I'm a Software Engineer with the same condition as Mats (Duchenne). There are many others like me as well with in this and other professional industries.
Severe physical disability isn't a complete social and economic dead end. But it is a tough path that I wouldn't wish on anyone. I can say that a "normal life" does still seem to be largely out of reach for us. The worst of it is by far the lack of independence that arises from needing care around the clock. But it's definitely not hopeless. I'm lucky enough to have a good community in my workplace, and very enjoyable work to fill up my attention. This prevents me from thinking about disability too much.
Thanks for your willingness to share and I'm happy you've found a good community.
If you're open to further discussion, you mention a "lack of independence", are there any technologies you've found that do empower you and help you reclaim some independence? And have you had any exposure to VR?
I often wish that the diversity moment wasn’t mainly about race and sexual orientation but also about things like physical disabilities. When I look around my company of around 1000 people there is not a single wheelchair, no deaf or blind person.
I find it fascinating how much technology that many of us take for granted, or even disparage as being "lazy", can be a total life-changer for those who are disabled in some way.
My cousin is deaf, and prior to the internet his only real way of communicating in real time over distance required a text-phone device. Hearing people often criticise the deaf community for being insular, but a big part of it is that it can be very isolating, like living in a foreign country where no one speaks your language. The internet has totally changed that for many of them.
While a lot of the smart-home stuff seems excessive for me, being able to control your lights, heating etc, see who is at the door or even unlock it for someone, all from your phone or smart-speaker, is a real boost for someone with limited mobility.
I recently saw something about a guy in a wheelchair who flies drones using a VR headset. I've never been really taken with VR, but for him it's liberating, giving him a physical freedom he could previously only dream of. Sounds like that was very much the case for Mats too. I love the fact that he clearly got to live a life that had some meaning and importance for him with people he cared about.
I have more than 400 days of playtime (the actual time logged into the game) in World of Warcraft, mostly between being 15 and 22 and I don't regret a single second of it.
Most people not familiar with gaming don't understand that, but I have very fond memories, found friends I'm still in contact with and even achieved a level of competitiveness I'm still proud of today and mention it in my full CV (Arena #1 and Top3 world raiding guild for whose curious). And that for ~12€ a month in a time where I and my family had little money.
I still went out two to three times a week to do sports and occasionally met with friends apart from sports, but my fondest memories are about the time spent in this other world with a big circle of friends and a place in my guild, where I was appreciated.
My fondest memories about my earlier childhood are not only vacations or building wooden airplanes with my dad, but also beating Zelda Ocarina of Times.
Most people I met outside of IT and gaming don't understand that and even think it's sad. But I'm just glad I grew up in the time I did and had this amazing opportunity games and online gaming gave us.
A moving article. I had a similar experience, although on a different scale, as I had lost most of my hearing at age 12. It was liberating for me to converse with people by writing in the chat in World of Warcraft, whereas I dreaded conversations in person, as they made me feel stupid and like a burden. I can only imagine how liberating it must've been for Mats. Rest in peace, Mats, I'm sure your friends will remember you for the rest of their lives.
So many of you see this as touching and heartwarming. From the point of view of a disabled adult, this is rather a story of a man who was isolated from his community. It sounds like he didn't have friends in offline life, or disabled friends, or connections with any political ideas of having the right to an independent life. No way to live apart from his parents and manage his own personal care assistants, no college, stuck living at home with parents who treated him like a child. Loving parents are wonderful, but parents who don't enable a disabled young person to have a life apart from their role as child and "patient", are not educated about the opportunities that we have in society or about our rights.
I'm glad he had his guild, certainly. I ask you all to question your emotional reactions to the "touching" aspect of this story. Instead, feel some solidarity, even rage, for the opportunities denied to this person. And, if you are the parent of a disabled child, please get to know some disabled adults, and get familiar with the many writers and thinkers out there so that you can educate yourself, and also, put your child in touch.
> Instead, feel some solidarity, even rage, for the opportunities denied to this person.
