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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’

#31

Post by sago »

thanatropism wrote: post #13
marbm wrote: post #11

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…

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.

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

#32

Post by 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.

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

#33

Post by jamesholden »

mcv wrote: post #8
vegardx wrote: post #7

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.

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

#34

Post by cbhl »

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.

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.

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

#35

Post by eckza »

lizzard wrote: post #32

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…

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.

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

#36

Post by cbhl »

C1sc0cat wrote: post #29
spicymaki wrote: post #25

Earlier quoted context omitted.

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.

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.

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

#37

Post by LanceH »

chasing wrote: post #26

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.

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

#39

Post by Angostura »

lizzard wrote: post #32

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…

> 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.

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