For Robert, the discovery fundamentally changed how he saw gaming. What he had regarded as hours spent behind a screen had given his son friendship, relationships, community and purpose. “He was actually creating his life behind that screen,” he says.
By Jude Ower
Robert Steen believed his son Mats had spent much of his life isolated in a wheelchair in front of a computer, wasting his life. Mats had Duchenne muscular dystrophy and died aged 25. Only after his death did his family discover the life he had built as Ibelin, his avatar in World of Warcraft. Friends travelled from across Europe to his funeral – people his parents had never met, but who regarded Mats as one of their closest friends.
Mats’ extraordinary story became the subject of the award-winning Netflix documentary The Remarkable Life of Ibelin. For Robert, the discovery fundamentally changed how he saw gaming. What he had regarded as hours spent behind a screen had given his son friendship, relationships, community and purpose. “He was actually creating his life behind that screen,” he says.
In this episode of The Good Game Club, I talk to Robert about what parents misunderstand about gaming, why we should stop separating “real” and online lives, the human being behind every avatar, and why Mats’ legacy has become a story not simply about gaming or disability, but about friendship, love and the value of a life.
This interview with Robert Steen – hosted by Jude Ower - has been edited and condensed from the original Good Game Club podcast for length and clarity.
For people who don’t know the story, can you tell us about Mats and the origins of Ibelin?
I think the most important thing is that I'm a father. That's my favourite title in life, actually. My son Mats had an avatar in World of Warcraft, which was named Ibelin. And that's in a way where this name Ibelin comes from.
At the age of four, he was diagnosed with a very severe disease, a disease called Duchenne muscular dystrophy. This is a disease that attacks boys only, and it gradually takes away all of your muscle strengths, all of your functions, and in the end, also of your life, because the heart is also a muscle.
He lived though until he was 25 years old. Five years longer than what we feared. But the last ten years of his life, I cannot remember that anyone came calling on him at home. Nobody knocked on the door. Nobody was interested in visiting him. He was spending most of his time in a wheelchair in front of a computer, wasting his life. That’s the way we saw it. And then he passed away.
At his funeral, however, people came from all over Europe. People I had no idea existed, people I had not met, people who had never met Mats. People Mats had never met. Totally strangers, the way we looked at it. And then we learned that these people Mats had been online gaming with, in the game World of Warcraft, for thousands and thousands of hours.
These people, they identified Mats as one of their closest friends. They were able to spend whatever they had on a flight ticket going to Oslo, spend the night in a hotel to say farewell to one of their closest friends, which they never had seen and never have met.
That day, for me, was very much a day when we mourned a boy, a son, who had left us. But also where we, in a way, opened up a story about how he has lived his life in a way that we hadn't seen. even if we had been living with him under the same ceiling for 24-7 and 25-years-old together. So that's in a way the framework or the background of this story called The Remarkable Life of Ibelin.
As a parent, you were watching Mats gaming – what do you think you misunderstood about gaming as a parent?
I think I'm quite a normal guy. Normal father, living in my so-called normal life. The focus we had, and which I think is still the focus with many parents around, is to try to limit the number of hours spent behind the screen. Because we had spent five minutes analysing what we were doing, our children in front of the screen. And then we had decided that we should spend the next ten years condemning screen usage. So that's where, in a way, a total generation, my generation, were coming from.
It was also only after Mats passed away that I noticed that he was not spending his time in front of a computer, ruining his life. He was actually creating his life behind that screen and through that avatar. And in a way that came as a shock, both as a kind of shock-shock, but also kind of a positive shock, because throughout his life Mats, who had this severe disease, who was given these shitty cards from the beginning, he was almost never bitter.
He was never angry. He was never sad. Which you could probably expect from a boy with such a severe disease. And the knowledge that he was different. The knowledge that he couldn't actually do very much. The knowledge that he seemed to be isolated and that he would leave us very early. All of this didn't deprive him from being happy, curious, searching for new knowledge.
