
Man with ALS writes patch for Gnome using morse code (with touching story) - pufuwozu
https://bugzilla.gnome.org/show_bug.cgi?id=78514#c19
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noonespecial
Kind of humbling, no? I've got plenty of excuses why I don't contribute more
to OS projects, but when a guy bangs out a patch _with his knees using morse
code_ while dying of ALS, they all suddenly seem pretty lame.

My hat's so far off to this guy, its on the floor in front of me.

~~~
Groxx
Touching, but at the risk of being karma-annihilated: what else would be be
doing?

He's probably sick of being useless, can't get paid to do anything (and
wouldn't want to be, it'd be pity money), and wants to do something both
productive and helpful. So he found a way, has supportive family that helped
make it possible, _and has a huge amount of time in which to do it_. If I had
that much time on my hands I'd be fixing a lot more than I am now, when I'm
spending time with my wife / friends / at work.

~~~
prpon
Dude, you probably haven't seen anyone close by suffer from a debilitating
disease and pass away in the recent times. It is painful for everyone involved
and it takes tremendous amount of dedication to work on something like gnome.
He could have said _who gives a shit_.

No one dying from a disease ever thinks that 'Oh, next week is gonna be my
last, let me enjoy it'. Every day is a struggle trying to find something that
might help you live better or longer. Working on an OS project is the last
thing you would think of if you don't believe it passionately.

~~~
Groxx
At which point did I state the opposite of any of that, or even imply it?
You're _agreeing_ with me. "No one dying from a disease ever thinks that..."
is precisely my point, instead people look for things with _meaning_.

Like contributing to community projects.

My point is more that people go all hero-worshipy when someone does something
cool when they are dying, and take everything out of context and set them on a
pedestal and it's ludicrous. All rationality goes out the window. "... they
all suddenly seem pretty lame" is a flawed way of looking at the world, a loss
of context, and it helps nobody.

~~~
prpon
When you are dying, _All rationality goes out the window_. Working on open
source project is the last thing they worry about.

Let me ask you something. _Whom do you respect?_

~~~
Groxx
> _When you are dying, All rationality goes out the window._

This is ALS. A progressive, multiple-year disease. Via Wikipedia[1]: Death
usually occurs within two to five years of diagnosis.

I've met plenty of rational dying people. Except when it comes on extremely
quickly, most everyone I've encountered or heard about has been _more_
rational than the people around them, not the reverse. People don't suddenly
become invalids when they have to face their own mortality.

[1]:
[http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis#D...](http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis#Disease_progression)

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mayank
Once a hacker, always a hacker. What an amazing story! And to think he was
coding raw GTK, which is a nightmare even with vim+autocomplete. Sample from
his patch:

    
    
        image = eog_thumb_view_get_first_selected_image(EOG_THUMB_VIEW (priv->thumbview));
        g_return_if_fail (EOG_IS_IMAGE (image));
        file = eog_image_get_file (image);
        filename = g_file_get_path (file);

~~~
unwind
Meh. I would disagree; It's very subjective.

Sure it might look very verbose on first sight, but most of the seemingly
excessive text is just there since it's C.

You get used to it, and the GTK+-family API:s are generally very well-
designed, very orthogonal and predictable. The verbiage "falls away" from your
sight after a while, and you just do what you want done.

~~~
zem
i think he meant it in the context of the long function names really making a
difference when you have to tap each character out in morse code with your
knee.

~~~
unwind
Ah, good point of course. For that reason, I really hope he used some kind of
completion in the IDE/editor.

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srean
This is so humbling. It also makes one wonder what are good input tools for
people with handicaps. I can think of two projects: (i) Dasher
<http://www.inference.phy.cam.ac.uk/dasher/> discussed here
<http://news.ycombinator.com/item?id=2142934> and (ii) Emacspeak
<http://sourceforge.net/projects/emacspeak/> authored by T.V.Raman who himself
is blind.

My family has a history of retinal detachments, and I have a tear myself. But
I have never given it much thought, because these are always things that
happen to others, not you.

Are there input devices based on Braille, wondering if it would be faster ? As
an aside, there used to be code in the Linux kernel which on certain kernel
panics would communicate the error message through Morse code using the
integrated speaker.

Edit: About Braille, I was thinking more in the lines of a small 6 button or a
similarly limited device.

~~~
Groxx
From some of my earlier investigations, handicapped computing support is
astonishingly bad and expensive. Largely because many things are near one-off
limited-use solutions that can't be re-sold... but nothing is ever modular or
adjustable or could be tweaked to _be_ used in multiple situations anyway. The
DIY crowd for such things, meanwhile, keeps hacking up things like this for
almost no money.

And it only gets worse once you come to software. Hardware interfaces have a
general communication format - websites do not. Applications do not. Almost
_nobody_ makes software with hinting for assistive devices, despite tools and
standards existing. I suspect it's mostly because it's extra work, and doesn't
(usually) significantly help to pay the bills when added.

------
avar
Link to his patch applied to the eog.git repository:
<http://git.gnome.org/browse/eog/commit/?id=EOG_2_91_6~42>

------
olalonde
Can't wait until I get the fix through Ubuntu's update manager so that I can
tell the story behind the "Copy image" menu item to my family and friends!

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kprobst
I especially liked the GNOME member's response. Classy and dignified.

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kareemm
My first job out of school was writing code at ALS.net. It was started by
Jamie, a mechanical engineer to find a cure for his brother Stephen, who had
just been diagnosed (and was eventually turned into a movie:
<http://www.westcityfilms.com/smsf.html>).

The horrible thing about ALS is that your body deteriorates, while your mind
stays 100% fine.

Stephen was physically in pretty rough shape by the time I started. He loved
playing video games with his brothers, so Jamie made a little mouse-like
device for Stephen that also allowed him to mimic keypresses.

Once a week, we'd all hop online and play Diablo together. It was interesting
getting to know Stephen this way - he was barely able to talk when I first met
him, but he could type using Jamie's device.

(Aside: Ben, the third brother, now runs PatientsLikeMe.com, a support
community for people with diseases like ALS).

------
Hacktivist
If you aren't familiar with ALS, you might have heard it under the name Lou
Gehrig's disease.

<http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis>

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2mur
Awesome. We're naming our 4th son (currently 20+5 weeks) Adrian. I loved the
post and the picture. Sounds like a great man RIP.

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varjag
There's a mention his father went to India for treatment. Is that because they
are particularly good at treating ALS, or is it a health insurance issue?

But it takes incredible willpower to continue doing anything in situation like
this. My hat's off.

~~~
prawn
Can't speak for that question or this case specifically but I was sick
(gastro) in India a few years ago. My now-wife went off to find medication.
The pharmacist had her describe the problem and put together a bag of tablets
and electrolyte drinks. She asked how much. He said "30." She said "30
dollars?"

He said, "No, rupees."

I think that was less than 70 US cents at the time.

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BasDirks
Respect! Now there's a mantra:

ACCEPTed COMMITed RESOLVEd

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mode0
Someone who doesn't give up. +1