By whom? His parents or the disease? we don't know enough about how his parents treated him, or how much effort they put in to supporting a full life, to suggest they denied him anything. All we do know is they deeply regret a regimented bed-time regime.
My biggest takeaway from this was that his parents refused to ever see him as anything other than a disabled child that played too many computer games.
You're right, and I'm ashamed that despite having a disability myself (visual impairment), I missed this.
By age 25, he should have had a job. His parents should have encouraged him to pursue a line of work that can be done remotely, such as programming, design, writing, or tech support. The people who came to his funeral from far away should have included his coworkers.
For those who may be unaware, it is possible to use Gmail to set up a "Final E-mail" to someone (or several) people in the event of your death.
This relies on there being no access to your account for a set period of 3, 6, or 9 months. A query e-mail is sent out, and if it is not responded to then your "final" e-mail is released.
I have set up such an e-mail for my wife. Others may want to consider doing the same.
I met my wife on World of Warcraft 8 years ago, now we live together with our big family. We stopped playing a while ago but still have a close friend from our guild we see most years.
WoW has brought so many people together, sometimes in life changing ways.
What a time to be alive.
Amazing how we manage to create environments in which people with such severe physical conditions are able to find pleasure and belonging. While for so long, such a physical state would have rendered this impossible.
Careful reading this one at work if you’re in an open office... I don’t know how professionally acceptable crying at your desk is. Great article about the value of human connection over atypical mediums. :)
This article went viral in Norway, helping lots of parents see the value gaming can have. Very touching how he was confined to a chair, but through RPing online could be whoever he wanted and had a positive impact on many people.
A beautiful heart warming read that moved me to tears, thx for sharing! I sent it to a few family members who struggle to understand the appeal of video games.
I agree(!) both that it was heart warming, a reminder that our human spirits burn bright and can accommodate to just about anything, and also the utility of video games. I have enjoyed ‘game programming’ in several contexts including work on two Nintendo video games but don’t play them myself except when our kids were young and then decades later with our grandchildren when they were young. My brother’s wonderful relationships with his grandsons is built around talking about, strategizing about, and playing a few games they love.
I suppose they're good if you really do need to escape the reality you're in. But I regret the amount of time I spent playing MMO's as a child/teenager. I invested all my time in virtual worlds instead of the real one, and had no friends because of it. I grew out of it, but I wonder how different my life would be now if I had done so earlier.
My father had Muscular Dystrophy and enjoyed computer games that allowed him to do things he could never do. He was a particular fan of Microsoft Flight Simulator and we would spread out the big maps of airfields and plot courses and enjoy the virtual freedom of a city or country with the expansion packs.
I think if he were alive today, he'd probably have a VR headset.
Looking back I regret the times that I, in my ignorance, nagged him about still being on the computer and just gliding along the sky.
A very touching story. Yet somehow I feel happy for him, that he had found his friends online.
I used to play a lot of MMO games when I was a teenager, not WoW exactly. I wish more kids played that genre nowadays. I think all the competitive games nowadays like dota2/lol/fortnite don't have the same feeling like MMOs. Obviously, you can find many friends in them too, but the culture is so much different. In MMO games you could just spend hours chatting with people and doing nothing else.
I'm sure there are many more cases like that and I think that MMO games are really one of the best experience in gaming. You can meet people from all over the world. It's a bit like traveling, but focused solely on people not on food/history, etc. Ofc, that's my opinion.
Like other peers on this thread, I have at least a couple hundred days of playtime between the ages of 13 and 16. I played 9pm-2am m/t/w/f as a dwarf paladin main tank through ICC heroic 25 man-mode and as a pvp healer in 2v2 and 3v3 arenas on weekends.
Nearly every belief I now hold about what it means to be a team member, to commit to a shared and ambitious goal, I originally felt while working through the game with my fellow 24 guild mates. So much work is required to plan and coordinate with people, to re-invent new strategies after unrelenting defeat by bosses for many many months with no progress, etc.
Many of whom were my closest friends during those years!