When we went on vacation, vacations that he couldn't participate on, he was so eager to see the pictures, see the movies when we came home. We were afraid of showing that to him, because we thought that that would give him an impression of being really isolated and outside. But it was the opposite we experienced.
That always made me curious, where do he get that energy from? Where do he get that sense of life from only sitting here in this room playing this stupid online video games. After he passed away, I learned why.
Can you tell me about the friendships and relationships he made while he was Ibelin?
It was a strange experience when he passed away because I knew that he had been playing, of course, a lot online games and he must have been playing with someone. So, I thought the decent thing to do was to try to give a message that he wouldn't log on anymore. But I didn't play online games. I didn't have the password for World of Warcraft. I didn't have an avatar. So how should I contact these people that he wouldn't be meeting online anymore?
But I did have the password for his blog. The last two years of his life, he wrote a blog about his life called Musings of Life. It's still out there for people who would like to read it, and I had the password for this blog, so I wrote the final piece of his blog, and told whoever wrote or read the blog that time has come for Mats. He had passed away and he wouldn't be logging on anymore. And then I left my email address on that blog and I had no idea if anyone would ever read it or if anyone would actually respond on it.
And I think it took only three or four hours, and the first mails started to come. I think we received within two or three days, almost 100 mails from 100 different people who had read the blog and who identified themselves as being close friends to Mats.
That came as the first really big surprise. I remember both me and my wife, we were looking at each other and we were wondering, what can this be? Is it spam? Is it someone who is trying to do something bad against us as a family? But reading these very long stories from people who really, truly understood and described the relationship with Mats made us convinced that yes, it is Mats they are talking about, it is the relationship with our son they are describing.
And this continued for a couple of days. And then we got the first request on what the family would think if some of them would come to Oslo to attend the ceremony of his passing. And we had a new discussion. Should we allow strangers to come in to maybe some of the most private parts of a family's life, namely saying goodbye to a son?
And we said that this is difficult to decide. We asked ourselves what would Mats say? And the answer of Mats would of course be yes. If they want to come, of course they should be allowed to come. And that's what we did. And then this group of people, gamers from all over Europe, came to the ceremony.
The oldest one that came was Anne from Salisbury, outside of London. At that time, when Mats passed away, he was 25, Anne was 61. So, there was an age difference of 36 years between this woman and this boy, who identified themselves as the closest of friends.
Anne wrote to me a couple of days before the ceremony, saying that if you are a father, the same way I know fathers, you probably would like to know a little bit more about what we are doing in World of Warcraft and in role playing games online.
So, if you have the time, if you have the energy and if you want to, we can meet for a dinner before the ceremony, the day before, the evening before. And I can share a little bit about what we are, what we are doing in the role-playing online world. And so, I did, and Anne started by saying to me that when I am fed up with role playing and Anne was a trained psychologist, she worked as a head-hunter in Brussels for the European Union, recruiting leaders for the union.
And when she met me, she said that when I am so fed up in role-playing, that's when I log on World of Warcraft. And of course, that kind of question requires a follow-up question from my side. So, I had to ask, ‘What do you mean about this Anne?’ And she says that Monday to Friday I sit interviewing candidates for leadership positions in the European Union in Brussels. They have the same suits. They have the same tie, the same shoes. They even tell the same stories, which they have rehearsed before they meet me, because they have probably used artificial intelligence to identify what I am looking for. I have no idea who these people are. The only thing I know that is that they are role playing.
But when I come home to Salisbury outside of London and I log on to World of Warcraft and I meet the people I have spent thousands of hours with, I know what their values are, and I know who they really want to be, what is in their head, what is in their heart. What is their real personality. So, that's the first kind of meeting I had with the friends of Mats from the online gaming world.
She turned my life, my perception, and my understanding of online role gaming or online gaming in general upside down. 61-years-old short woman. She was not a teenager. She didn't have pimples. She wasn't a boy. And she wasn't gaming in the basement because she was gaming in her living-room. So, everything I thought about online gaming was crushed that evening.
How did the Netflix documentary come about?
