Wednesday, February 16, 2011

The Unexpectedly Inaccessible Vagina Monologues

In true outside of the box things that guys do to spend some time with a girl they like fashion I got talked into going to see a performance of “The Vagina Monologues” at Augsburg College in Minneapolis this past Sunday afternoon. “The Vagina Monologues” is a play created by Eve Ensler that is about female empowerment and individuality and is performed on Valentine’s Day in an effort to bring awareness to and end violence against women. Prior to that I had heard about it, seen small excerpts of it, and had a decent grasp of the gist of it, but it was something that I would have never considered checking out on my own, either in person or on video format, without some considerable coaxing—more likely than not in the from a pretty girl. Otherwise, my life would have seemingly carried on just fine without it. More than anything I figured that the subject matter by itself, let alone the the multiple recitations of the word vagina, would have me squirming uncomfortably in my seat. But, with the right kind of arm twisting, and me being game to try new things, I was soon all set to get my v-word on.

When going to any new venue for the first time questions of accessible parking, building access, and comfortable accessible seating inside immediately spring up. Since the campus music hall was quite literally a hop, skip, and a jump from my apartment building I scouted it out the day before while I was running errands. I quickly assessed that finding accessible parking was going to be an issue. One-way streets limited sidewalk parking options, nearby parking lots required campus parking permits, and most of the spots right by the building labeled for accessibility were “transfer only.” We could have just as easily walked/rolled there from my place but decided to drive and ended up parking “illegally” in a handicapped parking spot that required an Augsburg College permit, hoping they’d be lax about such violations on the weekend. (They were.)

As we approached the building I immediately discovered that there was no automatic accessible door opener, which is always annoying. Then worse, when we got inside the auditorium there was no wheelchair accessible seating. In those situations the three seating options are: 1) Sit all the way up at the front, which sucks because by the time you’re clear of the leg room of the people sitting in the front row you’re practically on the stage. My joke was that if we sat all the way up there that we would practically be able to smell the Vagina Monologues. 2) Sit in the aisles somewhere, but that was an extra challenge for us since there were two wheelchairs in our group of three. So not only would we have maybe blocked too much of the aisle, but one of us would have had to sit slightly separate from the group. 3) Sit at the very back, which in this case actually meant sitting behind the very back row. We decided on a hybrid seating formation by sitting in the back row but with both wheelchairs parked diagonally on each side of the aisle. What I found interesting was what a deterrent our partial aisle blockage created. Many people intending on going down our aisle to get to their seats would see us sitting there, stop dead, start going up the opposite aisle, and then all the way across rows of seats instead. It was an impromptu social experiment of sorts.

Now other than pointing out that some moron brought along her young child to such an adult show, and at one point let her run up and down the aisle making a slight racket (after a while she left the room, the door was closed behind her, and she didn’t return), that is the direction that I thought this post was going to go in. I thought that I was going to be taking the concept of building and auditorium inaccessibility, sprinkle in some past relatable experiences, and analyze the whole thing like I’ve done numerous times over in the past on this blog. Next thing I know, often to my own great surprise, I’ve banged out over a thousand words about the kinds of gloves I’ve worn in the past, or how I make mac and cheese, and wonder if I’m the only one who has found the material interesting. At the least, it’s a perpetual exercise of catharsis.

But all that changed shortly after the show began, when I found myself squirming awkwardly in my seat for a whole different and unexpected reason: out of nowhere I started feeling quite a bit sexually inadequate. The show itself is split almost equally between serious monologues of vagina related issues like female empowerment, loss of virginity, menstruation, birth, rape, etc. and more upbeat topics like alternative labels for vaginas, grooming, reclaiming the “c-word,” lesbian encounters, discussions about both hot and awkward sexual encounters, and demonstrations of various orgasm types. It was the more supercharged sexual stuff that spontaneously stoked some sexual self-consciousness in me.

To wit, in the show’s first segment all the ladies, the monologue-ers if you will, went over a variety of things that their vaginas would say if they could talk, and the sexual oratory included things like “yes,” “more,” “harder,” “faster,” “don’t stop,” “this way not that way,” “that’s the spot,” “yummy,” “yes, please,” “f—k me!,” “oh s—t!,” etc. Then later on in what was easily the most fun and entertaining segment of the performance one of the monologue-ers does a solid five minute, enthusiastic, and borderline graphic oral demonstration of the various types of female orgasms, and the applicable moans they induce, along with physical demonstrations of the multiple sexual positions that apply, such as the “rapid fire,” “the diva” (i.e. missionary position where one leg kicks straight up in the air at the magic point), “the barker,” the “triple-multiple Big O”, etc. Everyone in the audience went nuts, but much more so it was the ladies who were clapping, whistling, cheering, whooping, and hollering, with one catching the implied “O” spirit more than anyone and she yelled out, “Yeah, you go girl!” Presumably, plenty of the ladies in the audience were living momentarily, vicariously through the monologue-er and/or instantaneously fantasizing/reflecting on their own sexual experiences. Because really, what woman doesn’t want a marathon session with sexy sculpted gentlemen giving them “the diva”?

