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Comment by hycaria | Hacker News Reader

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.

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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.

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.

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!

Thanks for the clarifications.

As you're not gonna change the way people and society understand quadriplegic, why not do yourself a favor and describe just a little bit more precisely the extend of his disabilities (or the definition of the word if you obviously see that the person takes it that you chose to marry someone with no use of any of his limbs), rather than just toss out such "scary" words and then take outrage when people assume the worst things out the vague terms you used.

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?

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.

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?

>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.

Did you read my post ? Where am I saying that they don't ? I tried to make as clear as possible that just as it's their own right, I have no interest in befriending or have further talking with people like that. Is that pathological?

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.

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