Four years later, I received a phone call from a journalist, a journalist with the Norwegian Broadcasting Company. She says that I heard about this funeral and the story of Mats and Ibelin in a New Year's party in 2014, only six weeks after he passed away, and I have not been able to get this story out of my head. But at the same time, I have had too much respect for the mourning of the family to call you.
But now, four years later, could it be possible that the family could share your story? Because I am convinced that this story has a learning beyond the people that was in the church that afternoon in Oslo. We said yes. I thought that this could be maybe then a story which could be helpful for parents with children with special needs and would end up somewhere in a subsection of a subsection of a subsection of the Norwegian Broadcasting’s home page.
And maybe some hundred people would read it. So that was the anticipation. And again, perception, anticipation and real life is not always the same. This story was published on the Norwegian Broadcasting pages in 2019, and within four days, 20% of the national population of Norway had read the story.
Within a week it was spread all over Scandinavia, continental Europe and within eight days also, it was the headline or the top news story in BBC's home page. It travelled to South America in Spanish and Portuguese. It travelled to India through the international network of BBC, and maybe as much as 30 to 40 million people saw this story and read it in one way or another.
So, my anticipation that this was a story may be interesting for 3 to 400 parents was also definitely wrong. I've done a lot of mistakes in my life.
And then you were contacted by someone who wanted to make the story into a documentary?
Because some of the people, of course, who read this story, they were also film producers, film directors. We got several approaches from people who would like to make a movie out of this story, and we said no to all of them. The attention that this story created through this interview was far beyond what we had expected. And it was, of course, also a strong emotional experience for us as a family. It's easy today, seven years later, to talk about it. But when we were sitting in the midst of it, it was quite challenging.
One evening my kid brother, who is 13 years younger than me, he calls me and he says that you know, that I'm a teacher? Yes, I know that you're a teacher. Some years ago, I teached primary school here in this area of Norway. And there I had a pupil who was very eager in making movies. His name is Benjamin Ree. He has just published his latest documentary called The Painter and the Thief. And if you're ever going to consider letting a director make a documentary about Mats, you can trust Benjamin Ree to do it in a proper way. And then, of course, they had been talking together. So the day after, when Benjamin called, we agreed to meet and Benjamin made a documentary about Mats. And the name of that documentary is The Remarkable Life of Ibelin.
It was premiered on the Sundance Film Festival, which is the biggest independent film festival in the US. The premiere was in Park City in Utah. It won the Audience and Director Prize of the Sundance Film Festival. Later, it won the Peabody Prize. It won the prize of the Freedom Prize of the Warsaw Film Festival in Poland. It won 17 different international huge prizes. It was shortlisted for the Oscars for it was nominated for the Emmys. It was shortlisted for a BAFTA in the UK.
if you divide the, the feedback into two different groups, the people who are not experienced gamers have never played maybe online video games at all. They say generally that thank you for having opened our eyes. We had no idea that online video gaming could actually be social. We thought it was entertainment and entertainment only and therefore a waste of time. While from the younger generation, the video gamers themselves, they gave us feedback, that thank you for being an adult and telling what we are experiencing because we have not been able to come through or get across with the message ourselves.
Being able to show Mats in the real world and in the digital world is fascinating.
We should not treat offline arenas and online arenas as two different worlds, and especially not calling the one of these arenas as the real world, as if the other one is not a real world. I think that there is only one world, and we have to take care of it together.
It's the same as saying that I have an online life and then I have a real life. Also, of course, completely wrong and completely stupid. You only have one life, and we should take care of it as good as we can together. But we have many arenas and we have many places where we meet and interact and socialize and take care of each other. I think we should also bear in mind the words we are using, because putting inferiority on what is happening on the digital arenas, I can say today, as a 64-year-old man who didn't get it, as long as my son was alive, that this is a dangerous path to follow.