But I couldn’t help but sit there and think, “Well I can’t do that anymore, or that, or that…” and it was suddenly very sobering. Because when you are a spinal cord injury quadriplegic who is paralyzed from the chest down, having physical, full body, multi-positional, all over the room sexual activity is just not in the cards, despite the extreme want for it. Moreover, by definition of this disability there is a certain amount of sexual dysfunction involved as well. It’s disappointing, it’s frustrating, it’s difficult to deal with at times, etc., but it’s just another unfortunate aspect of this particular lifestyle. It is what it is.

Other than some very limited horsing around that I did with my then girlfriend in the hospital after my SCI, which is really hard to do when a hospital bed is involved and nurses and family can come in at any moment (i.e. frustrating!), my first true exposure to post-SCI sex and sexuality issues wouldn’t come until I was almost discharged from rehab from Craig Hospital. All residents that were within their last two weeks of rehab were put into this extra daily class that was sort of a “here’s all the other SCI related things that didn’t come up in PT or OT that you need to know before you go home” unit. One very uncomfortable day was all about post-SCI sex. First, we talked generals about dealing with the mechanics of post-SCI sex: the realistic levels of sexual dysfunction and impotence, the difficulties/frustrations of achieving/maintaining erections for men, the inability for women’s bodies to produce natural sexual lubricant, about the lack of sexual sensitivity/pleasure, that orgasms can result in autonomic dysreflexia, that male ejaculate can possibly be differently colored due to the body’s lack of regular expulsion, etc. Then we watched an educational film that can best be described as cripple porn, that showed a handful of couples in various disability combinations (e.g. SCI guy and able-bodied wife, a couple that both have SCI) doing fairly graphic couple sex stuff. (FYI not a recommended watch. Nope.) Then third, the guys and the girls went to separate rooms to talk shop in more of an open, candid, and comfortable setting.

In my room it was me—an eighteen year old with a girlfriend—a late twenties paraplegic who was engaged to a very cute and supportive blond, a forty-something para who was married with three young kids, and the token quad who was “in the know” about SCI sex and alternative SCI sexual techniques. After he asked if we had any questions thus far about the lecture or video, which we didn’t because it was awkward, one by one he started pulling things out of this small black magic sex satchel. He started off by saying that if you were lucky enough to achieve/maintain an erection then more power to you. But for those who struggled, the alternative options included Viagra (or Cialis, et al), which doesn’t always work for SCI folks; a vacuum pump a la the Swedish pump that Austin Powers tried to deny “wasn’t his bag, baby”; an electro stimulant, which seemed more like a cattle prod for your junk than anything; using vibrators or dildos in lieu of the impotent/flaccid penis (if that’s the case); and most invasive of all, a surgical procedure that places small balloons in the spongy material of the penis shaft so that when you want to achieve an erection you use an external pump to fill up the balloons. Once he took us through the paces he finally said something like, “Honestly, talking about half this stuff freaks me out a little but I have lay out all the options for you” and we all let out a collective sigh because we were all thinking the same thing. But the point is that many quads have to jump through some wild hoops just to be able to have sex, and that can make people feel unattractive, unsatisfying, and asexual.

Now that being said, it is not by any means to suggest that quads can’t have healthy, active, successful, mutually pleasurable sex lives, even involving sessions that include some mind blowing stuff. But by the same token it does, unfortunately, have it’s limits. Again, because the whole body isn’t involved and the mechanics are a little different. For example, unrelated things going on with the body (e.g. bladder issues) can spoil the fun at inopportune times. Without that direct nerve/sensory/passion/emotional connection between the brain and the penis it means that even hot and heavy make out/foreplay sessions may not result in an erection the way it does with able-bodied guys, which in turn can lead to embarrassing and sympathetic “Hey it happens to other guys too” territory or unintentionally leaves the impression that you’re not turned on by the girl. Clearly, locations where you can have sex are limited, so by default that takes away some of the excitement and spontaneity of the act. All in all it requires a partner who is patient, understanding, and open minded.

