Turning 40 means more than a midlife crisis to Steve Spohn.
The Bethel Park resident was diagnosed with spinal muscular atrophy, a terminal illness, when he was barely a year old. The disease basically stops the production of a protein that’s important for muscle development and means Mr. Spohn will use a wheelchair for most of his life.
His mother was originally told, following his diagnosis, that he only had a few months to live.
But that’s not what happened.
Mr. Spohn is not only alive, but he has become an important fixture in video game culture as the chief operating officer of AbleGamers, a nonprofit with a mission to combat social isolation and improve the quality of life for individuals with disabilities through making video games accessible for all.
As his 40th birthday drew near, Mr. Spohn pondered how he could commemorate an occasion this improbable. On Sept. 15, 2020, he issued a challenge to the AbleGamers community with a lofty goal: In honor of his 40th birthday, he hoped to raise $1 million for AbleGamers. Mr. Spohn drove home how serious he was about this endeavor with an impassioned monologue in a video he put out March 18 on AbleGamers’ YouTube account.
Mr. Spohn’s words clearly struck a chord, and his campaign officially crossed the $1 million donation line on Aug. 15. As of early afternoon on Sept. 2, he has raised $1,020,053.98 and counting. Anyone can still contribute at https://tiltify.com/ablegamers-charity/spawn-together. His efforts have proven so fruitful that he plans to keep this going as an annual event for AbleGamers.
“I can’t imagine a better way to have spent my 40th [birthday],” Mr. Spohn told the Post-Gazette. “I think that we are put here on Earth for a very limited time. You have to do as much good as you can and fix as much that’s wrong ... where you can. I’ve done my damnedest to make sure I’ve helped as hard as I could so that on my last day, I’ve tried.”
AbleGamers is based out of Kearneysville, W.Va., and was founded in 2004 by Mark Barlet, a 47-year-old service-disabled Air Force veteran whose lower-extremity injuries mostly don’t affect his ability to play video games. However, when multiple sclerosis took away one of his best friend’s ability to game, the longtime software engineer started a community website to discuss how difficult it was for many individuals with disabilities to enjoy something that brings joy to so many folks worldwide.
One day, Mr. Barlet, who is now AbleGamers’ executive director, wrote an article complaining that playing “World of Warcraft” was not an option for people with disabilities. Mr. Spohn sent Mr. Barlet an email disputing that assertion, to which Mr. Barlet welcomed this random responder to write his own story. Three days later, Mr. Spohn obliged. And soon after, he officially became a part of AbleGamers, which transitioned from a glorified blog to a nonprofit in 2009.
“He joined me, and we changed the world,” said Mr. Barlet, who described Mr. Spohn as “tireless” and “an incredibly intelligent individual.”
He said that Mr. Spohn “was his own worst enemy all through this” with his constant worrying about having potentially set the bar too high, especially when he expressed unwarranted concern after raising about $300,000 in the campaign’s first few weeks that interest would quickly wane.
Mr. Spohn acknowledged that he at first believed he would be lucky to bring in $200,000, but he’s certainly not arguing with how things played out.
“Part of the crux of my personality is that I’m a very sarcastic and confident person, so people think I’m confident in everything I do,” he said. “The truth is no matter how hard you swing for the fences, there’s no guarantee you’re going to hit it. But I knew at least we’d hit something ... and I’m honored we were able to get this far.”
The money will be invested back into AbleGamers, allowing it to stock up on valuable resources such as an updated IT infrastructure, hire new professionals to help further the charity’s efforts to increase video game accessibility and, as Mr. Barlet put it, aid AbleGamers in “building the capacity to do more good.”
Both Mr. Spohn and Mr. Barlet mentioned that the COVID-19 pandemic has made AbleGamers’ purpose even more pressing. For people such as Mr. Spohn, whose primary source of social interaction has been online since high school, he’s not surprised that “video games are part of what’s keeping people sane during the pandemic.”
“Everyone understands what social isolation is now that we’ve gone through COVID-19,” Mr. Barlet said. “For so many people with disabilities, 2020 into 2021 looked exactly the same as 2016 and 2017. Social isolation is an epidemic for people with disabilities. ... AbleGamers is tirelessly working in ways that you can see and behind the scenes to make sure that when you download the next greatest hit, you can enjoy it.”
That’s why Mr. Spohn is so passionate about making sure anyone who wants to play video games can and why he’s so appreciative of anyone who donated any amount of money to his campaign. For a 40-year-old with limited mobility who used to be bested by the single stair at Club Zoo, raising north of $1 million is proof to him “that people believed in my story and AbleGamers’ story.”
It’s also important to him that his hometown recognizes what AbleGamers is doing and that Pittsburghers with disabilities who want help playing video games know that AbleGamers is there for them.
“I really want to focus on reaching out to the disability community here in Pittsburgh,” Mr. Spohn said. “It’s much easier to get the attention of the international community than your hometown sometimes. We want to reach deeply into Pittsburgh and let them know this service exists.”
Joshua Axelrod: jaxelrod@post-gazette.com and Twitter @jaxelburgh.
First Published: September 10, 2021, 10:00 a.m.
Updated: September 10, 2021, 11:12 a.m.