Benjamin wanted to tell a story about gaming, and about a boy who spent a lot of time on the gaming arenas. In a way, and these are his words, in a way that his grandmother could understand it. And doing that from a documentary point of view, it's quite challenging. But here, this guild Starlight, they had actually recorded everything that was written, so they had a chat log of 42,000 pages covering ten years. Which proved which avatars had said what to whom, in what situation at exactly those kind of moments in time.
And by having that, he could recreate what happened 15 years ago in a very special place where two avatars were actually saying something to each other. And through that, he has mixed our family’s personal VHS videos from our children's growing up with animation in a way that I think the documentary shows very strongly.
What do you think Mats would say to you’ve been able to see conversations between you and a girl?
This is where the choice of director is extremely important, because I know that there are things in these 42,000 pages which parents should never see, and I have never been shown. But what I have been told, which I think is fair, is that Ibelin, which is Mats, he was a lady’s man. He was at times dating several women at the same time, which morally and ethically is not good. Not even in Norway, but which made me as a father rather proud, because what I saw was this boy sitting in his room for ten years. Nobody called on our door asking for him.
What he saw was strong romantic affairs with girls, strong friendships. Every morning when he woke up, he knew that someone was waiting for him. He had a purpose when he woke up in the morning. He did things. I think my wife and I, we have received at least 50 messages, mails, from people telling stories on how Mats helped them when they were in dark corners of their lives. Some of them even say that most probably they wouldn't have been alive today if it hadn't been for the conversations that they had with Ibelin and Mats late at night.
This story, Mats’ story, your family story is something that I think is a story of humanity. You know, coming into this digital world, the bridge between the offline and online, it has such a profound effect on everybody who watches it. Why do you think that is?
I think there are probably lots of reasons, but some of the main reasons you have already mentioned. I think you said that this is a story about humanity. It's not a story about gaming. It's not even, even though there is a lot of gaming in the story, it's not a story about the gaming. It's not even a story about a boy who is born with a disease that takes his life early.
It is a story about humanity. It is a story about what is the value of a life. It is a story about what is friendship. It's a story about love. Is it possible to love somebody you have never, ever met? Answer to that is, of course, yes, but it's difficult to understand when you haven't experienced it yourself.
It's a story about companionship. It's a story about community. It's a story about making space for others. It is a story about society as such. And I think that it's, of course, a very emotional story. So, it hits us much more in the heart and in the stomach than it hits the brain.
The movie also won the Freedom Prize in Warsaw on the film festival in Poland. And the jury there said that this is a story that tells us about finding freedom in places where you seldom look for freedom.
So, I think it's all these elements around the life that Mats lived that really challenges us on some of our perceptions. Like it did with me when I met with Anne the first time.
Where do you think Mats’ story can go from here?
I strongly believe that we today have the least digitalized day for the rest of our lives. Digital technology will just be more and more important in our lives. And we have to, in one way or another, learn how to cope with it in a good way.
The other reflection is that there is good and bad in the world everywhere. Also in online gaming, also in offline life, and we have to, in a way, find the good balances there as well.
The story of Ibelin came from an origin, as you say. Namely, Mats a boy in Oslo, Norway. It has become a very, very strong part of contemporary Norwegian storytelling in a way. Two years ago, 2024, Ibelin was voted by the Norwegian people name of the year.
This year, on the 1st of January, the Norwegian Prime Minister, in his New Year speech spent 20% of his speech talking about screen usage, children and adolescents, and he put the context on that part of his speech into two cultural phenomenons. The first he started with was the story about Ibelin, that all people in Norway more or less know, and he says that this story shows us how strong social relationships, friendships can both occur and can be developed online.
That's the positive experience of digital arenas. On the other side, he used ‘Adolescence,’ the series on Netflix. On the contrary, a series which shows us how hatred and radicalism expel people from the communities around you, can also happen on the online arenas. They both exist, the Norwegian prime minister says. And for a society, we have to both accept and understand that they both exist in order to take care of the one and try to fight the other. I think for a national leader that's quite advanced, but I think it's quite right that we have to know both the good and the bad side of this.
