6 ms·

My disabled son – ‘the nobleman, the philanderer, the detective’

208 points by gadders 8y ago

tosh 8y ago
> It's not a screen, it's a gateway to wherever your heart desires.
- taneq 8y ago
  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.
  - tosh 8y ago
    Well put.
foobar_ 8y ago
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.
Tor3 8y ago
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.
bwb 8y ago
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.
- mark_l_watson 8y ago
  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. Great article!
vegardx 8y ago
Make sure you're comfortable crying in public if you read this on a bus like I did.
- mcv 8y ago
  Or in the office with your team.
  - jamesholden 8y ago
    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.
Statsu 8y ago
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. :)
- ucosty 8y ago
  I didn't take your warning seriously. That was a mistake.
- gcirs 8y ago
  Too late D:
marbm 8y ago
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.
- thanatropism 8y ago
  This this. 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.
  - pawelmurias 8y ago
    Most mobile games are actually one-armed bandits in disguise.
  - sago 8y ago
    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.
    - stan_rogers 8y ago
      When the point being discussed is parental strategies and choices, referring to the parent rather than the child isn't dehumanizing.
thanatropism 8y ago
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.
noneeeed 8y ago
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.
mkzh 8y ago
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.
- davidkuhta 8y ago
  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?
- maxxxxx 8y ago
  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.
  - spicymaki 8y ago
    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.
    - maxxxxx 8y ago
      I haven't check the wording of the diversity initiatives. I am just observing that there are no people with physical disabilities in the building.
js2 8y ago
Related submission from 11 days ago: https://news.ycombinator.com/item?id=19011328 https://news.ycombinator.com/item?id=19011328
Wildgoose 8y ago
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. https://www.theatlantic.com/technology/archive/2013/04/google-death-a-tool-to-take-care-of-your-gmail-when-youre-gone/274934/ https://www.theatlantic.com/technology/archive/2013/04/googl...
- freedomben 8y ago
  Wow, had no idea, but this is great. Thanks so much for the ICYMI post.
wwwater 8y ago
There is a very good movie about Duchenne. It's called "Inside I'm dancing" https://en.wikipedia.org/wiki/Inside_I%27m_Dancing https://en.wikipedia.org/wiki/Inside_I%27m_Dancing
chasing 8y ago
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...
- LanceH 8y ago
  Computers help people step out of poverty for a bit as well, doing the job vcr's and books did before.
KevanM 8y ago
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.
lizzard 8y ago
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.
- eckza 8y ago
  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.
- Angostura 8y ago
  > 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.
- mwcampbell 8y ago
  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.
Angostura 8y ago
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.
JohnJamesRambo 8y ago
It doesn't say in the article but how did Mats play World of Warcraft in the latter stages of his disease? Beautiful article.

208 points by gadders 8y ago

tosh 8y ago

> It's not a screen, it's a gateway to wherever your heart desires.

taneq 8y ago
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.
- tosh 8y ago
  Well put.

foobar_ 8y ago

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.

Tor3 8y ago

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.

bwb 8y ago

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.

mark_l_watson 8y ago
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. Great article!

vegardx 8y ago

Make sure you're comfortable crying in public if you read this on a bus like I did.

mcv 8y ago
Or in the office with your team.
- jamesholden 8y ago
  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.

Statsu 8y ago

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. :)

ucosty 8y ago
I didn't take your warning seriously. That was a mistake.
gcirs 8y ago
Too late D:

marbm 8y ago

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.

thanatropism 8y ago
This this. 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.
- pawelmurias 8y ago
  Most mobile games are actually one-armed bandits in disguise.
- sago 8y ago
  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.
  - stan_rogers 8y ago
    When the point being discussed is parental strategies and choices, referring to the parent rather than the child isn't dehumanizing.

thanatropism 8y ago

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.

noneeeed 8y ago

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.

mkzh 8y ago

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.

davidkuhta 8y ago
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?
maxxxxx 8y ago
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.
- spicymaki 8y ago
  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.
  - maxxxxx 8y ago
    I haven't check the wording of the diversity initiatives. I am just observing that there are no people with physical disabilities in the building.

js2 8y ago

Related submission from 11 days ago: https://news.ycombinator.com/item?id=19011328 https://news.ycombinator.com/item?id=19011328

Wildgoose 8y ago

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. https://www.theatlantic.com/technology/archive/2013/04/google-death-a-tool-to-take-care-of-your-gmail-when-youre-gone/274934/ https://www.theatlantic.com/technology/archive/2013/04/googl...

freedomben 8y ago
Wow, had no idea, but this is great. Thanks so much for the ICYMI post.

wwwater 8y ago

There is a very good movie about Duchenne. It's called "Inside I'm dancing" https://en.wikipedia.org/wiki/Inside_I%27m_Dancing https://en.wikipedia.org/wiki/Inside_I%27m_Dancing

chasing 8y ago

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...

LanceH 8y ago
Computers help people step out of poverty for a bit as well, doing the job vcr's and books did before.

KevanM 8y ago

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.

lizzard 8y ago

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.

eckza 8y ago
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.
Angostura 8y ago
> 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.
mwcampbell 8y ago
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.

Angostura 8y ago

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.

JohnJamesRambo 8y ago

It doesn't say in the article but how did Mats play World of Warcraft in the latter stages of his disease? Beautiful article.