FA’s progression is teaching me how to better advocate for myself

Accessibility looks different for everyone, columnist Sean Baumstark realizes

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by Sean Baumstark |

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I’ve always valued people’s advice, especially when I ask for it. However, nothing beats living and learning.

Due to the progressive nature of Friedreich’s ataxia (FA), I’m constantly learning. As I age and my FA symptoms worsen or become more noticeable, I’ve realized that just as I get comfortable with one limitation, a new one pops up or an old one changes and presents different challenges.

Amid the ever-changing realities of FA, my firsthand experiences provide the best and most reliable information for moving forward and working through challenges. One of the best lessons I’ve learned is the importance of asking questions, which helps me prepare for a problem or new situation. This need has been most noticeable lately during hotel stays.

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Simple questions help me keep life with FA in perspective

Advocating for my unique needs

I recently traveled to North Carolina for a commitment related to my weekly podcast, “Two Disabled Dudes.” My friend and co-host, Kyle Bryant, and I worked together there for about 24 hours. We stayed at the same hotel, and although we had different rooms, we had the same accessible floor plan and setup. We talked over dinner about the hotel and pointed out things that worked well for us. Kyle uses a wheelchair, and I use a walker, so we both need extra room for our mobility devices. However, our physical needs are much different.

As you can imagine, counter and sink height preference differs for someone seated versus someone standing. This topic made its way onto a recent podcast episode of ours where we discussed the challenges of accessibility. Our conversation highlighted how specific needs are vastly different among people with disabilities.

A couple of months ago, I attended the National Ataxia Foundation’s Annual Ataxia Conference in Las Vegas and needed a hotel for three nights. I visit Las Vegas often to spend time with my mom, but I don’t usually need a hotel, so this stay was a new adventure.

I’d reserved an accessible room online, but perhaps unsurprisingly, there were no accessible rooms available upon my arrival. I was upset and disappointed but also exhausted, and I didn’t have many options for that night. They offered me a suite for that evening to make up for it and promised to move me into an accessible room the next day. Although not ideal, I accepted the suite and resolved to skip a shower that evening, an activity of significant concern when traveling.

As I begrudgingly entered my suite, I was impressed with the room but jaded, believing it wasn’t safe for me. But to my surprise, as I scoped out the bathroom, I discovered the shower and tub were separate, and the large standup shower did have a single grab bar — just enough for my comfort and confidence! The hotel graciously allowed me to stay in that suite for the duration of my reservation.

The suite I enjoyed wouldn’t be considered accessible, but it worked beautifully for me. Although I wanted, and felt that I needed, a room designated as accessible, had I asked more specific questions about the shower, I probably could’ve avoided the emotional and stressful heights I climbed to during the brief check-in process.

Asking the questions that matter most to me and my situation seems the best form of advocacy. Unfortunately, what’s considered accessible by one party may not be the best environment for me. Sure, I can always wait and see, or I can get better at asking the right questions to inform my decisions.

I realize you may not be reading this for advice, but I’m offering this: Don’t be afraid to advocate for yourself by asking questions about your specific needs.

Note: Friedreich’s Ataxia 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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