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My Quadriplegic Husband and Me

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Re: My Quadriplegic Husband and Me

#71

Post by coldtea »

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…

>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.

To strangers that might not understand (or take multiple meetings to see that's not a problem), it might be better not to tell at all. For people one actually know mid/long term, it's easier to be open without the prejudice.

(This sounds very House MD).

Re: My Quadriplegic Husband and Me

#72

Post by passw0rd »

adam-seeliger wrote: post #4

I’m sorry the author feels this way. I can’t help to feel that she’s trying to draw sympathy to herself. That is very sad, that is stress she doesn’t need. My father was a paraplegic due to a military injury. Growing up he was a great role model because it never slowed him down. He has never expected, nor demanded anyone accommodate him. I always wondered why. I finally asked him. He explained that it’s morally wrong…

"Sorry she feels that way." What way? That we don't need your pity or sympathy, just a ramp? That's the only point she makes. I really don't understand your comment; it seems like you commented without reading the article.

Re: My Quadriplegic Husband and Me

#73

Post by noir_lord »

coldtea wrote: post #71
noir_lord wrote: post #35

Earlier quoted context omitted.

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…

> 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. To strangers that might not understand (or take multiple meetings to see that's not a problem), it might be better not to tell at all. For people one actually know mid/long term, it's easier to be open without the prejudice. (This sounds very House MD).

The my prognosis is good, the pain is mild to severe but with medication mostly under control.

It doesn't actually impair me physically but the pain makes me not want to move, sometimes it's just gritting my teeth and getting it done.

Given the rareness and potential severity I got off damn lucky, I have to remember that occasionally.

Re: My Quadriplegic Husband and Me

#74

Post by passw0rd »

sudosteph wrote: post #10
adam-seeliger wrote: post #4

I’m sorry the author feels this way. I can’t help to feel that she’s trying to draw sympathy to herself. That is very sad, that is stress she doesn’t need. My father was a paraplegic due to a military injury. Growing up he was a great role model because it never slowed him down. He has never expected, nor demanded anyone accommodate him. I always wondered why. I finally asked him. He explained that it’s morally wrong…

Did you actually read the link? Seems like she very specifically wants to draw LESS sympathy for herself, at least over this. From her description, her husband doesn't seem keen on letting his disability slow him down or prevent him from living life either. As far as the demanding accommodations go, I think ramped entrances and handicapped parking spots are pretty reasonable standards, ones which have been legally ma…

adam-seeliger deleted a comment it appears, but I'll respond to what was there anyway.

No, I'm not embarrassed that my wife wrote this -- it's brilliant writing. No, I'm not embarrassed that she "aired our private lives in public." She didn't. Why would I be embarrassed that my wife writes about my spinal cord injury? Sounds like maybe your father was ashamed of his paraplegia, in which case I'm sorry he felt that way. That is why we need articles like this and more ramps, so people like your father don't feel ashamed of their disabilities.

Re: My Quadriplegic Husband and Me

#75

Post by agarden »

writer618 wrote: post #68
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…

Hi! I am the writer of this piece. To answer your questions: Your use of the phrase "without use of any limbs" is the problem here. That is not what quadriplegic means. It means that all limbs are affected and at least partially paralyzed by a spinal cord injury, or other injury/illness. My husband's injury level is C 5/6, which is a fairly mid-level injury- higher in the spinal cord than many and lower than others.…

That makes everything make so much more sense. I was a paraplegic for a short period. In my case, I had virtually zero feeling below my chest (T5) and no ability to move any of it. I, too, thought quadriplegic meant no function in any limbs. There is a huge difference between no motor control and reduced motor control, and between no sensation and some.

If a woman told me her husband was quadriplegic and I still thought that meant zero sensation and no motor control, I could not help feeling pity. I know what that's like. It's awful. And while I know that doesn't mean the marriage is comfortless, I do know that it makes things very, very hard. But once you say that he has motor control and sensation - well, that's a completely different ball game. Pity is no longer my reflexive response. Now you are just a person with a different set of challenges in your life than most, and a different set of joys to complement them.

