of energy each morning, knowing. They experienced the same holes in the healthcare system, the same gaslighting by medical professionals, the same profound struggle to obtain financial assistance or social support services. And they did it largely on their own, without millions of others experiencing it at the same time or it being frequently covered by the media.

Your story is very important, but so is theirs. Elevate their stories along with yours. If you speak to the press, include information about general disability awareness or disability justice. If you speak to a friend, mention that the disability community warned of mass influx of chronic illness at the beginning of the pandemic, though few listened.

Have gratitude for what the chronic illness community did before you came along— for the research in which they participated, for the risks they took, for their advocacy and determination, making it easier for you now. Do not lecture them about what they already know. Empathize with their grief and anger, understanding that some have endured significant neglect at the hands of society. Allow them to speak their truth with grace. Don’t be defensive; try to listen and learn.

2. Acknowledge truth. ​

Accepting truth can be a form of loving yourself. You are sick. It might be temporary, or it might be permanent, but it’s not your fault. Release guilt or shame if you are feeling it. Your body works the same as other people who got sick and did not get better. You are human just like other people. Perhaps this means giving yourself permission to truly listen to your body, to say no to others more, to rest more, to allow yourself to have what you need.

When you’re ready, speak the truth out loud. If you are newly diagnosed with ME/CFS or POTS after COVID, say it. If you have post exertional malaise and are angry that doctors or researchers don’t know what it is, tell them about PEM. This is how we ally with each other. Long COVID could be a welcome moment to set a new precedent for chronic illness care, potentially stimulating research, funding, and treatment for all disregarded syndromes that commonly affect women and marginalized groups or are overlooked for being “too complex.” We can make this possible by highlighting commonalities, showing up, and centering truth.

3. Listen to the wisdom of the disability community.

The disability community has noted the importance of recognizing ableism’s role in the pandemic, and has encouraged new advocates with long COVID to learn about ableism. It’s standard not to see ableism easily. You were probably ableist before you got sick, even if you respected people with disabilities, and you’re probably still a bit ableist even after identifying as chronically ill or disabled. It’s inherent in our culture, a continuous challenge.

Acknowledge the overlaps of poverty, racism, misogyny, anti-fatness, homophobia and transphobia that affect people in the disability community and inform their decisions. If you are capable, spend some time learning about disability history and disability justice. Learn about mutual aid, accessibility, universal design, the stigmas of invisible illness and mental illness, neurodivergence, the ADA and other disability laws, eugenics, historically problematic tropes of disability, etc.

Listen to the realities of people in the community: housing insecurity, being financially forced to work despite illness, caring for children or family members through severe symptoms, lack of access to healthcare or medications. While we push for research funding and treatment, we cannot ignore immediate needs or leave people behind.

Disability does not need to be the main focus of your life, but for now and perhaps forever, it is a major part of who you are. Consider how you might use it to find new meaning or connections.

4. Let go of what you need to.

Disability will likely radicalize you in some way, and often there is no going back. Let go of expectations about the world working the way that you thought it did, or the way you wanted it to. Let go of social pressures to have the perfect life or career or body, the exact future you thought you were going to have that no longer seems possible. You might have to make a new one. You might not have a choice.

Let go of seeing yourself through other people’s eyes and see yourself through your own. Get rid of the toxic people in your life. Trust your own experiences, your own judgment about the body you live in each day. Have hope when appropriate, but understand that the people who truly care about you will accommodate your needs and validate your new reality, not deny it. Embrace the places and circumstances that feel rejuvenating, not draining. Only you can decide.

5. Find solidarity.

Find people to connect with who share common priorities and goals. Not every medical organization has your best interest in mind, just as not every support group promotes high quality information. Be selective about which to trust. Look for a generally positive but realistic environment with people who share your values, one that is inclusive, intersectional and provides helpful resources while comprehending broader collaborative needs.

Get involved in advocacy, research, volunteering, and community activities as able. Don’t assume you don’t have any special talents or unique abilities to bring– everyone can contribute something. Start small and stay small if you need to. Ask for help if necessary.

Feel whatever emotions solidarity prompts in you, be it grieving, embracing solitude, channeling rage or sadness into creativity, finding acceptance, learning to love your new community, realizing small joys. It’s an imperfect process, but others are here for you, with you. You matter.

Keep hanging on. We need you.