I've always found it incredibly frustrating when people refer to "the computer" as an object of interest. "I don't get what's so interesting about that computer." Nothing! It's not the computer that's interesting, the computer is a vehicle to whatever I'm ACTUALLY doing. Building software or fighting orcs or flying a spaceship or talking to my best friend. It's like telling someone who wears glasses that they're "addicted to those glasses" and asking what's so fascinating about a wire frame with some plastic discs in it.
My brother who was intellectually handicapped chose a similar escape from society. He died in his twenties of a pulmonary embolism. It was likely caused by a lack of exercise due to his excessive gaming habit.
Heavy multiplayer gaming is just coming into the mainstream. I never even got into it for its unsavory vibe, much like I never got into one-armed bandits and weed. I knew early alarmist reports were wrong, but speedy mainstreamization (along the lines of what's going on with weed too) is bound to erase previous criticism.
Despite not being a gamer this story touched me -- enough that it made me suspend the slower more rational critical "loop" temporarily. But people do get disable kids all the time, a cousin just got an autism diagnosis for her nonverbal 3-year old; and it's not good to enter gaming into the annals of it-can't-harm-at-least alternative medicine.
I spent a lot of my 20s playing City of Heroes. I made a lot of good, if virtual, friends there and even met my wife. If you came to my house and looked at all the family pictures hanging on the wall, among the pictures of our kids, wedding, and grandparents you'd find a screenshot of our characters[1] which we refer to as "our first picture together."
[+] [-] mkzh|7 years ago|reply
Severe physical disability isn't a complete social and economic dead end. But it is a tough path that I wouldn't wish on anyone. I can say that a "normal life" does still seem to be largely out of reach for us. The worst of it is by far the lack of independence that arises from needing care around the clock. But it's definitely not hopeless. I'm lucky enough to have a good community in my workplace, and very enjoyable work to fill up my attention. This prevents me from thinking about disability too much.
[+] [-] davidkuhta|7 years ago|reply
If you're open to further discussion, you mention a "lack of independence", are there any technologies you've found that do empower you and help you reclaim some independence? And have you had any exposure to VR?
[+] [-] maxxxxx|7 years ago|reply
[+] [-] noneeeed|7 years ago|reply
My cousin is deaf, and prior to the internet his only real way of communicating in real time over distance required a text-phone device. Hearing people often criticise the deaf community for being insular, but a big part of it is that it can be very isolating, like living in a foreign country where no one speaks your language. The internet has totally changed that for many of them.
While a lot of the smart-home stuff seems excessive for me, being able to control your lights, heating etc, see who is at the door or even unlock it for someone, all from your phone or smart-speaker, is a real boost for someone with limited mobility.
I recently saw something about a guy in a wheelchair who flies drones using a VR headset. I've never been really taken with VR, but for him it's liberating, giving him a physical freedom he could previously only dream of. Sounds like that was very much the case for Mats too. I love the fact that he clearly got to live a life that had some meaning and importance for him with people he cared about.
[+] [-] ascar|7 years ago|reply
Most people not familiar with gaming don't understand that, but I have very fond memories, found friends I'm still in contact with and even achieved a level of competitiveness I'm still proud of today and mention it in my full CV (Arena #1 and Top3 world raiding guild for whose curious). And that for ~12€ a month in a time where I and my family had little money.
I still went out two to three times a week to do sports and occasionally met with friends apart from sports, but my fondest memories are about the time spent in this other world with a big circle of friends and a place in my guild, where I was appreciated.
My fondest memories about my earlier childhood are not only vacations or building wooden airplanes with my dad, but also beating Zelda Ocarina of Times.
Most people I met outside of IT and gaming don't understand that and even think it's sad. But I'm just glad I grew up in the time I did and had this amazing opportunity games and online gaming gave us.
[+] [-] unknown|7 years ago|reply
[deleted]
[+] [-] hh3k0|7 years ago|reply
[+] [-] lizzard|7 years ago|reply
I'm glad he had his guild, certainly. I ask you all to question your emotional reactions to the "touching" aspect of this story. Instead, feel some solidarity, even rage, for the opportunities denied to this person. And, if you are the parent of a disabled child, please get to know some disabled adults, and get familiar with the many writers and thinkers out there so that you can educate yourself, and also, put your child in touch.
