Ask a physically disabled guy

[robvalue]

I'm very sorry for all you've been through

[Brian37]

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.

---

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.

Able bodied or disabled, I hate gender rolls. If you are being cared for, by someone else, it is your business and the person taking care of you. What matters is you have that stability, not who does what. If you are not a criminal and you are not draining someone, then who cares. 

But as far as joking about anything, that too is between the people using the joke and their comfort level. I am no fan of political correctness. I joke about being an atheist and call other atheists kitten barbecuers and say "you're going to burn in hell". I think it is perfectly ok to have inside jokes. 

[c172]

Good points, but in certain contexts, one has to make reference to their...whatever...."minority type". If there is a conversation about race, is a black person going to want to use "black" or "African American"?...etc. Sure, stuff like that shouldn't come up when you're just walking/rolling down the boardwalk windowshopping surf shops, or sitting at home with the significant other watching The Notebook, or whatever. It's irrelevant then.

[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.

Haven't you ever met any "Real Christians" TM that could cure you with prayer? I mean just how many demons do you have?

No.  Thankfully, New Hampshire doesn't have a lot of evangelical types.  Most theists around here are smart enough to know that things like this can't be cured through their voodoo.

And I carry a shitload of demons.  They're officially a posse.  They cause me to be caustically sarcastic and write really bad poetry.

---

But, yeah.  There's nothing good about being disabled.  The whole "appreciating life more" sentiment that's been popularized and romanticized is nice and all, but I'd trade whatever perspective I may have gained by being disabled for the ability to take a piss by myself.

That sounds to me mindbogglingly stupid, to say that one appreciates life more because one is disabled.  I know I did not appreciate life more when I had a sprained ankle, and I am pretty sure I would have a more dim view of life if I had a permanent disability.  And given your statement about being happy about 90% of the time, but that the "other 10% can get pretty damn black," that sure does not sound like you appreciate life more.  I think I would be fucking livid if I were disabled and someone told me I appreciated life more because of my disability or some such thing.

The woman I know who had polio has not had a good life.  She has made the best of it, but I am pretty sure she would be happier if she had never contracted polio.  Her disability has prevented her from doing many things that she wanted to do (obviously!).  Certainly, if there were a magic cure for her now, she would be happier than she is at present.

She has preferred the way children react to her, asking her honest questions, than the weird way that some adults have reacted to her.

God, that must be galling.  It would make me want to be able to just whack them up side the head.

The worst are the people who act like I'm mentally disabled. You know, the kinds of people who lean down to my eye level, maintain constant, blankly staring eye contact, and speak in loud, slow, single syllable words. Those are the people who are lucky I can't get out of my chair.

---

I'm very sorry for all you've been through

Thanks.  It's not a huge deal most days.  I just deal with it without thinking about it because it's who I am.  My biggest existential crisis right now is a complete lack of love life.  I had one girlfriend at the end of high school/beginning of college.  After that, there were two other people I fell for, but one was engaged, and the other was coming off a break up and I didn't want to be a temporary rebound.  None of the others I met could compare to them, especially not to the standards set by my ex.

I'm actually friends with her again.  It takes a lot for me to open up emotionally to people.  I'm very guarded when it comes to the really real stuff.  We had been Facebook friends for a bit, but I didn't actually reach out to talk to her again until a couple years ago because I was afraid she'd reject me again (not that the breakup was entirely her fault... I was an idiot in a lot of ways).  But she didn't, and we both kind of aired out our dirty laundry and apologized to each other.  

Unfortunately for me, I'm still kind of in love with her, while she's been with her guy for 15 years.  So, things are very bittersweet on my end.  I'd rather have her in my life in this capacity than not at all, so it's a net positive, even if unrequited love sucks.

[c172]

I tend to draw what I think is a lot of holy rollers, with their pamphlets and lectures and whatever. It would be interesting being at an AF get together and see if that same pattern continues, and see if able-bodied AF's notice an increase in such people when being around me or M1 or whoever else is disabled on here.

[KevinM1]

We need to make bumper stickers that say "UNholy rollers"

[c172]

<---Unholy Crutcher?