What we’re missing out on because the world isn’t more accessible

I was out enjoying the afternoon the other day, strolling through a public park with my sister, brother, niece, and nephew. It was a beautiful day, and the gardens that filled the park presented a wealth of picturesque views and opportunities to commune with nature.

At one point on our walk, enticed by the promise of a better vantage point to view the garden, I took a detour off the main path. Doing so didn’t seem to violate any park rules. After all, while the diversion was tightly flanked by uneven vegetation, I could clearly see a marked pathway complete with steps. I also heard giggles and chatter from other park attendees just beyond my field of vision. However, as I continued along the narrow detour, I realized that the terrain had become increasingly steep and uneven.

Ultimately, I managed to press on and reached a clearing without falling on my face by scooting along some of the more rocky and steep parts with my palms, heels, and bum to the ground. Looking around, I realized I had indeed found myself at a clearing that presented a grand view.

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What I didn’t see, though, was my sister. Without realizing it, I had left her behind, moving forward along a path she couldn’t follow.

While my siblings and I all have Charcot-Marie-Tooth disease (CMT), each of us experiences it differently. These days, among the three of us, my sister has the most instability due to her limited mobility. And she’s the one who most often challenges me in conversations to recognize and remember what we lose when our communities aren’t accessible to everyone, when we leave others behind, intentionally or not.

To exemplify this, let’s consider a scenario in which we’re planning a trip while considering all the limitations a condition like CMT may impose on a body. What options do we have for travel? Airlines often seem to put accessibility on the back burner, and getting through airport security isn’t the easiest thing to do for folks with ankle-foot orthoses (AFOs) or walkers, or people experiencing fatigue. And there are too many stories of damaged wheelchairs and lost mobility devices.

And driving? Many in our community have difficulty driving. Orthotists generally don’t recommend driving with AFOs. Some CMTers require vehicles that operate with hand controls. Others may need room for wheelchairs or scooters. Such vehicles aren’t always affordable. Furthermore, there’s no guarantee of accessible parking at every destination. In a parking lot with 76-100 spaces, the Americans with Disabilities Act requires a minimum of only four accessible parking spaces. Many disabled folks find this insufficient.

So should we consider railways? In the U.S., except for a few metropolitan areas, I rarely see this as a realistic option for many destinations.

Where are we going? A museum or a park? Are the paths and trails paved? Will there be rails to hold on to? Is it a restaurant or theater? Do the doors require consistent force to open? Will the restrooms be accessible? Is the dining room tight and crowded? What will we be eating? As much as I love hot pot and Korean barbecue, I am not as confident as I once was using any utensils other than knives, forks, and spoons. I’ve been to some fancy dinner spots where food was served with odd utensils I found to be a bit unwieldy, such as beakers and tweezers.

I could go on, but ultimately, these questions have lingered in my mind recently as I consider the cumulative effect of all of these small hurdles. While many individual CMTers may find ways to overcome these hurdles through grit or personal wealth, I believe that together, these numerous hassles create a system that limits many CMTers and other members of the disability community from engaging in their community in all the ways they might want to do.

From an economic standpoint, these folks certainly represent consumers that businesses may not be able to meet. Perhaps someone with an entrepreneurial spirit will capitalize on these unmet demands. However, for me, untapped revenue streams aren’t the biggest tragedy.

I’m more saddened by the special moments that may never be shared. When I took a detour that my sister couldn’t navigate, I couldn’t share the view with her. When I’m older and my CMT symptoms progress, will I miss out on moments with my niece and nephew? Will I miss out on experiences my able-bodied friends may want to share with me?

It bothers me that we live in a world filled with missed opportunities to share with loved ones — not because of a lack of desire, but rather due to a lack of accessibility.

Note: Charcot-Marie-Tooth 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 Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.