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.
There's plenty of oddballs in the word that's for sure. I recently came across the book - "The Man Who Mistook His Wife for a Hat" that talks a lot about neurological ticks.
It's like a real-life version of Tad Williams' "Otherland". Except for the epilogue of the latter. Not considering the plot, of course, but the setting.
And it's good that I have a private office and not a cubicle.
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.
Glad I'm not the only one. I had to slink down in my chair to get below the cubicle wall so nobody could see. Touching story. I can't help but think though, that the parents seemed to be nearly oblivious. But they did repeatedly state how they are very 'traditional' and such.
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. :)
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 know criticism is rarely nuanced online, and it can unhelpfully trigger people's fight response. So I hope this doesn't come across as vicious, but:
> people do get disable kids all the time
struck me (a profoundly disabled person) as very dehumanizing.
I regularly trade quality for quantity of life. Socialising in ways that allow ways of relating I otherwise cannot access is not 'alternative medicine', it is living.
I respectfully suggest a bit more humility. Listen to disabled gamers before you firm up your opinion.
But as you see from responses and down votes even raising questions is frowned upon now.
(Racists and other bad-faith actors may have ruined the "can't even raise the question" routine. It's unfortunate -- we're quickly losing the ability to think critically; and you know what the great men have said about the unexamined life.)
There is lots of room for cognitive dissonance here.
The article hardly claims that gaming is a universally GoodThing(tm). Rather that it isn't universally a bad one. In my reading, nuance seems to be the very point.
Interesting point about planning for contacting digital friends.
For family tech support reasons I have my dad's and mom's Facebook passwords. I don't think they have many digital friends, but still.
My wife doesn't have my passwords -- except the ones for my phone and my laptop -- but if she opens them she'll find Facebook etc. logged in (even though I've sworn off it for a while now). She'll also be able to see whom I've chatted with. Should I die suddenly, a handful of people who are very important to me may find out.
But if something happens to both of us jointly (this night atypical rainfall in my city -- twice the average for February in under six hours -- killed a bunch of people) -- these digital friends will go uncontacted. Maybe I should give some of my passwords to my parents too.
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'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.
Are you sure that is the case?
My company includes physical abilities as a key part of its diversity initiatives. I work with a principle engineer who uses an electric wheelchair. I am not aware of any well run diversity effort that does not include physical ability. Check with your company's diversity rep to see if they don't have physical ability as part of it. I would be surprised if they did not.
Sometimes the accommodations are just as hidden as the disability. Things like giving people flexibility about when they come and go at work, or putting someone's desk in a different location (near windows, or away from windows).
I admit that some folks specialize in physical manifestations of ADA (wheelchair ramps, elevators, bathrooms). In some sense, these are easier problems to solve -- you just need to pay a contractor to build a thing on the building. Accommodating hidden disabilities often requires getting people on a team to change their behavior or response to a behavior; a much harder problem.
Engage your diversity team? Drive the changes you want to see? These are areas you can help with, and have a meaningful impact in pretty much anywhere.
I'd check to see if there are barriers preventing someone with physical disabilities from actually getting a job at your employer.
This includes the physical building (is it ADA complaint? is there a ramp or wheelchair-accessible way through the front doors? are elevators in good working order and clean? are there wheelchair-accessible bathroom stalls in the bathrooms, or gender-neutral facilities that are big enough to turn a wheelchair around in?) as well as process (is the health insurance comparable or better to a megacorp? is the company established and financially successful? is there diversity in the age of folks working there? can people just leave in the middle of the day if they have a medical appointment and come back later?).
My experience at Google has been that folks care about all kinds of diversity: race (both PoC and white people), gender (women, men, non-binary, and so forth), sexual orientation, as well as physical and psychiatric/invisible/mental disabilities.
Your company is smaller, so it might be choosing to only focus on certain kinds of diversity that either helps the business grow in a certain area (say, recruiting), or helps the business in some other way (say, builds goodwill with the company's customers). If your company succeeds and grows, it may be later able to spend more money running more kinds of diversity programs.
