Ask a physically disabled guy

[KevinM1]

I was born with Arthrogryposis Multiplex Congenita.  I've had ~43 or so surgeries, most of them when I was a kid, and most of them osteotomies.

So, ask me shit.  Or don't.  Whatever, it's cool.

[Pyrrho]

Son of a bitch, that sounds awful. So, what is your life like?

[c172]

How do you feel about "PWD" or other terms to describe us?

[KevinM1]

Son of bitch, that sounds awful.  So, what is your life like?

I have ups and downs.  Currently fighting a UTI, so yay, I guess.

In general, I need help with all activities of daily living.  I use an electric wheelchair for mobility.  I can't transfer from my bed to my chair myself, or clothe/feed (in terms of cooking... once something is made, I can eat with a fork or spoon)/bathe/go to the bathroom myself.  I have chronic pressure sores on my butt because I can't sit at a straight 90 degrees, so as I slide, the pressure and shearing cause issues.  It's not too bad now - nothing open and bleeding - but it doesn't take much for it to go south.

I live at home with my retired mother.  She can provide me better care than visiting nurses or a nursing home, and we have all the equipment here, anyway.  Kinda puts a damper on any relationship, though.  "Hey, babe, come back to my place and meet my mom" isn't much of a pickup line.

I work from home as a web developer.  An actual programmer, not one of those "Let's upload WordPress, install a theme, and call it a day" people.  I suck at design and front end development, even with things like Bootstrap.  But, I'm working on it.  My arms and hands work good enough to type at ~30 or so WPM, so at there's that.

I don't go out much because I can't drive myself anywhere, and there's always that chaperone presence, which is frustrating.  A lot of the stuff I'd like to do my family isn't into, and outside of my mother, they all have limited time anyway with their work and family.  So, a lot of my time is spent on the computer working, visiting forums, talking to friends on Facebook, that sort of thing.

Hehe, that probably sounds more miserable than it actually is.  I'm pretty chill and happy about 90% of the time.  That other 10% can get pretty damn black, though.

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How do you feel about "PWD" or other terms to describe us?

I tend to refer to myself as simply disabled.  PWD doesn't really bother me.  It steers a bit close to political correctness, but whatever.  'Handicapped' is a bit weird for me.  That's the term I grew up with, but it just feels a bit uncomfortable.  I can't put my finger on it.  I use 'cripple' like my version of the n-word.  I only let people I know and trust say it, and only in an obvious ironic or humorous context.  Fun story:

When I was a student at UNH, my friend Adam and I had physics together.  Adam and I went to high school together, and had known each other for years even before taking that class, and we always joked around.  Our mission in life was to go around campus and just rag on each other to get a rise out of other people.  We knew we weren't being serious, but no one else did.  So, one day, while we were waiting for the physics lab TA to show up and unlock the door, we decided to start our routine.

"Fuck you cripple.  I'm going to put you in an even bigger wheelchair."
"I'd like to see you try, you cocksucking hippie."
etc.

The next day, in physics lecture, the professor started the class by warning everyone about harassment, and how if it happened again, the students involved may be expelled, blah blah blah.  As he's saying this, Adam and I are looking at each other and laughing our asses off.  Naturally, we tried doing it again at the start of the next lab, but apparently everyone else caught on and nothing more came out of it.

[Pyrrho]

It does sound pretty miserable, but I pretty much expected that from doing a quick look-up of the things you mentioned in your opening post. Hence, my first sentence in my first post in this thread.

Are there any interesting museums or art galleries or other such things that you can visit in your area? Are there any organizations in your area that can help you do some of the things you want to do, that your family does not want to do?

I almost don't want to ask this question, but do you at least have a nice view from your window? I have lived in many places, and have found a good view to be quite valuable if one is stuck at home.

[KevinM1]

It does sound pretty miserable, but I pretty much expected that from doing a quick look-up of the things you mentioned in your opening post.  Hence, my first sentence in my first post in this thread.

Are there any interesting museums or art galleries or other such things that you can visit in your area?  Are there any organizations in your area that can help you do some of the things you want to do, that your family does not want to do?

I almost don't want to ask this question, but do you at least have a nice view from your window?  I have lived in many places, and have found a good view to be quite valuable if one is stuck at home.

Eh, I live in rural NH, so most of the interesting things around here are at least 30 minutes or more away from me.  I wish Boston was closer.  I've been to the MFA once.  I could live there.  I've been to a few Sox and Bruins games.  Almost had an Angels player land in my lap (we had great on-field seats down the 1st base line, just near the tarp).  I'd like to go to the Museum of Science again.  I haven't been in nearly 20 years.

There aren't many organizations around here that could help.  I need a raised roof van, which is rare around here.  Plus my chair is kind of weird when it comes to being tied down. We own a van that has all that, but liability issues prevent others from driving it.

My view isn't bad.

I don't want to make it sound I never go anywhere.  My family does try to do a big vacation every 2-5 years.  We generally go out west, to the Yellowstone area, for 10-14 days.  I love it out there.

[c172]

Yeah, I grew up with "disabled" as well. "PWD" was a bit too PC when I first heard it, but now I'm actually used to it. Either is OK. "Cripple" or "gimp" is a definite no-no. But, we're all different. Each generation will have a new word for us.

My disability is spina bifida ("open spine" so to speak). Its wiki is here: http://en.wikipedia.org/wiki/Spina_bifida

[KevinM1]

Ah, yeah, 'gimp' is definitely an insult.

I should post the wiki to what I have. I have the amyoplasia variety: http://en.wikipedia.org/wiki/Arthrogryposis

[Pyrrho]

Yeah, I grew up with "disabled" as well. "PWD" was a bit too PC when I first heard it, but now I'm actually used to it. Either is OK. "Cripple" or "gimp" is a definite no-no. But, we're all different. Each generation will have a new word for us.

My disability is spina bifida ("open spine" so to speak). Its wiki is here: http://en.wikipedia.org/wiki/Spina_bifida

I know someone who had polio as a child.  (She got polio just a few months before the vaccine came out.)  She hates "differently abled," which she regards as bullshit, as it does not give her a different ability.  She is fine with being described as "crippled," because she is crippled and cannot walk properly.  She requires crutches to walk, and is not up for much of that.  "Gimp" is generally regarded as derogatory:

http://www.oxforddictionaries.com/defini...ctCode=all

But I do not know how she feels about being called a "cripple;" I just know she is fine with being described as "crippled."

Whatever word one uses for it, it sucks not to be able to walk properly.  My only experience with that (since infancy) is getting a sprained ankle once, and I did not care for not being able to get about very well.  But I was pretty sure that it was a temporary condition, which makes it very different from the other cases being discussed in this thread.

[BrianSoddingBoru4]

I have a comparatively minor disability (missing an eye).  Here's the question:

How do  you feel about the term 'differently abled'?

Boru