What does accessibility mean for someone with hypopara?

Hypoparathyroidism makes me rethink accessibility. Sometimes accessibility means having a livestream option for an event when travel is impossible. Sometimes it means having a temperature-controlled climate, because sweating can lower my calcium level. And sometimes it means having a seat at a standing-room-only show.

With my hypopara, standing for long periods of time causes symptoms that include joint and muscle pain, spasms, nausea, tachycardia, fatigue, and leg weakness. To relieve the burden of standing, I use a rollator/wheelchair mobility aid, which I’ve named Roxy. However, Roxy is only one piece of the accessibility puzzle when I go to an event like a concert.

The problem with smaller concert venues here in Detroit — and across the country — is that loopholes allow them to avoid complying with the Americans with Disabilities Act (ADA). Historical buildings aren’t required to have ramps, elevators, or accessible bathrooms. In some instances, an inaccessible venue will provide alternative options.

When my friends’ band came through town on a milestone tour, I was determined to find a way to be there to celebrate with them. My group had two people who used mobility aids — me and my friend who uses a standard wheelchair. The venue was in the basement of an old church, and the entrance was a narrow set of stairs. We arranged with the staff to have my friend carried down in her chair, and I navigated down using my cane.

Recommended Reading

March 13, 2025 News by Marisa Wexler, MS

Hypoparathyroidism treatment MBX 2109 trial enrolled

Heather Novak, masked, sits in her wheelchair between her friends at the front of the stage. (Courtesy of Nicole Alef/Moonrise Photography)

There are pros and cons to every venue regarding accessibility. The biggest pro of this venue was the barrier-protected ADA section in front of the stage. Too many times, I’ve been shoved in the back of a venue, only to see belt loops and sweaty backs at my eye level. The gates helped prevent inebriated concertgoers from trying to climb over our chairs or sit on our laps — something that happens surprisingly often.

The cons included an inaccessible bathroom, with a doorway too small for a wheelchair to pass through, and security who didn’t stop able-bodied concertgoers from cutting through the accessible section to get to the bar, often stumbling over our chairs.

I’ve learned to always call the venue before I purchase tickets so I know what to expect. To prevent miscommunication, I ask a series of specific questions, more than “Is the venue accessible?” My questions include: How wide are the entrance and the bathroom doorway in inches? Are there any steps leading into the venue or bathroom? Is there a bathroom stall that has safety bars? Where do people with wheelchairs sit?

Unfortunately, I’ve learned I need to ask one more important question: In reality, how much vape or marijuana smoke can I expect during a show? Smoking — including secondhand smoke — can lead to reduced serum calcium levels and calcium absorption, and cause cardiac concerns. With both a smoke allergy and hypopara, I am at higher risk for bronchospasm and wheezing.

While smoking indoors in public places is illegal in Michigan, some venues don’t do much to stop it from happening. Venues with high ceilings and good ventilation are significantly less of a problem than basement rooms with low ceilings. During the show, there was a suffocating amount of vape smoke — a level I hadn’t witnessed since indoor smoking was banned. Security shrugged and told us there was nothing they could do.

I was faced with an unfair decision: Do I interrupt the show by having security move me and my party from the front row to the exit? Or do I suffer through and hope I don’t get sick? Ultimately, I decided to suffer through, but only because it was for people I loved. Even with a mask and a battery-powered handheld fan, I was still sick for several days after, which was a frustrating end to a wonderful celebration.

Every venue is different, every group of security guards is different, and every experience is different. I will see my friends again when they come back later this year — at a new venue — and I hope to have a better experience. It’s exhausting to not only worry about my hypopara and the effect a night out can have on my body, but also my safety from smoke, drunken strangers, and uninformed staff.

When trying not to let my hypopara prevent me from doing things I love, sometimes I’m faced with the reality that it isn’t really my hypopara that’s stopping me, but the inaccessibility of the world around me.

Note: Hypoparathyroidism 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.