31 Days of SMA: Playing the Game of Life with a Disability

Photo courtesy of Joe Frost

Day 14 of 31

This is Joe Frost’s story:

Life with a disability is much akin to playing a game on insane mode, due to the lack of access to resources, services, and sites.

Yet, for all the challenges, there are a few benefits. My brother Jake, who, like me, also has SMA type 3, termed the phrase “Disability Perks” for the fleeting moments when society gave us a hand-up — as if we belonged to an ironically exclusive club.

I could tell about the time Jake and I got tickets to a sold-out event, due to accessible seats being reserved until they’re needed. I could tell about the time my brother Ethan and I got to cut to the front of a three-hour line at the Louvre, and got in for free (though finding accessible flights to Paris and hotels took months of planning and numerous phone calls, and ended up costing more than non-accessible accommodations).

I could also talk about the time Ethan and I got to sit in first class on the EuroStar train for the cost of standard seats, including a complimentary three-course meal. The irony of that story came when the train staff offered us additional wine, and only too late did I learn that I couldn’t get to the restroom at the front of the car (no path for wheelchairs). Upon arriving at Gare Du Nord in Paris, we found that the restrooms were downstairs, and all the elevators were closed off and gated (we arrived after 9 p.m.).

Although living with a disability is challenging, I take a certain pride in my disability and fight to make things more accessible for all.

My brother Jake and I have faced these challenges together, with support from friends, family, and peers. I now work in IT as a lead developer, sit on a city disability rights commission, and even had a six-month stint at a video game studio. Jake now serves as a Wisconsin judge, and has been on several accessibility advocacy boards.

So, I encourage you to take the challenge!

Play life on expert mode!

Embrace your disability!

And let’s work together to make the game playable for all.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.