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My Quadriplegic Husband and Me

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Re: My Quadriplegic Husband and Me

#51

Post by hycaria »

salvar wrote: post #48
hycaria wrote: post #46

I am rather disappointed that she chose not to describe anything and just whine over prejudices she's visibly not in the mood to take down. I understand not wanting to draw any sympathy over this and not to be pitied, not to be seen as a caretaker or whatever, but she also needs to understand that it's NOT most people daily lives and we can't imagine what it looks like. So yeah, this whole dishes thing. Is he really…

I think her point is you can ask for information and be curious without assuming that pity and "Oh I'm so sorry for your lot in life" are appropriate. How curious are you really if you've already assumed all that?

Fair point. I have absolutely no hesitation to ask questions about people's conditions actually (although I try not to force any answers, yet I really have a strong aversion for "private" people, this is a trait that annoys me to no end), so that would probably be my first reaction, but I get that most people consider it impolite.

Re: My Quadriplegic Husband and Me

#52

Post by KozmoNau7 »

lancebeet wrote: post #47
ademup wrote: post #3

Great read. Is there anyone out there with suggestions on how to go about 'just' building ramps? I would do this all over the place, giving time and labor: but I don't want to also give the time needed for all of the back-and-forth.

Slightly related personal experience: A guy who went to my university was disabled (required a motorized wheelchair), but wanted to live in the university dormitories with others instead of having to live alone in a special apartment that would have been arranged for him. There were elevators and he was able to do most tasks by himself, but unfortunately to get out onto the balcony there was a drop of ~10cm which mea…

Damn straight. We should by all means avoid putting people with disabilities in "special housing", which just ends up feeling like isolation from everyday life.

Of course, some disabilities are serious enough (or present danger to the person or their surroundings) that special housing and resources are needed. But for someone in a wheelchair or something similar? Just make the damn changes so they can live closer to their friends.

Re: My Quadriplegic Husband and Me

#53

Post by KozmoNau7 »

wisemang wrote: post #8
ademup wrote: post #3

Great read. Is there anyone out there with suggestions on how to go about 'just' building ramps? I would do this all over the place, giving time and labor: but I don't want to also give the time needed for all of the back-and-forth.

Just recently I learned about StopGap[0] after my neighbour attended a fundraiser. The ramps.org mentioned in sibling comment looks pretty US-centric but StopGap is based out of Toronto. [0] http://stopgap.ca/who-we-are/our-vision/

That's awesome. In many cases it's just a little thing, but it makes such a huge difference.

Re: My Quadriplegic Husband and Me

#54

Post by scotty79 »

noir_lord wrote: post #35
scarface74 wrote: post #21

Earlier quoted context omitted.

Always remember, a disabled person see's themselves as disabled only in the eyes of the people with prejudices. I really hate these aphorisms. I have a mild disability - I have cerebral palsy that affects mostly my left hand and to minor degree my left foot. While I've done a lot of things that most people haven't done - run half marathons, was a part time fitness instructor for over a decade, etc., I know I'm inconv…

Agreed I have syringomyelia which causes intense pain and on a bad day I limp (imagine walking with your leg encased in water close to boiling point). On a good day you can't tell. I still cycle and swim and am in better than average physical shape for 37 but as soon as I tell someone it all becomes about my (mild) disability. The drugs work and I live a normal life but they come with significant side effects. Some o…

> ... but as soon as I tell someone it all becomes about my (mild) disability.

People are horrible at interacting with their acquaintances or even friends (except for closest ones).

When they meet a friend they look at him and think, "what the hell I'm supposed to say to this guy", then they remember that he wanted to buy a house, great!, now they can talk to them about that ... he already bought a house, great they still can talk about the house, but after a year or so this topic gets stale.

If someone broke a leg, they can talk about the leg, but then the leg heals up and what do you gonna talk about then...

You are very pleasant conversation partner for them because they always know what to ask you about. Don't get mad at them. The reason they bring this up every conversation is not about your specific problem, it's about general human problem of not knowing what to say to another human.

Re: My Quadriplegic Husband and Me

#55

Post by scalesolved »

hycaria wrote: post #51
salvar wrote: post #48

Earlier quoted context omitted.

I think her point is you can ask for information and be curious without assuming that pity and "Oh I'm so sorry for your lot in life" are appropriate. How curious are you really if you've already assumed all that?

Fair point. I have absolutely no hesitation to ask questions about people's conditions actually (although I try not to force any answers, yet I really have a strong aversion for "private" people, this is a trait that annoys me to no end), so that would probably be my first reaction, but I get that most people consider it impolite.