Great to hear that you and your husband are doing well. Glad I learned today that quadriplegia doesn't mean what I thought it does. Best of luck!

Re: My Quadriplegic Husband and Me

#76

Post by spoovy »

ianai wrote: post #32
DoreenMichele wrote: post #5

TLDR: "Hell is other people." I wish I had more to add. I don't. No one in my family is quadriplegic, but we all three have special needs . Special is the new retard. As the author so eloquently describes, so many people see that and only that and erase everything else about you.

My mom has psoriasis. It’s no disability and I’m not making any indication toward that here. I grew up with strangers treating my mom like a lepper. We would be asked if she was contagious. Simple interactions like paying for goods at the grocery store became awful confrontations. There’s exactly one correct way to treat everyone in the world and prejudicially is not it.

I have psoriasis too and was interested to find out that many years ago people thought psoriasis literlly was leprosy, and people like me were forced to ring a bell constantly to warn others of our presence. That or be forced to live in a leper colony and presumably then catch and die of leprosy. Thank the lord for education.

Re: My Quadriplegic Husband and Me

#77

Post by jackhack »

midgetjones wrote: post #42
simonh wrote: 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

A Freudian choice, perhaps. As we are busy thinking about things we cannot/should not say, that hidden watchdog finds a way to influence our visible behaviors and choices.

Re: My Quadriplegic Husband and Me

#78

Post by zaptheimpaler »

adrianN wrote: post #36
zaptheimpaler wrote: post #25

Earlier quoted context omitted.

Find a citation yourself if it bothers you. Or you know, try to understand what im saying rather than nitpicking, pick another example like widespread racism and genocide which was once common and now isnt. Also read this https://medium.com/incerto/the-intellectual-yet-idiot-13211e...

If you claim something like "society is a tool to change people" you should provide some argument to convince people. Since this is just an Internet forum, it doesn't have to be a double blind study, but claiming that murder was okay before religion just seems wrong to me. I could equally claim that society is just a natural result of people living together and being forced to share resources and does exactly nothing…

I listed more examples above, such as how racism and discrimination were once widely accepted. I don't think I need to provide a citation for basic facts such as claims of racial/genetic superiority in the era of Hitler, or historical beliefs that white people were inherently superior to dark-skinned people for hundreds of years, of how ordinary people had no qualms in keeping "sub-human" blacks as slaves.. this is all extremely common knowledge to the point where citing it would be like citing "the earth is round-ish".

I think if you take a charitable interpretation of what I'm saying as a basis for discussion and try to find things that SUPPORT the statements truth rather than counterexamples, you would see them and understand my argument. I really don't believe taking a purely adversarial stance and poking holes instead of attempting to first understand contributes the discussion usefully.

Re: My Quadriplegic Husband and Me

#79

Post by jackhack »

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…

Your understanding of social boundaries, social cues, and personal space (and the lack of respect for this) is very unusual. Others have a right to privacy, and what you attribute as malice could be due to shame, embarrassment, fear, or a host of other reasons. These are their own, and they deserve this. The way you personalize a lack of sharing aligns is not typical.

Please don't take this the wrong way, but have you ever been screened for Social Psychology disorders?

Re: My Quadriplegic Husband and Me

#80

Post by csomar »

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…

Let's get real: You are not a disabled person. You just don't look like the average person which makes people think you are disabled. But people think wrong all the time; and this should never be an issue.

A disabled person is that, by definition. He can't do the task because of his disability. So he can't get things done unlike you. If you are in the digital space, can move reasonably well, can type and use the mouse, and your brain functions are not altered; I don't see why you won't be able to compete with the average person.

In fact, I'd say it is the opposite. The average person is disabled by everyday life distractions. Like dating for example. Or traveling around. I can see someone in a chair performing better than them. You can get a lot done via internet. Like emails, paying invoices, setting up stuff, etc... You don't need to move much if you are building a SaaS.

The disabled guy will be sticked to the chair with no access to the rest of the world "entertainment". Their best entertainment is to carry on work.

PS: Please bear in mind that I'm generalizing this and not targeting you. I don't know your lifestyle neither it is the issue of this comment.

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