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My Quadriplegic Husband and Me

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Re: My Quadriplegic Husband and Me

#61

Post by smoyer »

arethuza wrote: post #45
jasonlotito wrote: post #11

Earlier quoted context omitted.

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…

When asks what I wanted my kids to be when they grew up I've always said "happy" too ... Life's too short to aim anywhere else!

Re: My Quadriplegic Husband and Me

#62

Post by mkzh »

She makes some great points. As a quadriplegic, I can definitely relate to

1. People expressing pity. This doesn't always need to be verbal, the look people give me is sometimes all it takes to remind me that I'm not "normal".

2. Being called "strong" or "brave". This is frustrating not because I think it's not a genuine compliment, but because it genuinely isn't true. I certainly don't consider myself an exceptionally inspirational person: I just try to live a normal life like any average schmuck in the upper-middle class in a first world country. I may have had the misfortune of being born with a disability, but in many ways I've been exceptionally lucky: born in a moderately wealthy family, academically nurtured by good teachers, granted an Ivy-league education as a result of good teachers, and given a comfortable career in BigSoftware as a result of said education. Nothing in my life is exceptionally off course from that of a pampered son -- aside from my lack of arm or leg function.

3. Restaurants and stores lying about their accessibility. This is a huge problem with review sites and often is a stark reminder that the world fundamentally wasn't designed for people like me from a UX perspective.

This article also captured a lot of my concerns with dating as a disabled person. I realize that any woman I get into a relationship with has to, in a way, endure my pains as a disabled person. That the pity, genuine-but-wrong compliments and the wrenching realization that the world is for the ambulatory easily spreads like a disease from me to the people that I love.

It's definitely frustrating. I am glad that she seems happy with her marriage for now though. As a quadriplegic, I know that we don't have a good track record for happy relationships, which has always been something that keeps me up at night. Steven Hawking [1] and Christy Brown [2] are two examples of quads I can think of who have been known to have less-than-fulfilling marriages.

I hope that I can do better, but for now I'll just focus on being a better software engineer so people have something else to look at besides my disability :)

[1] https://en.wikipedia.org/wiki/Stephen_Hawking

[2] https://en.wikipedia.org/wiki/Christy_Brown

Re: My Quadriplegic Husband and Me

#63

Post by fb03 »

mkzh wrote: post #62

She makes some great points. As a quadriplegic, I can definitely relate to 1. People expressing pity. This doesn't always need to be verbal, the look people give me is sometimes all it takes to remind me that I'm not "normal". 2. Being called "strong" or "brave". This is frustrating not because I think it's not a genuine compliment, but because it genuinely isn't true. I certainly don't consider myself an exceptional…

While I wholeheartedly agree to your points, and I feel it really is bad to focus on someone's disability when there's so much more there to inquiry about (a whole human with skills, stories, wisdom, successes, failures, interesting and differing points of view), I must offer a counterpoint:

In most humans, the different is intriguing, and while a disabled person has all of the same (and good and interesting) attributes I've listed above as all other people, they also have this extra bit of experience which is their disability and which most people don't have.

I am with you that you should be genuinely bummed at watered down compliments and empty shit like 'warrior', 'brave' and all that awkward stuff that just makes you the center of attention for no reason. In essence, We are ALL warriors and each day we win at making money, getting fed, and breathing is a victory and a blessing (another chance to do it again tomorrow, possibly better!).

But, please notice that some people are just specifically curious about how do you go about your day, how different it is to tackle the same challenges they have but with your perspective (people normally like to compare, so it's not gonna be different with you and it shouldn't if you wanna be level). So if you recognize an honest and genuinely curious person among those other in the crowd that are just bringing up your stuff because they have ran out of subjects to talk, well, telling them those tiny details of your life is a sure fire way to get past that awkwardness and condescending membrane and will bring you together in a deeper way than most watercooler conversations you've been caught up.

Have a good one, man!