I wonder -- often people think of deafness or blindness in terms of 100% disabled.
What about people who have very narrow fields of vision (e.g. from macular degeneration or glaucoma), people with severe hearing loss that doesn't result in total deafness, etc.
Many people don't realize I'm deaf because I have a cochlear implant and a REALLY good set of coping strategies. Sometimes push will come to shove when I ask for accommodations and other parties don't believe they're necessary or that I "deserve" them because I'm not "really" deaf.
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'm not physically disabled. But I've been very curious over the years about how modern video games can allow disabled gamers to step momentarily out of their condition. Even single-player games. Red Dead Redemption 2, for example, has such depth in the world-building...
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.
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.
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.
> 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.
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.
I read this article at work this lunchtime and had to empty my glasses out. I don't recall crying while reading a news article before, so no idea what was going on there.
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.
49 comments
[ 4.2 ms ] story [ 114 ms ] threadGreat article!
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.
> people do get disable kids all the time
struck me (a profoundly disabled person) as very dehumanizing.
I regularly trade quality for quantity of life. Socialising in ways that allow ways of relating I otherwise cannot access is not 'alternative medicine', it is living.
I respectfully suggest a bit more humility. Listen to disabled gamers before you firm up your opinion.
(Racists and other bad-faith actors may have ruined the "can't even raise the question" routine. It's unfortunate -- we're quickly losing the ability to think critically; and you know what the great men have said about the unexamined life.)
For family tech support reasons I have my dad's and mom's Facebook passwords. I don't think they have many digital friends, but still.
My wife doesn't have my passwords -- except the ones for my phone and my laptop -- but if she opens them she'll find Facebook etc. logged in (even though I've sworn off it for a while now). She'll also be able to see whom I've chatted with. Should I die suddenly, a handful of people who are very important to me may find out.
But if something happens to both of us jointly (this night atypical rainfall in my city -- twice the average for February in under six hours -- killed a bunch of people) -- these digital friends will go uncontacted. Maybe I should give some of my passwords to my parents too.
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.
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.
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 admit that some folks specialize in physical manifestations of ADA (wheelchair ramps, elevators, bathrooms). In some sense, these are easier problems to solve -- you just need to pay a contractor to build a thing on the building. Accommodating hidden disabilities often requires getting people on a team to change their behavior or response to a behavior; a much harder problem.
This is a hard statement to falsify because you can dismiss any rebutting example as "not well-run."
Quit wishing you saw more, and start doing more.
I'd check to see if there are barriers preventing someone with physical disabilities from actually getting a job at your employer.
This includes the physical building (is it ADA complaint? is there a ramp or wheelchair-accessible way through the front doors? are elevators in good working order and clean? are there wheelchair-accessible bathroom stalls in the bathrooms, or gender-neutral facilities that are big enough to turn a wheelchair around in?) as well as process (is the health insurance comparable or better to a megacorp? is the company established and financially successful? is there diversity in the age of folks working there? can people just leave in the middle of the day if they have a medical appointment and come back later?).
My experience at Google has been that folks care about all kinds of diversity: race (both PoC and white people), gender (women, men, non-binary, and so forth), sexual orientation, as well as physical and psychiatric/invisible/mental disabilities.
Your company is smaller, so it might be choosing to only focus on certain kinds of diversity that either helps the business grow in a certain area (say, recruiting), or helps the business in some other way (say, builds goodwill with the company's customers). If your company succeeds and grows, it may be later able to spend more money running more kinds of diversity programs.
What about people who have very narrow fields of vision (e.g. from macular degeneration or glaucoma), people with severe hearing loss that doesn't result in total deafness, etc.
Many people don't realize I'm deaf because I have a cochlear implant and a REALLY good set of coping strategies. Sometimes push will come to shove when I ask for accommodations and other parties don't believe they're necessary or that I "deserve" them because I'm not "really" deaf.
Just a thought from my personal experiences. :)
https://news.ycombinator.com/item?id=19011328
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...
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.
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.
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.
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.
Beautiful article.
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.