How those with physical limitations can get involved in activism

Leading up to my heart and lung transplant in 2018, a friend asked if there were any specific activities I was looking forward to doing post-transplant. The hope was that my health would improve following the procedure. One of my very confident answers was that I was excited to begin engaging in marches and political activism.

As a woman who’s lived with rare and chronic illnesses, it’s probably not surprising that I’ve developed an interest in various aspects of political policy. That became more meaningful toward the end of my time with pulmonary hypertension (PH), when I was in college and starting to form my beliefs.

Unfortunately, my day-to-day life with PH made any physical activism difficult. My mobility was limited by poor heart and lung function, and I had little energy to spare. For this reason, I looked forward to a day when my body would give me the fortitude to speak out about policies and rights that I was passionate about. The idea of marching on a street with a sign in my hand was appealing and felt like a small way for me to take control of my circumstances.

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Now, living as a transplant recipient with other complex issues, I have similar physical limitations as before. In addition, my immune system is incredibly vulnerable, and after several close calls, the risk of illness is no longer worth the exposure to large crowds.

This limitation is another restriction in my life that causes a bit of grief. Still, I’ve learned over time that there are other ways to take charge of advocacy, away from crowds and safe at home.

Ways to get involved

Contacting representatives: Getting in touch with local reps is what people often recommend, but not everyone takes advantage of this option. The point of a democracy is for the people to have a voice, so I try to remember to use mine.

By calling and emailing my representatives, I can put forth my specific views about policies and bills affecting me. People will often circulate specific instructions and scripts via social media for larger issues, making the process extremely straightforward. This guidance is a wonderful tool for people like me who can get anxious with conversational tasks.

Taking to social media: Speaking of social media, it’s a powerful tool for engaging in activism. Just the other day, I posted a video regarding the inevitable underrepresentation of the disabled community at protests and rallies because of our physical limitations. Creating content like that helps me find my voice and brings people into my comments who offer so much community and positive conversation regarding the issues I’m passionate about. Virtual community is a wonderful modern development that can go a long way in helping me remember that no one is alone.

Engaging in conversation with local community: Finally, speaking with those around me is the simplest way to be politically active. Holding conversations with my friends, loved ones, and local community allows me to share my perspective with others as a disabled woman while also receiving education from different perspectives. At the end of the day, we all belong to one country, and nothing can replace the impact of sharing our stories and needs with one another.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.