Photo courtesy Joe Frost
Day 14 of 31
This is Joe Frost’s story:
Living with a disability resembles a game of madness due to the lack of access to resources, services, and websites.
With all the challenges, however, there are some advantages. My brother Jake, who like me also has SMA type 3, used the expression “Disability Perks” for the fleeting moments when society shook hands with us – as if we were part of an ironically exclusive club.
I could tell when Jake and I were getting tickets to a sold out event as accessible seats were reserved until needed. I could tell how long my brother Ethan and I stood at the head of a three-hour line at the Louvre and got on for free (although it took months of planning and numerous phone calls to find accessible flights to Paris and hotels, and ended up costing more than non-accessible Accommodations).
I could also talk about the time Ethan and I sat on the EuroStar train for the price of standard first class seats, including a free three-course meal. The irony of this story came when the train crew offered us extra wine and it wasn’t until late that I found out that I couldn’t reach the toilet in the front of the car (no way for wheelchairs). When we arrived at Gare Du Nord in Paris, we found that the toilets were on the ground floor and all elevators were closed and fenced (we arrived after 9pm).
Although living with a disability is challenging, I take pride in my disability and fight to make things more accessible to everyone.
My brother Jake and I overcame these challenges together, with support from friends, family and colleagues. I now work in IT as a senior developer, sit on a municipal disability rights commission and even worked in a video game studio for six months. Jake now serves as a judge in Wisconsin and has served on several accessibility advisory boards.
So I encourage you to take up the challenge!
Play life in expert mode!
Perceive your disability!
And let’s work together to make the game playable for everyone.
SMA News Today’s 31 Days of SMA campaign publishes one story per day for SMA Awareness Month in August. follow us on Facebook and Instagram For more stories like this, use the hashtag # 31DaysofSMA or read the complete series.