In an inaccessible world, sometimes you can’t make lemonade

When life gives you lemons, you make lemonade, or so they say. That metaphor doesn’t work quite as well for me, though, because I don’t like lemonade. Still, I agree with the sentiment and try to make the best of things whenever I can.

But sometimes you just can’t stomach it. Maybe it’s still too sour, or maybe they added too much sugar to offset it, and now it’s too sweet. Either way, you can’t drink it, and your face just contorts into an uncomfortable pucker.

Illness and disability can feel like that sometimes.

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When the lemonade is unpalatable

Just last week, I had to miss two New York Liberty games and a Bryan Adams concert. For the first game and the concert, I stayed home because I wasn’t feeling well. It was frustrating and disappointing, but it’s the lemon I was given. The best lemonade I can squeeze from that is the hope that there will be other games and concerts to attend. It’s still a pretty bitter sip, though.

But the last game was different. I’m not just disappointed. I’m angry.

This wasn’t just a regular home game. It was a Liberty Loyals (season ticket members) road trip to an away game against the Connecticut Sun. I have a dear friend in Connecticut whose birthday is this month, and attending the game together would have been a fun way to celebrate.

Alas, it’s never that simple. Because I live with sarcoidosis, I get severely fatigued and short of breath easily, and rheumatoid arthritis and fibromyalgia add severe pain in my joints and muscles. As a result, I’m not always able to walk very far or go up a flight of stairs. Sometimes I can manage it, but since I never know whether it’ll be a walkable day or not, I have to plan for disability.

With a mobility scooter, it’s easier to get around and enjoy stadium events. My season tickets are for wheelchair and companion seats, and I turned a Liberty pillow into a seatback cover so even my scooter can dress for the game. As soon as I got the email about this event, I looked into accommodations.

The group ticket page didn’t include seat selection, but I was assured that they could accommodate accessible seating, so I purchased my tickets.

However, as the date approached, I learned that the group tickets were in the last few rows of an upper-deck section of the arena. I had purchased four tickets, but the best lemonade available was two accessible seats on the main level and two seats higher up, with the group. While lower-level seats for upper-level prices might seem sweet, when they’re an entire level away from my friends, that’s still unpalatable.

I considered other options: Perhaps I could scoot to the group section, and my husband could store my mobility aid at guest services. No luck: Even the closest seats were still too high for me to climb. This close to game day, all other accessible seats were sold out. All we could do was cancel and get a refund.

That’s not the first time a lack of accessibility kept me out of “the room where it happens,” and it surely won’t be the last. Many older venues built before the Americans with Disabilities Act (ADA) was passed in 1990 are simply not accessible to people with mobility challenges (not to mention vision or hearing impairments, neurodivergence, and other disabilities). Festivals on unpaved fairgrounds aren’t easy to navigate, and if it rains, we can get completely stuck in the mud.

Even sites that are up to code can easily go off track with mechanical failures or scheduled repairs. Coincidentally, a year ago, I wrote about my anger over missing another Liberty game. Back then, it wasn’t because I was too sick or due to a lack of ADA-compliant seating. In that instance, my elevator was out of order, so I was stuck at home.

This time around, my lemonade is advocacy. I took the opportunity to ask a manager to look into accessibility for all future Liberty Loyal events, as I am surely not the only disabled fan who wishes to attend. Until then, I think I’d rather have iced tea … or, better yet, coffee.

“Disability isn’t the problem. Inaccessibility is.” — Serjio Brereda

Note: Sarcoidosis 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.