As a disabled person I find this perspective incredibly odd. Why have no hesitation?

I find most people will ask about my disability when I'm doing something that is not affected by it all, they'll start with the 'hope you're not offended but I'm curious, how would you do X?'. This is usually followed by them telling me of a disabled person they know that has a totally different condition but is inspiring.

If you have a strong aversion to private people perhaps you should not ask such personal questions?

Re: My Quadriplegic Husband and Me

#56

Post by k__ »

Abishek_Muthian wrote: post #14

The prejudices which a disabled person faces or their partner in this case are humongous. I'm a dwarf with limb deformities, as CEO of a startup I perform the role of at-least dozen able-bodied people of my age each day. Still, since people who I haven't met personally don't know I'm a dwarf expect a 6ft Suite clad man at the business meeting; at the meeting I can see the sense of disappointment when they see me init…

I think it's really hard to find out how people want you to react.

I often try to take it as if someone told me they have an exotic animal.

Re: My Quadriplegic Husband and Me

#57

Post by humanrebar »

johnsonjo wrote: post #38
hammock wrote: post #22

Earlier quoted context omitted.

>Like maybe some VR app showing their reality + some laws that those who deny other groups problems must use it. Texas has this for abortions. The law requires that a woman get a sonogram from the doctor who will be performing the procedure at least 24 hours beforehand, during which the doctor must display sonogram images and make the heartbeat audible to the mother. It's controversial.

I think you made a nice addition to this discussion, but I think your comment possibly would have gotten less downvotes had you quoted the line before that one in the gp. > I think we need mechanisms that make people understand experiences of disadvantaged groups. Where the disadvantaged group you mention is the baby. I only say that it might help, because the part you quoted about VR seems almost completely unrelate…

I don't know. The example was clear to me.

Re: My Quadriplegic Husband and Me

#59

Post by hycaria »

scalesolved wrote: post #55
hycaria wrote: post #51

Earlier quoted context omitted.

Fair point. I have absolutely no hesitation to ask questions about people's conditions actually (although I try not to force any answers, yet I really have a strong aversion for "private" people, this is a trait that annoys me to no end), so that would probably be my first reaction, but I get that most people consider it impolite.

As a disabled person I find this perspective incredibly odd. Why have no hesitation? I find most people will ask about my disability when I'm doing something that is not affected by it all, they'll start with the 'hope you're not offended but I'm curious, how would you do X?'. This is usually followed by them telling me of a disabled person they know that has a totally different condition but is inspiring. If you hav…

Because if you don't ask you won't have an answer ? If I am legitimately curious, why shouldn't I ask ?

Also I didn't say I mind to have someone refuse to answer. Just that they go straight to the pile of people I dislike. I mean this comes of course in all variations, but people who get directly offended by questions or come up with that sweet smile and pseudoapologetic answer as to why they don't want to share this thing yada yada are just not interesting to me.

I show some interest in you and your perspectives about the world (I think I can proudly say I do come up with good questions and genuine interest, and I globally shine at asking questions, am not an obsessive one upper and remember people's life which makes it easy to get them to share) and all you can offer me for it is not wanting to share as if it was some kind of secret ? I don't get it, I mean, I do actually, but this is so dumb to me. We're all the same species sharing the same world why does it matter so much to block people from getting to know YOU?

It's actually rather rare tbh, but I know a few people like that (not even talking about disabilities here, but being overly private about objectively trivial stuff) and I strongly dislike it. Which is actually not a problem, as I said, I know I can directly stop pursuing any interaction with that person as we obviously don't have the same perspective about human relationships and willingness in this relationship.

Re: My Quadriplegic Husband and Me

#60

Post by [deleted] »

hycaria wrote: post #59
scalesolved wrote: post #55

Earlier quoted context omitted.

As a disabled person I find this perspective incredibly odd. Why have no hesitation? I find most people will ask about my disability when I'm doing something that is not affected by it all, they'll start with the 'hope you're not offended but I'm curious, how would you do X?'. This is usually followed by them telling me of a disabled person they know that has a totally different condition but is inspiring. If you hav…

Because if you don't ask you won't have an answer ? If I am legitimately curious, why shouldn't I ask ? Also I didn't say I mind to have someone refuse to answer. Just that they go straight to the pile of people I dislike. I mean this comes of course in all variations, but people who get directly offended by questions or come up with that sweet smile and pseudoapologetic answer as to why they don't want to share this…

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