No, it belonged to the hospital where I worked. It would have looked more than a little weird if I had wanted a copy.
For those of you who haven’t been lucky enough, it is an educational video about sex after spinal cord injury. However, interspersed with several-minute-long clips of couples having sex. As in really having sex. One couple is a guy with paraplegia and a woman with spina bifida. She is very…bendy.
As a psychologist, I was torn about the video. The information was great. It was very encouraging about sex after SCI, and had good practical information and was very positive. On the other hand, some newly-injured folks weren’t ready to see damaged bodies having sex, which is how they saw it–not people with damaged bodies having sex.
I didn’t suggest that, but here are the key points that I think an average person would most benefit from knowing:
How you commute over long distances (i.e., someone else drives you in a specially designed van)
How you communicate (you can talk, obviously, but the systems you use to type and talk on the phone)
How you eat (an aide assists you)
The need to be shifted frequently to avoid pressure sores
I forget the term you used, but that thing that happens when you feel a sense of panic or your blood pressure rises to alert you that something’s not right with your body.
It would assure the person that lots of the stuff they can do, you can do using modified equipment/techniques, and perhaps alert them to the unique hazards or things to be aware of as a result.
Finally, it would include how you got injured in the first place, because I suspect an awful lot of people who meet you don’t ask for fear of seeming rude, but are terribly curious.
I haven’t made it any farther into the thread yet, so if this has already been answered I will find it – or if you don’t wish to answer, that’s fine. But I’m wondering if thinking about sexy things will make you lubricate, or if that requires physical stimulation to trigger it? Do the nerves for orgasm, which bypass the spinal column so that you can still achieve it mentally, work the other way around so that mental erotic stimulation causes lubrication?
I wish your pamphlet would guide those of us who are inexperienced in what are the proper manners when meeting a quadriplegic. How do I know whether to try to shake your hand, or when it is OK to touch you, or when and how to offer help, or anything else you observe we don’t get? You did say many of these things in your post, but a pamphlet that was generally available out there would be nice. I’m not put off by the prospect of being with somebody in a wheelchair but am very shy about offending people through my ignorance. I mean, I am familiar with and get body language clues from AB people, and I’m still shy about misreading their cues. Social misstep fears are the bane of many an otherwise likeable introvert. We could really use the expert guidance from somebody with sharper social skills!
While I can’t speak for Umkay or speak as a quadriplegic (I am a paraplegic), I can say that I only get offended when people are reluctant or unwilling to simply be themselves around me and not go to any lengths to do anything differently. I never get offended by genuine curiousity or wonder; it’s just the syrupy phoniness and perpetual ‘kid-gloves’ that gets me. You would ask an AB person if they needed help with something if it appeared that such help might be of valued assistance to that person; asking me such a question should have the same reasoning. I’ve (we’ve) been out in the world for a while now; if we need help with something, we’ll ask (and that is honest-to-goodness true, I ask for help all the time).
I still feel like a lazy, good-for-nothing when I ask a friend to carry my scooter up some steps or something. They say “shut up, no problem” all the time.
All this is new to me. I will be in my chair any day now. Thank all for explaining everything.
Here’s the deal: My helpers can’t do something illegal for me. They also can’t do something where the rational and immediate consequence to me is serious harm or death–they would (and should) balk if I told them, for instance, to throw me into the pool. That’s because those actions have legal ramifications for them.
But helping me to my 7th drink? Is it a good idea? Mm, no. But is it obviously going to maim or kill me as a direct result? Also no. Not unless it’s my 7th drink in 7 minutes and I’m clearly on a suicide mission. But I wouldn’t ask my caregiver to do that anyway–that’s what friends are for. [Herein is a greater debate that I won’t touch right now: Do I have the same “right” to commit suicide that you do? As it stands now, the answer is “not really,” so that’s the perspective I’m answering from. Hey Bricker–you wanna start that thread? LOL].
IRL, I’ve never had a conflict with a carer over a task I’ve asked her to perform for me. As you said, I have an even bigger stake in my well-being than she does, and I’d like to continue living. At times, my caregivers will remind me to do pressure relief, and they don’t get the hairy eyeball (great term, that) for doing so. I say, “Oh! Thanks for reminding me!” But that’s in her realm of specialty, as a medical professional trained in caring for people with SCIs. She’s not a nutritionist, or my sponsor, or my mom. If she sticks to what she’s paid for, we won’t have any conflict.
Ah, you’re getting to know my style–gotta make that disclaimer.
