Disability and digital masks
Disability and digital masks
Musings on the documentary, "The Remarkable Life of Ibelin"
Last week, I watched the new Netflix documentary, “The Remarkable Life of Ibelin.” The documentary follows the life of a young Norwegian man, Mats Steen, who was diagnosed with a degenerative disease called Duchenne muscular dystrophy at the age of four. The disease steadily wasted his muscles, progressively reducing his mobility and independence. When he passed away at the age of 25, his parents feared that he’d never fully experienced love, friendship and making a difference in other people’s lives because he’d spent so much of the last years of his life gaming online.
What they learned after he passed was that he’d experienced all those things through World of Warcraft.
For those unfamiliar with the game, World of Warcraft is an MMORPG (Massively Multiplayer Online Roleplaying Game) set in the fantasy world of Azeroth. Players can craft their in-game personas, such as a human paladin, an undead warlock or a troll shaman, and then set out on adventures—either by themselves or alongside other players in guilds.
I first encountered World of Warcraft in late 2003 or early 2004, just before the official launch of the game. I was attending animation school at the time, and some of my classmates had installed the unreleased beta version of the game on the school’s computers to try it out.
I wasn’t a gamer, so it didn’t pique my interest until I came into the lab one day to discover my classmates laughing uproariously. I asked them what was going on, and they said that Blizzard, the company that makes Warcraft, was shutting down the beta. Rather than simply putting up a notification like “The beta version is now closed,” they released a bunch of unkillable monsters into the capital cities. The players were doing their best to take the monsters down anyway, but it was a hopeless, if hilarious, effort in futility.
This moment left a deep impression on me as a non-gamer. I felt there was something different about the game and the company that made it. It didn’t take itself too seriously, and there was something incredibly appealing about that.
I started playing Warcraft myself in around 2005 or 2006. As a non-gamer, I struggled for a while to learn the basics, but I found it a satisfying escape from the stresses of my life at the time. I remember one of my first characters was a human paladin, and there was something incredibly satisfying about smashing monsters with my oversized warhammer after a tough day of web development for my clueless boss.
Mats found a similar release from his life through his online persona, a dashing rogue named Ibelin. He described in his blog how he was able to do all the things in the game that his disability prevented him from doing in real life. I thought it was fascinating that he spent some time every day simply running his character around Azeroth, like an athlete out for a morning jog.
He also bonded with his fellow players. He experienced his first crush and virtual date, complete with flowers and ice cream. He became known as someone who his guildmates could turn to and who was always ready to listen to their problems and offer sage wisdom.
Sadly, he also hid behind Ibelin. He felt a deep sense of shame about his disability and loved the freedom and confidence that his buff, handsome Ibelin persona gave him. For nearly the entire eight years that he played, he refused all interactions that might unmask him. His guildmates were confused by his reticence to attend real-life meetups or even voice chat with them, but he had convinced himself that they would never accept him as he was.
At first, I was also confused by his extreme reluctance until I remembered that he’d only been 17 when he started playing Warcraft. I had been around the same age when I discovered the online world in the mid-1990s. The internet hadn’t fully formed yet, so my exposure had been through local chat message boards. I would log on, socialize and even flirt with other teens and young adults through text alone. I never outright lied, but I loved that I could shed my disabled body in this virtual world. I thought that people were responding to me as a person, to who I saw myself to be.
Eventually, I realized that I was only showing half of myself to these people that I wanted to call my friends. Someone would talk about going skiing over the weekend, and they’d ask if it was something I’d ever done.
What could I say? No, because my fragile bones would shatter like glass…
I didn’t want to lie, but increasingly the persona that I had intended to offer me freedom felt more like its own kind of prison.
Mats seems to have come to a similar epiphany towards the end of his life as well. His guildmates were shocked when he finally told them the truth, but ultimately, accepted him. How could they not? The most essential parts of him—his kindness and his heart—they had come to know through Ibelin.
I was almost in my 30s when I started playing Warcraft and much more comfortable in my disabled body than I had been in my teens. I eventually settled on Nymeera, an orc hunter, as my main Warcraft persona. She felt tough as nails and roamed Azeroth with great beasts at her side. I also enjoyed the sense of freedom that came with running her around the virtual world, seeking out new vistas or strafing enemies with my arrows.
I eventually settled into a guild called the Forbidding Sea Pirates. It was a guild created by several parents who played Warcraft to connect with their teenage children. Having the parents around kept a lid on some of the poor behaviour that had run rampant in the previous guilds I’d tried. In the guild’s heyday, we did larger group activities together on weekends, and it felt like the neighbours getting together for a pickup soccer game.
“Hey, can you get your dad on? We need someone to tank the dragon.”
I started playing again this summer in the hospital after being away from the game for a few years. My guild was still there, albeit much smaller than it had been. The diehards asked where I’d been and how I was doing. I told them the truth. I’d never hidden my disability from them. I’d never felt like I needed to.
After Mats passed in 2014, Blizzard created a memorial in the game modelled on his real-life gravestone in Norway. Every year, players gather to pay their respects to a person whose actions and kindness left a mark on everyone he met through the game. I’m so glad that the documentary is bringing his story to a wider community and reminding people that the possibility of connection—real connection—can happen anywhere that we dare to bring our true selves.
Athena is currently on medical leave from creativity coaching with Tilted Windmills while she heals in hospital, but hopes to be back to coaching in 2025. You can read about her ongoing rehab journey in Athena’s Art Newsletter.
Lovely musings, Athena 💚