
My disabled son – ‘the nobleman, the philanderer, the detective’ - gadders
https://www.bbc.co.uk/news/disability-47064773
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mkzh
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.

~~~
maxxxxx
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
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.

~~~
C1sc0cat
Often its the hidden disabilities that get overlooked.

~~~
cbhl
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.

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noneeeed
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.

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lizzard
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.

~~~
mwcampbell
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.

~~~
wbkang
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.

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

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

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

~~~
mcv
Or in the office with your team.

~~~
jamesholden
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.

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

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bwb
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
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!

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KevanM
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.

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

~~~
taneq
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
Well put.

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js2
Related submission from 11 days ago:

[https://news.ycombinator.com/item?id=19011328](https://news.ycombinator.com/item?id=19011328)

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marbm
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
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.

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

~~~
thanatropism
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.)

~~~
dizzi90
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.

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thanatropism
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.

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Tor3
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.

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Angostura
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.

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

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wwwater
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)

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

Beautiful article.