Kids? I love kids. They have way less disability baggage than adults, and their questions are usually awesome as a result–“Can you drive that on the freeway? Can it fly? Can I try it?”
I never mind (respectful, supervised) children coming up to me and asking me questions. Of course, you as the parent need to gauge how the interaction is going. If it’s me they’re talking to, I’m totally going to engage them and have a nice chat. But not all people in chairs want to provide this public service. So read the room, knowing there’s no absolute right or wrong answer in this situation.
Well, if I were just being myself, and standing next to somebody whose face was much lower than mine, pretty soon I would kneel or something. It’s easier to hear that way. But somebody earlier asked about this. IIRC they said they would get down lower like they were talking to a child.
This mystified me, as if some odd new element unknown to me, possibly an offensive one, crept into the conversation. I don’t understand how getting down lower can be “like I’m talking to a child” as opposed to “like talking to a seated adult” or “like talking to somebody working in a trench”. I’m just thinking I’m getting my head closer to theirs, like it usually is in conversation. If there’s some other feeling in play, I just missed it, and I’m curious about it. So anybody that can enlighten me would be most welcome!
To gonzoron’s question–
I mentioned it earlier, but there’s a stereotype out there about kids raised by disabled parents: that they are intuitive, compassionate, high-achievers. I also mentioned that I think my twin brother (who was always a bit like this) developed these qualities even more after I got hurt. So, it’s not really the kid(s) I’d be worried about. Not that you implied that the child would suffer; just sayin’.
If anything, it would probably be me who would suffer a little. The rigors of pregnancy, labor, and delivery could kill me, of course. But even beyond that, child-rearing would probably be very difficult at times. Not just for the normal reasons that parenting is tough, but because I’m sure I’d feel frustrated at times, having to watch someone else do something mother-like for my kid. A nanny would certainly be a necessity, even post-potty-training, for monkey-bar-spotting and boo-boo-tending; while I’d gladly cede my role as mom to her in these instances, if it meant my kid got what he or she needed, I think there’d still be a sense of loss when it happened. I’d think, anyway. But who knows?
If it were totally up to me, I think I’d like one child. But it’s not totally up to me; my (alleged, future) partner has a say, as well. If I met a wonderful man who could handle my disability and all the work and frustration it entails, who didn’t want kids, I could definitely skip kids. Similarly, if this man wanted 2 kids, I would definitely give it the old college try (maybe adopting one or both, depending). My dating pool is already shallow enough–no use adding any further restrictions than my chair already imposes on me.
Nothing to contribute except to say I went through this whole thread in one go. It’s 4:25 AM now and I want to give you some sort of compliment, but I’m tired and “charming” is the only word that comes to mind. And “candid.” But I don’t think the latter’s a compliment. Hmm…
I guess I just wonder how I would go about distributing this pamphlet? I know you’re not the one who suggested it originally, but it seems really strange for me to meet someone and immediately give them a dossier on my life, for them to read up on and then report back. Ya know?
I need to point out that, though I “feel” orgasm mentally, I don’t “achieve” it that way. No amount of sexy thinking could make me orgasm; my thoughts can’t make it to my genitals. My brain is a beneficiary of the physical, hormonal changes that occur after orgasm, but it doesn’t play a role in the production of such. The main pathway that goes directly between the brain and the genitals has, in my case, been severed.
There are of course other connections, and I assume those are the pathways along which the sensations that I do get when I orgasm travel. I say “assume” because neither I nor my doctors nor any other SCI experts are exactly sure why or how completes like me can still orgasm. Something like half of women with SCIs can, though that also means that about half can’t (according to stats I’ve seen over the years with, I’m assuming, varying degrees of accuracy). It’s a little bit of a mystery.
However, even though I can sometimes orgasm, I never lubricate, not even if my thoughts are positively sizzling. Apparently, the brain plays a big role in lubrication, judging from an almost universal difficulty with this aspect of sexuality in spinal injured women. It’s not a big deal to me, personally. It’s just something my partner has to be aware of so that we can use artificial means.
Your post brings up an interesting point: Nobody wants to make an @ss of themselves. But, that’s life. Sometimes you say or do the wrong thing. If the disabled person you’re interacting with has absolutely no grace for you when you do it with clearly good intentions, then why would you want to be friends with that person anyway? You know?
