I’ve never known life without Spinal Muscular Atrophy Type II. This neuromuscular disorder progressively weakens muscles over time, stripping me of what little independence I had. Normal day-to-day activities like feeding myself, writing my name, or even using my phone have been lost to me over the years. Since receiving an official diagnosis when I was 13 months old, my family and I have discovered and created inclusive methods for me to survive and thrive in a painfully ableist world.
Growing up with a physical disability meant I had to find accessible and entertaining alternatives to the usual activities that most children enjoy. Since I lacked the capability to climb, run, or play any sport, my physical therapist at the time introduced my parents to a form of exercise that would not only strengthen my hands, but also allow me to connect with my peers: playing video games.
Needing to constantly move my fingers and hold somewhat heavy controllers in my tiny disabled hands let me practice my dexterity and keep my muscles moving — a critical aspect of living with a progressive disease.
My first foray into the world of games began on my Super Nintendo. As a young child, the size of the controller was perfect for me and my limited reach. I could press every button, perform every action, and stretch my muscles while tricking myself into thinking I was just playing video games. Earthbound, Teenage Mutant Ninja Turtles: Turtles in Time, and a bevy of platformers like Donkey Kong Country 3: Dixie Kong’s Double Trouble! kept me entertained for hours. As games and their subsequent systems evolved, so did my disability.
The decrease of muscle mass and strength with SMA Type II is gradual, at least in my experience. There were never singular moments or events that precipitated an immense loss of movement, but rather small, often minuscule realizations of my limitations. While video games let me exercise, they also acted as a tangible way for me to track my disease’s progression.
My first inaccessible gaming venture occurred when playing Super Smash Bros. on my Nintendo 64. While my brother and his friends were sprinting and smashing (two integral mechanics to any Smash game), I was stuck performing basic attacks. At first, I thought it was due to a faulty controller, but after trading with my brother and noticing the same results, I had to adapt. I switched to using a character like Samus, who could knock out opponents with powerful standard moves. Even though an event like this was relatively minor, it helped me come to terms with needing accommodations.
When we upgraded to the GameCube, the control sticks were significantly easier to operate. I gained the ability to sprint, but still struggled to smash my enemies. Thankfully, Super Smash Bros. Melee lets players smash with the C-stick, a feature that allowed me to experience my favorite characters in a new light. Yet, despite the new accessibility accommodations, the GameCube controller posed a new problem that not only demonstrated my declining physical state but also shaped how I play games today.
With systems like the Super Nintendo and Nintendo 64, the overall weight and size of the controllers let me easily grasp and reach every button. The GameCube controller, while comfortable in my lap, was too large for me to properly reach L, R, and Z — three buttons which are crucial for numerous games. For the first time in my life, I required outside assistance to perform tasks and finish levels. Transforming into various paper objects as Mario in Paper Mario: The Thousand-Year Door, wielding Leon’s knife and executing quick-timed-events in Resident Evil 4, or scanning objects and locking onto enemies in the first two Metroid Primes were only achievable because my brother and mother were there to press the appropriate buttons.
This problem wasn’t unique to the GameCube. While playing games on the PlayStation 2, I was unable to reach and press the bumpers. As such, my library for both consoles consisted of games that primarily used the face buttons for major actions. Although relatively minor at first, these issues would eventually culminate into me accepting and understanding my increasing limitations, as well as adopting equipment and methods that forced me to confront my physical disability.
Throughout my teenage years, the progressive nature of my disability removed my capability to feed myself, write with a pen or pencil, and just generally grasp things. This especially extended to gaming, where I could no longer comfortably hold controllers for extensive play sessions. As a result, I began using the back of pieces of furniture to prop up my controller. While perfect as a stabilizer, the awkward angle further limited my reach. While this was particularly evident when my brother and I purchased an Xbox 360, I completely lost access to the upper right side of most controllers.
Since most games during that era made triggers a necessity, my brother used his ingenuity to tape a popsicle stick to the left side of a controller, causing the stick to lay comfortably over the right trigger. For the first time in my life, I regained control over something I thought my disability took from me. A few strips of electric tape and a single popsicle stick let me comfortably game and even purchase previously inaccessible titles. For years, I played with little difficulty, only needing assistance for actions like clicking the control sticks. Because of this simple tool, I became an amateur achievement hunter, made lifelong friends, and regained some semblance of independence.
Unfortunately, the next generation of consoles created new barriers that crafts could not fix. When I purchased a PlayStation 4, my mother and I tried to recreate the popsicle stick contraption. However, due to the ergonomics and shape of the controller, the stick was unable to properly lie upon the necessary buttons and triggers. Even though the system enabled players to completely customize controls, losing access to four buttons severely limited what games I could play. This sparked the catalyst for me needing a truly accessible controller — one that would need to be developed and customized for my specific needs.
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Companies like Evil Controllers design accessible controllers for a plethora of physical disabilities. While pricey, a device which placed the triggers and bumpers onto the front of the controller was exactly what I needed. For the first time in my life, I needed outside assistance to properly game. And because of SMA Type II, it would not be the last. Last year, I completely lost the capability to even hold a controller.
As such, I’ve been using the Xbox Adaptive Controller and its varying peripherals to play console games. With it, I’m no longer confined to a fixed position like previous controllers. And, if a button is too difficult to press, whether due to limited strength or awkward placement, the companion Logitech Adaptive Gaming Kit provides several switches of varying size and strength input that I can put wherever I please. It’s a device that I never wanted to need, but am eternally grateful that it exists. However, it can be incredibly expensive for the full set of switches and joysticks, with my current setup costing roughly $350.
While I’m currently taking a new drug which will hopefully restore some of my lost strength, there’s no guarantee I will ever play the same way again. Living with a progressive disability means there are no certainties. But as long as accessibility initiatives continue to evolve, I can continue to enjoy my favorite medium.