
My Quadriplegic Husband and Me - mooreds
https://catapult.co/stories/what-the-world-gets-wrong-about-my-quadriplegic-husband-and-me
======
Abishek_Muthian
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 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.

~~~
scarface74
_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.

~~~
noir_lord
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 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.

~~~
coldtea
> _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).

~~~
noir_lord
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.

------
hycaria
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.

~~~
writer618
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.

~~~
DennisP
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.

------
DoreenMichele
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.

~~~
zaptheimpaler
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.

~~~
urahara
Exactly. This is a problem of lack of imagination and empathy. How do you
think it can be fixed in mass? I think we need mechanisms that make people
understand experiences of disadvantaged groups. Like maybe some VR app showing
their reality + some laws that those who deny other groups problems must use
it.

~~~
hammock
>Like maybe some VR app showing their reality + some laws that those who deny
other groups problems must use it.

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.

~~~
johnsonjo
I think you made a nice addition to this discussion, but I think your comment
possibly would have gotten less downvotes had you quoted the line before that
one in the gp.

> 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.

~~~
humanrebar
I don't know. The example was clear to me.

------
feistypharit
Reminds me of some great graffiti I saw once: "get out and face your world".
It was doing to me, breached it's a one word change from the normal "get out
and face the world". But that one word change makes you realize it's one
world, but it's very different for each of us.

------
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](https://en.wikipedia.org/wiki/Stephen_Hawking)

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

~~~
fb03
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!

------
smoyer
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).

~~~
jasonlotito
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.

~~~
arethuza
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?".

~~~
smoyer
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!

------
sgentle
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 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.

~~~
carlmr
>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 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.

~~~
johnsonjo
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.

------
ademup
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.

~~~
wisemang
Just recently I learned about StopGap[0] after my neighbour attended a
fundraiser. The ramps.org mentioned in sibling comment looks pretty US-centric
but StopGap is based out of Toronto.

[0] [http://stopgap.ca/who-we-are/our-vision/](http://stopgap.ca/who-we-
are/our-vision/)

~~~
KozmoNau7
That's awesome. In many cases it's just a little thing, but it makes such a
huge difference.

------
aklemm
I've met a lot of people who with seemingly good intentions, are way too quick
to give pity.

------
siddharthdeswal
Did anyone else feel that this post was very difficult to read? I'm not being
insensitive. I haven't really understood what the author was saying in this
post.

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.

------
adam-seeliger
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 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.

~~~
sudosteph
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 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.

~~~
passw0rd
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.