[+] [-] Angostura|7 years ago|reply
By whom? His parents or the disease? we don't know enough about how his parents treated him, or how much effort they put in to supporting a full life, to suggest they denied him anything. All we do know is they deeply regret a regimented bed-time regime.
[+] [-] eckza|7 years ago|reply
[+] [-] mwcampbell|7 years ago|reply
By age 25, he should have had a job. His parents should have encouraged him to pursue a line of work that can be done remotely, such as programming, design, writing, or tech support. The people who came to his funeral from far away should have included his coworkers.
[+] [-] Wildgoose|7 years ago|reply
This relies on there being no access to your account for a set period of 3, 6, or 9 months. A query e-mail is sent out, and if it is not responded to then your "final" e-mail is released.
I have set up such an e-mail for my wife. Others may want to consider doing the same.
https://www.theatlantic.com/technology/archive/2013/04/googl...
[+] [-] freedomben|7 years ago|reply
[+] [-] vegardx|7 years ago|reply
[+] [-] mcv|7 years ago|reply
[+] [-] davedx|7 years ago|reply
I met my wife on World of Warcraft 8 years ago, now we live together with our big family. We stopped playing a while ago but still have a close friend from our guild we see most years.
WoW has brought so many people together, sometimes in life changing ways.
[+] [-] kkleindev|7 years ago|reply
[+] [-] Statsu|7 years ago|reply
[+] [-] ucosty|7 years ago|reply
[+] [-] gcirs|7 years ago|reply
[+] [-] matsemann|7 years ago|reply
[+] [-] bwb|7 years ago|reply
[+] [-] mark_l_watson|7 years ago|reply
Great article!
[+] [-] therealforsen|7 years ago|reply
[+] [-] trashE|7 years ago|reply
[+] [-] KevanM|7 years ago|reply
I think if he were alive today, he'd probably have a VR headset.
Looking back I regret the times that I, in my ignorance, nagged him about still being on the computer and just gliding along the sky.
[+] [-] wrestlerman|7 years ago|reply
I used to play a lot of MMO games when I was a teenager, not WoW exactly. I wish more kids played that genre nowadays. I think all the competitive games nowadays like dota2/lol/fortnite don't have the same feeling like MMOs. Obviously, you can find many friends in them too, but the culture is so much different. In MMO games you could just spend hours chatting with people and doing nothing else.
I'm sure there are many more cases like that and I think that MMO games are really one of the best experience in gaming. You can meet people from all over the world. It's a bit like traveling, but focused solely on people not on food/history, etc. Ofc, that's my opinion.
[+] [-] wittedhaddock|7 years ago|reply
Nearly every belief I now hold about what it means to be a team member, to commit to a shared and ambitious goal, I originally felt while working through the game with my fellow 24 guild mates. So much work is required to plan and coordinate with people, to re-invent new strategies after unrelenting defeat by bosses for many many months with no progress, etc.
Many of whom were my closest friends during those years!
Thanks very much for sharing :)
[+] [-] tosh|7 years ago|reply
[+] [-] taneq|7 years ago|reply
[+] [-] js2|7 years ago|reply
https://news.ycombinator.com/item?id=19011328
[+] [-] marbm|7 years ago|reply
[+] [-] thanatropism|7 years ago|reply
An important counterpoint.
Heavy multiplayer gaming is just coming into the mainstream. I never even got into it for its unsavory vibe, much like I never got into one-armed bandits and weed. I knew early alarmist reports were wrong, but speedy mainstreamization (along the lines of what's going on with weed too) is bound to erase previous criticism.
Despite not being a gamer this story touched me -- enough that it made me suspend the slower more rational critical "loop" temporarily. But people do get disable kids all the time, a cousin just got an autism diagnosis for her nonverbal 3-year old; and it's not good to enter gaming into the annals of it-can't-harm-at-least alternative medicine.
[+] [-] FactolSarin|7 years ago|reply
[1]http://pharylon.github.io/uploads/fire_and_ice.jpg