People living with neuromuscular conditions discuss ‘The Remarkable Life of Gaming’ at Netflix event  

22 November 2024

To mark the release of The Remarkable Life of Ibelin we teamed up with Netflix to host an intimate discussion with award-winning director Benjamin Ree.

The event held on Thursday 21 November at the Netflix head office was moderated by television presenter and broadcaster, Elle Osili-Wood, and brought together people from the muscle wasting and weakening community to share their lived-experiences of having a neuromuscular condition, along with thoughts on everything gaming, accessibility and the documentary.  

The Remarkable Life of Ibelin 

The film explores the life of Norwegian gamer Mats Steen, who lived with Duchenne muscular dystrophy and died aged 25. The documentary shines a spotlight on the importance of gaming for people within our community.  

Those gaming enthusiasts who attended aligned with Mats feeling of being free and living out fantasies such as walking and running that wasn’t possible in his day-to-day life due to his condition. 

It highlights the importance of the gaming world for people like Mats and the need to feel part of something and be seen in a non-judgmental way.  

For the love of gaming  

25-year-old Lauren, from Clitheroe, Lancashire, lives with Spinal Muscular Atrophy (SMA) type two and is a full-time wheelchair user. Gaming is a huge aspect of her life and is a chance to escape the real world. 

She said: “The Remarkable Life of Ibelin was a fantastic watch, it really touched me. I could relate to so much, as gaming is a huge aspect in my life too, for many of the same reasons. 

“It has always brought me a sense of comfort as I know that gaming is something that I can do, there is no barriers. I don’t have to worry about hearing about the things I can’t do or worry about not being able to take part.  

“Gaming has come a long way when it comes to accessibility and inclusivity, a lot of the triple A games that come out include accessibility settings to make the game playable for people with mobility issues, eyesight issues and hearing issues.

“It’s great to see how this world is evolving to make sure that everyone can join in because for the most part, disabled people are being told that they cannot join in, or if they can join in, they have to compromise and adapt their experience to join in. Gaming fosters fantastic relationships as Mats proved, and it really struck me to my core about the impact that gaming really can have.” 

Our Gaming Community  

A huge thank you to Danielle Maycox, Lauren Howorth, Liam Quinn, Martin Hywood and Vivek Gohil who spoke so candidly about their experience. Thanks to Netflix, Benjamin and Elle for working in collaboration with us to raise much needed awareness of muscular dystrophy.