Re: My Quadriplegic Husband and Me

#64

Post by QAPereo »

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…

Based on statements such as "depressive episodes" and such, it seems in this case more like people with complementary disabilities. His body struggles, her mind struggles, they can each support the others' "weakness" as it were. Maybe that's the key really, because they're both caretakers of the other.

Re: My Quadriplegic Husband and Me

#65

Post by gebeeson »

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.

'Special is the new retard.' Still to this very day, I refer to myself as a retard. It is truly what I grew up with and for me, over time, it has become a badge of honor of sorts. As a humorous aside, I also tell people that 'I used to be a card carrying retard.' After the looks of shock and dismay wear off, someone asks - 'No card anymore? Did you get 'better'?' - my reply is always - 'Nope, I ate it with some paste in kindergarten. It was delicious.' Never gets old for me.

Re: My Quadriplegic Husband and Me

#66

Post by gebeeson »

zaptheimpaler wrote: post #9
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.

It reminds me of privileged people who dont care about safety nets, rich people who dont care about high taxes, innocent people who couldnt care less about throwing weed dealers in jail for 10 years, healthy people who have no concern for healthcare costs... People lack the imagination to really put themselves in others shoes. They are shitty and cruel when they cant empathize. And they have little incentive to try.

From my point of view

They are shitty and cruel and don't want to empathize. And there is no incentive to try.

I could make this a Wall of Text just with observations alone. People; still a good time.

Re: My Quadriplegic Husband and Me

#67

Post by DoreenMichele »

gebeeson wrote: post #65
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.

'Special is the new retard.' Still to this very day, I refer to myself as a retard. It is truly what I grew up with and for me, over time, it has become a badge of honor of sorts. As a humorous aside, I also tell people that 'I used to be a card carrying retard.' After the looks of shock and dismay wear off, someone asks - 'No card anymore? Did you get 'better'?' - my reply is always - 'Nope, I ate it with some paste…

So, educate me here. Was that just for kids deemed to have low IQs or for any kind of learning disability or special needs?

I never heard of there being a card. I am taking you literally here, but maybe that is the wrong thing to do.

Re: My Quadriplegic Husband and Me

#68

Post by writer618 »

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. So every quad is going to do different things than others. My husband, for example, has full sensation all over his body. Many do not. However, he has no use of his fingers, while some do. He can, however, use his upper arms, and adaptive tools, which he has used to do everything you mention: changing diapers, feeding, picking her up and putting her down, and yes, the dishwasher, cooking meals, etc. I have left the baby with him overnight while I was away for work/at the hospital. It takes him a lot longer to change diapers, but about the same amount of time to put a bottle together. He drives (with special controls in a wheelchair van), etc. Many quads do.

There are already many resources--books, videos, myriad articles, etc.--that cover quadriplegia/how spinal cord injuries affect the body/quads and parenting, etc. This was a personal essay. I hope, if you're truly interested, you make use of some of those existing materials.

Re: My Quadriplegic Husband and Me

#69

Post by DennisP »

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.…

It sounds like this is the misconception that makes people respond the way they do. If you haven't tried this yet, maybe you'll find that your life improves if you take a moment to describe to your friends what quadriplegic really means. I personally have always assumed it meant "completely paralyzed and helpless."

You could even jumpstart it by saying he's "partially quadriplegic," which of course isn't technically correct but would give uninformed people like myself a better picture of your true situation, and an opening to ask what you mean by that.

Re: My Quadriplegic Husband and Me

#70

Post by writer618 »

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…

He would rather keep his full-time job with its handicapped parking. thankfully required by law, than wait around for someone to "go out of their way" to accommodate him out of the goodness of their heart. Also, I shudder to think what would happen if everyone waited around for grocery stores, gas stations, etc., to "go out of their way" to accommodate people. That would just keep people in their homes and on state support, which we thankfully don't need at all because of the laws about accommodation.
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