My Quadriplegic Husband and Me
catapult.co
catapult.co
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 initially and then overwhelming realization of "This guy did all these?". But I've learnt to cope with these situations.
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 inconvenienced by my disability every time I have to ask other people to do things for me that requires the use of both hands.
Almost any disability comes with certain inconveniences that remind you everyday of what you either can't do or that takes you longer.
Iam glad that you've been able to do many things which people without disabilities find difficult to do; my statement is many disabled people get denied an opportunity to do it because of prejudices & cognitive biases.
"Time is an illusion, we are it's magicians"
the apostrophe is unnecessary, as "its" is possessive. Best of luck with your company!
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 of them are funny (they use gabapentin off label to treat premature ejaculation - so I had to explain that one to my GF early on), they also make me wooly mentally, it's not a bad feeling but I'm a bit of a space cadet for a while after they kick in.
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.
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).
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.
Colored woman? 2 levels of prejudice. Immigrant with an accent? Prejudice. Autistic? prejudice. Transgender? you guessed it - prejudice.
Maybe not the best choice of words
I often try to take it as if someone told me they have an exotic animal.
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.
No. I stutter, and I'm somewhat disabled due to that in my own eyes, in that I have to spend more mental effort to speak clearly than a normal person would or else my vocal apparatus collapses into a mess of bad feedback loops and I'm completely incomprehensible (and, sometimes, in a certain amount of pain).
Your platitude is a bit beyond the "You can do anything!" fluff, which I understand and agree with in that stutterers have gone on to have very productive careers in public-facing roles (James Earl Jones stuttered, as did the disgraced Nazi-sympathizing British king, etc.), and veers into the simply incorrect. My ability to express myself verbally is, by default, less than it should be. I can compensate for it, and I do, but I will not pretend nothing is wrong here.
Yes, my disability is not without difficulties -
I have a BMI of a child, with it I have to perform duties of several adults every day. I'm constantly in pain, much of my childhood were spent in hospitals for surgeries on my limb deformities (I underwent ilizarov ring fixation for 4 times, with 2 years completely immobile at different times); perhaps of which physical pain doesn't bother me anymore.
Coming back to my statement, yes I face constant physical difficulties. But every moment I spend thinking about it, I get closer to sitting in a corner of my house for rest of my life like thousands of other disabled persons in my country. It might be called a farce, that "I put up a display of nothing is wrong with me"; then again it might inspire a few to come out of a closet and put up a brave fight against prejudices.
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.
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?
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.
Please don't take this the wrong way, but have you ever been screened for Social Psychology disorders?
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?
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.
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.
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!
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 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.
Also read this https://medium.com/incerto/the-intellectual-yet-idiot-13211e...
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.
I'm not of the belief that religion is necessarily what made murder taboo, but self-reflective consciousness and sophisticated ethical systems (especially development of an understanding of the mutual self-interest of the "golden rule"[3]) would seem to be key factors.
[1] https://news.nationalgeographic.com/news/2010/06/100621-scie...
[2] https://www.newscientist.com/article/2119677-chimps-beat-up-...
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.
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 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 unrelated to sonograms and abortions, but had you quoted the line before it then it would in my opinion be more closely related.
I wonder if the opioid addiction & overdose epidemic is finally kicking people in the ass a bit and waking them up to the fact that their lack of empathy for addicts (not to mention people with chronic pain) is a major factor in the tens of thousands of deaths each year. When your attitude is “the only good addict is a dead addict” and you feel like addiction can never happen to you, it’s not as if you’re going to vote for spending on harm-reduction strategies—rehab, naloxone, keeping kratom legal, decriminalisation, whatever—even if they would actually work.
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.
And so shall it ever be. While you hold disdain for the thing itself, no word that you use for it will ever be acceptable for long.
See 'euphemism treadmill' at https://en.wikipedia.org/wiki/Euphemism#Evolution
I never heard of there being a card. I am taking you literally here, but maybe that is the wrong thing to do.
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 :)
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!
Your perspective shifts.
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?".
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.
And I think deep down we want that magic, the idea that things could be so different for us that we try to amplify differences beyond understanding and into caricature. It's hard to believe that if we were in a wheelchair, or carrying water every day past all the World Vision cameras, it would just be mundane for us. How's things, N'gatu? Oh, y'know, carrying water again. Same old grind.
It would be harmless enough, except that you really want to be firing on all cylinders against hardship and deprivation. These aren't problems that need wide-eyed mysticism or hand-wringing sympathy. They need pragmatism.
Why is someone in a wheelchair disabled? It's not because they can't walk, it's because they can't walk in a world that expects them to walk. If they went through a portal to nobody-has-working-legs-Earth, they'd fit right in. But of course, on that Earth stairs would never have been invented. The nobody-has-working-legs-Earth scientists would have been hard at it on wheels and ramps from day one.
Which isn't to say someone with legs would be just as disabled in that world or some nonsense like that. Legs are better than no legs. But also being able to fly or see infrared is better than being stuck here on the ground with nothing but the boring visible spectrum to watch. Without society as a reference, there's no disability, just degrees of ability. And more is still better.
So finally we come to enhancement. Technology enhances a paraplegic into a person with wheels for legs, the same way it enhances N'gatu into a person with a detachable water stomach, and the same way it enhances you into a person whose hydration comes through a vast external network of water arteries. There's nothing mystical about any of these examples; it's just ability being enhanced by technology.
So I think we could do a lot worse than just taking disability to mean "has the most to gain from technology". I mean, I'd gain a lot from a jetpack and infrared contact lenses, but if my quality of life could be significantly improved by an inclined plane, well, that sounds like the definition of an easy win.
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 something of the sort. Like other people are just their for your entertainment.
Don't get me wrong, I'd like to have a time machine and visit ancient China, but there's a severe disconnect if you think people should continue living a certain way to fulfill your stereotypes.
> 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.
http://www.ramps.org/free-ramps.htm
Perhaps it can help you get hooked up with a local organization.
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.
All I got was that some colleague (or her husband was it?) was feeling bad for the author. After that it was a lot of words & sentences, broken up into paragraphs. Couldn't get anything more than that.
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 to demand or require someone to change their way of doing business/practice for him — something very rare. He further explained those who want to go out of their way to accommodate him out of true appreciation for his business are people with true high moral standards and those are the people he would rather do business with.
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 mandated for many years now. While I commend your father for finding folks who respect him to do business with, I cannot agree that it is morally wrong to demand equal access. The American Civil Rights Act of 1964, and the 1990 Americans with Disabilities Act both exist because it was determined that equal access to public businesses and accommodations is a moral imperative, and a right even. I don't think the author is out of line for being frustrated that in 2017 it's still difficult to do something as benign as go out to eat with someone who uses a wheelchair.
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.