My disabled son – ‘the nobleman, the philanderer, the detective’ | Hacker News Reader

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

bbc.co.uk

208 pointsgadders69 comments

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.

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.

Often its the hidden disabilities that get overlooked.

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.

> I am not aware of any well run diversity effort that does not include physical ability.

This is a hard statement to falsify because you can dismiss any rebutting example as "not well-run."

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.

Quit wishing you saw more, and start doing more.

Are you based in the United States?

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.

Just a thought from my personal experiences. :)

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.

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.

Considering he wasn't expected to live past 20, I think it was reasonable. Some find their meaning of life in jobs, but not all do.

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/googl...

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

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

Or in the office with your team.

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.

Poignant and touching story.

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. :)

I didn't take your warning seriously. That was a mistake.

Too late D:

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.

Great article!

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.

Maybe you would have gotten into drugs, been seduced by a crazy person and ended up with a baby, or become rich. Cest la vie.

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!

Thanks very much for sharing :)

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

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.

Well put.

Related submission from 11 days ago:

https://news.ycombinator.com/item?id=19011328

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.

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.

Most mobile games are actually one-armed bandits in disguise.

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.

When the point being discussed is parental strategies and choices, referring to the parent rather than the child isn't dehumanizing.

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.

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."

[1]http://pharylon.github.io/uploads/fire_and_ice.jpg

This hits close to home to me. I am disabled now (but I still work, of course!), but I wasn't then.

However I spent 10000s of hours on an online MUD called Godwars Apocalypse. I spent nearly all of my time helping people, finding and exploiting bugs, helping the game designers and programmers and just playing the game.

Then for reasons I can't at all recall, I had stopped playing the game for a while. In the interim, someone had accessed my account (seemed to have been from my main computer in fact. Cute practical joke :\ ) and told everyone that I had died.

I came back months later to play some more and I found out there were vigils, an entire area created for and named after me as if I was the in-game lore itself. Players were incredibly confused when I said it was me, and able to prove it by logging into all of my accounts and discuss previous private interactions in an intimate manner with a variety of players.

I was _incredibly_ touched. I didn't realize anyone cared that I existed. I just played the game and tried to make it a better place for the few hundred people that also enjoyed sitting in front of a black zMUD screen for 12+ hours a day.

That day that I came back truly changed my life. Outside of the game I was an in-compassionate jackass. I was crass and heartless. After that day I realized that every little thing you can do can mean something to a lot of people. It really did form my life (and my eventual hobbies and profession as an adult).

BUT.

I also learned something unfortunate.

Days later, when it was found out that "I had lied" (I did not! I didn't even know anything about me "dying") because "the IPs matched", everything was torn down. My characters were gutted. I was made fun of and I lost real life friends.

I became completely ostracized from the game, the community and 2 other gaming communities close to it. I was destroyed. I lost everything. Quite literally everything that mattered to me in my adolescent life.

Nobody believed me that I did not try to deceive them (and was wholly unaware of the situation until I logged back in). Nobody cared about the 10000s of hours I spent building the community, helping newbies (with in-game items I spent 100s of hours farming myself) or how much time I spent working testing the game so others could have a better experience.

I've always held this as a moment of, "They don't care about you until you're gone, but when you're back they go back to not caring again."

It did lead to my first programming job that really mattered to a group of people (another MUD, Cursed Lands), and my first major teaching experiences. Guess what my profession is now?

Fast forward to my mid-20s and I was diagnosed with a rather terrible chronic disease (I will likely die because of it, but not from it). I once again manage a community (of 10000s) of people as a hobby and after reading this article I can see what happened to Mats happening to me.

It makes me about as happy as it makes me sad. Hopefully I do a good enough job in enriching people's lives to matter as much as Mats did, or even as I did at one time.

And hopefully my brother/father/mother/friend doesn't decide to play a prank on me again.

As an extension to this, I'd like to clarify on the part where I mentioned that I lost real life friends.

Someone online went out of their way to 'dox' me (in the early 90s no less!) and contact everyone they could that may know me.

Awful things were said. A wide variety of things from me being a practicing satanist (with a screenshot of me role playing in game) to some strange elaborate claim that I had tried to defraud people online.

Quite the rollercoaster for someone that just wanted to go home and MUD every day after school.

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.

Man, this brings back memories of telling my mother's Runescape family of her passing...

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.

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.

Brought tears to my eyes. What a great story.

I too have made a number of friends on WoW, and met some in person. You can truly meet some of the best people in that game.

- Epicgrim @ Area 52 (currently)

Very touching story.

I'm remembering one of the first touching stories of an influential MMORPG gamer disappearing because of her dead: A story known as "A Story About a Tree":

https://www.raphkoster.com/games/essays/a-story-about-a-tree...

It's in the linked page, but the story was not actually true

Wow. Never realized that. I remember reading about this on the official site and there was actually a tree with a memorial in the game.

But perhaps it was unrelated.

:-(

I was a bit unclear. There was an actual memorial created. There was no evidence found that the user Karyn was a real woman who passed away. (The theory put forth in the news article was that it was a male role playing as a female).

This is far more moving and touching than my own experience with WoW, but I did get my job through WoW - https://ckluis.com/wow-landed-me-a-job-hobby-networking-work....

That is awesome. I've been raiding with the same hardcore guild since vanilla. It's amazing how many players are developers, sys admins, infrastructure, and even other professions like doctors and lawyers.

Is someone cutting onions? What a beautiful story. RIP Mats. My condolences to your IRL and online family.

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...

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

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

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

Beautiful article.

Wow, I didn't expect to be taken on such an emotional ride. Great article, thanks for sharing.

It reminds me of this year's Microsoft super bowl commercial, which focused io the Xbox adaptive controller: https://www.youtube.com/watch?v=CM2QJO2IDFo

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