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

bbc.co.uk

21–30 of 72 posts

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

#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.

https://www.theatlantic.com/technology/archive/2013/04/googl...

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

#22
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…

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?

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

#24
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.

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

#25
post #24
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 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.

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

#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...

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

#27
post #24
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.

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.

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

#28
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 haven't check the wording of the diversity initiatives. I am just observing that there are no people with physical disabilities in the building.

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

#29
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.

Often its the hidden disabilities that get overlooked.

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

#30
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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