One thing that also happened in Norway was that the Norwegian national Minister of Culture created what is called the Ibelin Prize in Norway. The Ibelin Prize is now in Norway, is being given to a young person who have done something extraordinary in making space for others, in society, or in communities over an online gaming platform, a person who has shown a special ability to take care of people who make trustworthy societies where you can feel safe and where you feel at home. This award was handed out first time a couple of years ago by the Prime Minister himself. And this is a way to showcase what kind of behaviour and put role models in front of others, that this is good gaming as you are also fighting for Jude.
The idea is that this probably doesn't stop at the border of Norway, between Norway and Sweden somewhere. This is a global phenomenon.
Imagine if we in a bigger thinking could actually both recognize and celebrate the millions of people who every night log on somewhere and they take care of someone who need that caretaking, and who can need that extra space or an extra hour of the time of someone. That is what Mats and Ibelin did.
So, after having run for half an hour, when he logs on, he always stopped and talking to someone. And this has created a movement. Last year, when his 10th anniversary of his passing was, I think it was more than 10,000 people who were walking the same path in World of Warcraft that Mats was running.
Blizzard had made a copy of his headstone in Elwynn Forest in World of Warcraft, which is a place that is now used for people who have lost friends for one reason or another.
I think there's something really magical and special to show the gaming community and outside of the gaming community that Ibelin is bridging the online and offline. Do you think this story could be that bridge?
I think that if we try to condense down to two elements, which this story about Mats and Ibelin really can tell us, it's about what we now ask about, namely, the bridge between the experience that the gamers have and the perception that the offline people has, because that can at times be very big.
Offline people, we focus on screen time, and the experience is actually friendships and relationships and close social connections on the online side or the online arenas. To bridge that divide, I think is very important, especially in a time where 40% of the population in the world are actually online gamers in one way or another. And I think that we are we who are outside of that online gaming world, we have a lot to learn, especially the culture of the online gamers.
My experience is that you have some very strong cultures inside the gaming world. Today, 12 years after the passing of Mats, they are still gathering on the day of his passing and they share stories from his life.
I still think that we look upon an avatar as less valuable than a human being. But I think we should remember that behind every single avatar is a human being who needs to and should be seen, recognized and respected. And that is, I think, the bridge that we need to build.
That's the one part of Mats’ experience in life that we could bring with us. The other one is that he had kind of a superpower.
The superpower of Mats was that he made the most out of the life he was given. And very few of us can say that we are doing the same. I cannot. And he had a secret, a special secret. He spent most of his life finding value and also joy in helping others. That's where he spent his life and his time, helping others, primarily by giving time.
And imagine if we in the future could see a movement which maybe once a year gave 30 minutes to others. What would that do with humanity? 7 billion people spending 30 minutes at the same time with somebody else who needs time. That would really have been a big change. Not much for the individual, but fantastic change for humanity.
So, due to two things: helping others - value and joy - and building the bridge between experience and perception.
What do you think Mats would make of the work you’re doing in gaming?
I think Mats would have said three things. The first thing he would have said is that this is far too much fuss around me and my person. He didn't like attention.
The second reflection is that he would say that his father and mother had gone totally bananas.
But the third thing is that I think he would have been proud. I think he would have been truly proud that he could actually contribute, especially to opening up the eyes of the ignorance for the real value that can be found in online gaming, especially in this social part of it.
Today I would claim that online gaming is at least one of the largest, biggest social infrastructures that humans have ever created. This evening, Norwegians will game with Brazilians, British will game with Germans. South Americans will game with Chinese people, and they will do it on a common ground in a natural way.
Usually when we talk about social infrastructure, we think about family. We think about the sports club. We think about community building, the library, these kinds of things. But most people don't meet there. Most people meet in servers. Most people meet in guilds, and they are really experiencing strong social relationships and experiences in these servers, in these guilds. And that is what we as a society both should not only understand but also appreciate when the outcome is good and when the outcome is not good. We should find ways of fighting it.
Watch or listen to the full conversation with Robert Steen on the Good Game Club podcast here Good Game Club Podcast - YouTube.
