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

bbc.co.uk

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

#41

Post by stan_rogers »

sago wrote: post #31
thanatropism wrote: post #13

Earlier quoted context omitted.

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…

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 livin…

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

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

#42

Post by freedomben »

Wildgoose wrote: post #21

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. ht…

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

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

#43

Post by exolymph »

spicymaki wrote: post #25
maxxxxx wrote: post #24

Earlier quoted context omitted.

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 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."

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

#44

Post by thanatropism »

stan_rogers wrote: post #41
sago wrote: post #31

Earlier quoted context omitted.

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 livin…

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.)

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

#45

Post by sdrothrock »

maxxxxx wrote: post #24
mkzh wrote: post #18

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…

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.

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. :)

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

#46

Post by dizzi90 »

thanatropism wrote: post #44
stan_rogers wrote: post #41

Earlier quoted context omitted.

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.

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

#50

Post by hh3k0 »

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.
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