Reflecting on Accessibility, Ableism, and Chronic Illness During Pride Month
Pride Month, observed each June, is a time to celebrate LGBTQ history, community, and life through events and parades. Curiously enough, I marched in my first Pride parade years before I had the courage to come out and live authentically. While I think about that experience in San Francisco often, for many reasons, I’ve only attended a few Pride events since I was diagnosed with pulmonary hypertension.
Pride can be wonderful for many people in the LGBTQ community; however, that is not always the case for queer people who are disabled or chronically ill. Pride events, including parades, are not always accessible or inclusive, creating barriers to full participation for people who also wish to celebrate this month. Whether the activity is walking in a parade, observing as a spectator, or joining the fun at a party or other celebration, these all happen in venues that can be inaccessible.
Making Pride more inclusive of those of us with disabilities and chronic illnesses begins at the planning phase. Organizers should think about parade routes, parking, seating options, and amplified sound through the lens of how to make the event accessible to all.
For me and others living with PH, hot weather can trigger or worsen symptoms, and June is when the summer heat starts to turn up. It is harder for me to breathe if I’m outdoors when the thermometer reads 90 F. If I wanted to attend a Pride parade or event, I would consider what accommodations are being provided to help prevent heat exhaustion. Supplying things like shaded seating that’s easily accessible, fans, and bottled water would help me decide whether or not to participate.
Last year, we all had to make adjustments to allow for quarantining and social distancing protocols to limit exposure to COVID-19. Work, school, family reunions, holiday dinners, and many other events took place virtually instead of in person. This dynamic forced many businesses and event organizers — everyone from restaurant and bookstore owners, to local bands playing to their fans from their living rooms, to those organizing Pride activities — to get creative to engage their audiences.
One positive thing to emerge from the pandemic is the recognition that we can make events accessible by going virtual, and they will be just as engaging and successful. Virtual events also give people options for how they choose to participate. It doesn’t have to be just parades and crowded, in-person events.
Still, accessibility doesn’t always mean inclusivity. When Pride messages herald themes of diversity and acceptance of differences, I often question my place within the community because of my own issues with body image and experiences with internal and external ableism.
A portable oxygen concentrator is a mobility device I use as part of my treatment plan to improve my quality of life with PH. If I want to participate in a march, I bring it. I have worn my oxygen concentrator to climate and advocacy marches before. But I couldn’t picture myself wearing it to march in a Pride parade because of complicated feelings related to body positivity and not conforming to mainstream standards in the LGBTQ community.
Two years after my diagnosis, I attended a Pride event to listen to a presentation on healthcare data for older queer Americans. I spoke up during the Q&A session to inquire about care for older members of the LGBTQ community who are disabled or chronically ill. This spectrum of our community often gets lost, or considered as an afterthought, and the presentation was mostly silent on disability until I gave voice to that absence.
I think about life expectancy and pulmonary hypertension a lot. With a mix of hope and trepidation, I look ahead to growing old with my partner. I also worry about the kind of ableism and prejudice we could face should my PH become more severe down the road and we need to make some tough decisions about my healthcare.
There is renewed energy about Pride this year as vaccines bring about the return of in-person celebrations. As people find ways to resume familiar activities, I am encouraged to see organizers continue to host virtual as well as in-person events. This should become the norm in the years to come.
This year, I’m reflecting on Pride, its connections to the rare disease and chronic illness community, the importance of inclusivity, and the acceptance of myself and others. Whether or not I feel comfortable with accommodations at a parade should be the floor and not the ceiling when it comes to inclusivity. Catch me at a virtual book event celebrating Pride in a style that works for me!
Follow Mike Naple on Twitter: @mnaple.
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.
I was born during WW2 with a severe heart condition. My mother taught me to focus on the things I can do and not on the things I can't do. I was diagnosed with PAH thirteen years ago, and I have followed the same ideas my mother gave me. So I've made it to 76 years of age and still kicking. So (1) have a positive attitude about your illness, (2) know your limits and reach them every day, and (3) celebrate every morning you wake up and every birthday each year.