Besides, even if I did make some sort of handy pamphlet, you’re still going to offend disabled people who don’t see things the way I do! That includes the preference stuff, but also the nuts-and-bolts: Maybe some quad doesn’t really want you to know about bowel programs and they’re annoyed that I’ve breached their “privacy” in that way. Chair users are still people (heck, most of us used to be AB), and that means that we are a diverse bunch. Not to mention, I can’t emphasize enough that no two SCIs are alike–a quad with the exact same injury level as me, but who is incomplete, would likely have a very different story from mine. And a different chair. And different assistive devices. Etc.
Do you get what I’m saying here? The only way to be sure you’ll never make a gaffe around a disabled person is to never interact with a disabled person. OTOH, the only way to truly know what a disabled person’s personal preferences are is to get to know them as a person and find that out in a natural way as the relationship progresses. Might you embarrass yourself or offend them along the way? Maybe. But that’s a risk you take with every relationship. And if you both can get past that, then you probably have the makings of a great friendship.
Of course, a little bit of elementary knowledge can’t hurt, and I hope this thread has helped in that regard.
As a techie with an email to a tech recruiter on my desktop, I think I can answer this from the other side. At least I can tell you my guess. (When I was a program manager at one very large tech company, I referred our recruiters as the “antipersonnel department”. ) I don’t think we ever got one decent match. We had to go to outside consultants. Recruiters are by definition amongst the most peoplely people persons out there. Your whole job is calling up people, emailing people, convincing people, meeting new people, maintaining fruitful contacts, etc. Those who go into recruiting seem to be extroverted by nature, and the field is full of people who developed their personal interaction skills at a young age.
Techies, meanwhile, are generally not. We’re mostly introverts by nature and developed mathematical and other technical skills at a young age. That’s why we’re techies. I’ve often been told that I am a great people person, for a physicist. It’s like being told your smart for a cheerleader. Left handed compliment? Right handed insult? To quote umkay, “Thanks?”
The upshot is, since the people who go into the fields are very different, very few tech recruiters seem to understand the fields they recruit for, at all. If I want a C++ programmer, I want a C++ programmer. Sometimes, a Java guy or an Objective C guy might do. Not a guy who took a VB class once. The tech recruiter who understands enough of the field they’re recruiting for to both understand what you’re looking for and have some idea of various recruits abilities is very, very rare. Well worth whatever they make. Since, umkay is quite successful, she is one of the few. Which makes me glad, 'cause I’m still crushing on her.
And, Ambivalid, you’d be surprised how easy it is to recognize people in narrow fields. Even if umkay’s field is broader than mine, and she lives in a bigger metro area, she needs to be careful. In this thread, I’ve posted maybe thrice, and anyone who knows me would recognize me from it. (Oh, the physicist with five kids? That’s SlowMind. I doubt there’s another in the country.) There can’t be many twenty something tech recruiters with 4 brothers, even in California, so any who know those four facts might figure out who she is.
My question. Have you thought of taking up astronomy? As practiced by one of my coworkers, it is a form of photography, with very patient, easily scheduled subjects, willing to work around your logistics issues. (The Venus transit brought this to mind.)
And, yeah, I’m still getting teary eyed over your family. I soooo hope we’ve done as good a job with our five as your parents have with you five. (Yeah, I can almost speak past tense. But, my oldest are younger than you, umkay, so it’s not like someone your father’s age is crushing on you.)
I can only speak for myself, but I personally don’t like it when people kneel to talk to me. But that’s because I’ve never really had someone do it in a way that didn’t signal “hey-there-little-buddy.” :smack: But maybe you can!
As for hearing each other better, unless I’m at a concert or a bar, I don’t have trouble hearing people who are standing, so it’s just not necessary, IMHO. Of course, if you have hearing problems, you can just say that that’s why you’re kneeling, and I will understand that we’re accommodating your disability, not mine.
And if it’s a lengthy conversation that you and I are having, and there’s a chair available, feel free to sit down to talk to me. I’m never offended by that.
Quite probably. I tend to do that and I DID say I’m weird that way.
OTOH, while I’ve always known how nice it is to be able to do something positive spontaneously (duh), it’s never really occurred to me that the ability to be an idiot at will is sort of a blessing too, but it kind of is, isn’t it? There’s a question for you that I bet you haven’t been asked - do you miss the ability to do something dumb, just because?
I swear, I’m not trying to focus on the negative, but missing the good stuff just seems obvious. Now you’re going to think I’m even stranger.
Bahahahahaha! I’d say “you’ll just have to click to find out,” but I think you’d end up insanely disappointed: It’s a 25-minute YouTube review of my voice software. Wah wah!
