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My Quadriplegic Husband and Me

catapult.co

41–50 of 88 posts

Re: My Quadriplegic Husband and Me

#41
post #37
post #16

I feel like there's this weird preciousness fetish that comes up around hardship. "Oh, you poor thing! Life must be so difficult and interesting for you. Please, tell me about your struggles, preferably in 15-20 minutes while alternating personal anecdotes with general observations about society." I see this in how we think about disability, but also poorer countries, where the gold standard is the noble African trib…

>poorer countries, where the gold standard is the noble African tribeswoman, carrying water for her family, living in a hut, eating soup made of sticks or whatever. Shame she has a cellphone and wears a t-shirt. It kinda ruins the magic. I've traveled quite a bit in recent years, and there are quite a lot of fellow travelers who express something like this. Oh it's so sad that we can't see the REAL China anymore. Or…

I was going to comment on that statement as well.

> I see this in how we think about disability, but also poorer countries, where the gold standard is the noble African tribeswoman, carrying water for her family, living in a hut, eating soup made of sticks or whatever. Shame she has a cellphone and wears a t-shirt. It kinda ruins the magic.

I lived in the Philippines for over a year and my first sixth months I lived in a pretty rural area where most people had dirt floors and bamboo/cinder-block houses. I believe some of them had cell phones but not all of them.

The interesting thing about the above quote to me is that though people live in such humble circumstances that doesn’t necessarily make life more miserable for them then for you and I. Some of those people I met in those circumstances were very happy people. They may not have the same things, but the things they have like family they hold dear.

On a tangent, I think the principle behind the article’s solution (basically that we should not pity and should help by building ramps) is the difference between empathy and sympathy. Like it was stated earlier in the comments we need to put ourselves in other people’s shoes and see if they have any problems with their situation. Once you know and they know you know there is a problem then you can go about expressing your concern for them or providing a solution. The problem with just giving pity outright is shown in the article.

Re: My Quadriplegic Husband and Me

#42
post #40

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…

My first boss was a dwarf. She was a force of nature, one of the most powerful personalities I've ever come across. We didn't always see eye to eye, but she ended up running the department and deservedly so.

> We didn't always see eye to eye

Maybe not the best choice of words

Re: My Quadriplegic Husband and Me

#43
post #40

Earlier quoted context omitted.

My first boss was a dwarf. She was a force of nature, one of the most powerful personalities I've ever come across. We didn't always see eye to eye, but she ended up running the department and deservedly so.

> We didn't always see eye to eye Maybe not the best choice of words

Rather, interesting choice of words. Perhaps she was intimidating, I feel people do feel me intimidating; but I've never tried to be one. I think it's because, people expect less of a short person; they feel intimidated when what they see goes against their assumptions (or) on the other hand since we (dwarf) try so hard all our life to match our normal peers that; we end up doing better & intimidating a few.

Re: My Quadriplegic Husband and Me

#44

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…

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…

Not to mention, they fucked up the grammar and it doesn't even make sense. Unless they mean seeing your reflection in someone's cornea, which only happens in movies.

Re: My Quadriplegic Husband and Me

#45
post #2

I have a physically and mentally handicapped son and I have to agree with the author ... he leads a great life but it's different. The reality is that everyone's life is different to some degree (more or less).

Two autistic sons. Both are happy. I've gotten questions before about their future. I tell people that if they are as happy as they are now in the future, what does it matter what they do? I know people that apparently have a good job and good education and all that, and they aren't happy. Your perspective shifts.

I'm the youngest of four and two of my siblings are disabled - being by far the youngest I was kind of oblivious at the time what this meant for them and my parents. One thing I do remember from my parents was that my mother always asked me "are you happy?" - not was I successful, or how much money I was making but how happy I was.

Now that I am the parent of a 18 year old (and the stresses that come with that) I am repeatedly stuck by what an incredible amount of stress my parents must have been under and frankly, how well they coped. Now my own concern for my own son is very much "are you happy?".

Re: My Quadriplegic Husband and Me

#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 picking them up and putting them in the dishwasher, without use of any limbs ? I mean maybe their home is designed in such a way and it's the case but I don't see how ? He's up with the baby, great. Can he pick it up, change diapers and feed it ? Or will she have to come ?

I really don't know all these things and how it works, I'm not acquainted with anyone with disabilities, how do you want me to see further than all these limitations if you don't offer any insight of how they are absolutely "non factors" in your relationship and daily life.

Re: My Quadriplegic Husband and Me

#47
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 meant he couldn't get out there on his own. Turns out he made the right choice, because for his birthday his neighbors built him a small wood ramp so he could visit the balcony as he pleased.

Re: My Quadriplegic Husband and Me

#48
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?

Re: My Quadriplegic Husband and Me

#49

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…

Not to mention, they fucked up the grammar and it doesn't even make sense. Unless they mean seeing your reflection in someone's cornea, which only happens in movies.

Is there really value in mentioning that?

Re: My Quadriplegic Husband and Me

#50
post #49

Earlier quoted context omitted.

Not to mention, they fucked up the grammar and it doesn't even make sense. Unless they mean seeing your reflection in someone's cornea, which only happens in movies.

Is there really value in mentioning that?

No but I found it funny
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