The other relatable perspective quickly worth mentioning is the feeling, depending on how much you choose to dwell on it, that you won’t and don’t stack up in the overall sexy, exciting, satisfying, performance category with other able-bodied guys. An unfair comparison from jump street to be sure, but one that naturally exists nonetheless. But the bottom line notion is that everyone wants to fully satisfy their mate, or that should be one of the primary goals in my opinion, and it’s real hard to not feel like the aforementioned limits prevent that for quads. Moreover, even if things are really, really, satisfactorily great in that department with your girlfriend/wife the very realistic reality that you will doubtfully be the best she’s ever had can be difficult to deal with as well.

So cutting back the to the show, all those interrelating thoughts and issues hit me out of nowhere mid-performance and it was unexpectedly quite a bummer. And being there with someone that I was attracted to somehow seemed to heighten those uncomfortable moments and inadequate feelings from my perspective. All of that being said, as we left the show I felt thoroughly entertained and I was real glad that I checked it out, but at the same time I couldn’t help but wonder if the subject matter of the “The Vagina Monologues” was just as inaccessible as the venue that hosted it.

Tuesday, February 8, 2011

On “Glee,” Dreams, and SCI Therapies

I will admit at the onset that this post is quite belated. I meant to finish and post it about a week after my last “Glee” post went up this past May so that there was much more congruency and relatability but I kept writing about other stuff instead and it kept getting pushed back. I also realize that proceeding to write a second pretty detailed blog post about “Glee” doesn’t exactly backup my previous denial of being a “Gleek.” A super fan of the show I still am not but I do continue to watch regularly, if anything because from my perspective I have found the show to be an interesting case study on spinal cord injuries in a number of ways.

For example, last time I broke down the controversy and discussed my thoughts involved with the fact that an actor who is able-bodied is playing the part of the paraplegic character, Artie. Many people in the disability world have been up in arms over such a notion, especially when it is such a featured character on such an mammothly popular TV show. To wit, check out all the articles I cited last time plus this pretty detailed and critical article about the Artie able-bodied actor dichotomy, how he does a poor job making himself a believable paraplegic and regular wheelchair user, and the show’s handling and portrayal of disabilities in general.

By extension, the focus of this post revolves around a few things that came to light in last spring’s “Dream On” episode, namely dreams and SCI therapies. Towards the beginning of the episode each glee club student is implored to write down their dreams on a piece of paper. One of the girl characters named Tina asks Artie what he wrote down, and with a little more urging he responded that his dream is to dance, but then quickly adds that it’s a stupid dream because it will never come true on account of the paralysis to his lower extremities. She also asks him to do a partners dance routine with her, which leads to some awkward and unsuccessful attempts. On both accounts Artie ends up wanting to be left alone, presumably feeling inadequate as both a person and a boyfriend. Later that day or the next day (I forget which) Tina approaches Artie with an armful of the latest research materials on therapies that could assist him in walking again. At that point Artie demurs but on account of her enthusiasm he takes the materials anyway.

Now when TV shows and movies start dipping into that “magic SCI therapies” territory it makes me (and I assume a lot of other people with actual SCI) cringe because it seems like a lot of times they do one of two things: 1) They give the impression that healing paralysis is simply a matter of getting the right kind of therapy, glossing over the fact that in most cases it’s a permanent diagnosis until scientific breakthroughs (e.g. stem cell research) result in a viable cure. 2) They suggest that living with paralysis is a below average, unhappy, day in and day out depressing lifestyle. Case and point to the latter theme: the premise at the end of the movie MILLION DOLLAR BABY that the Maggie character would much rather die than live the rest of her life as a quadriplegic, which was offensive to many people living with paralysis. Arguably, the most widely seen example of the former theme was the sub-plot in AVATAR that if the paraplegic character Jake successfully infiltrated the Na’vi people via his avatar technology and fed Colonel Miles insider information that Miles would ensure that Jake “got his legs back,” as if it were just that simple. And might I quickly add, no cure for paralysis all those years in the future? Man let’s hope not!

Back to the episode, now full of hope Artie visits the school counselor, Emma, to talk to her about said therapies. Where I thought the show did a good job was how Emma interjected a solid dose of reality, reminding Artie that he had sustained a pretty serious spinal cord injury and that there weren’t a lot of special therapies that were going to get him walking again right away, if ever. Now with Artie’s bubble burst, he leaves the therapy materials behind in Emma’s office, turns around and wheels out like a depressed sad sack, presumably having given up hope. That ties into the second TV/movie theme that I just mentioned above.

Smash cut to a little bit later in the episode and we find Artie shopping at the mall. Tina approaches him and he seems to be in much improved spirits. He quickly mentions that he took her advice and saw the therapists and that his therapy was going far better than expected. Then the camera pans down to Artie’s feet where you not only see one foot start to move, but then both feet come off of his wheelchair foot cage. At that moment I remember thinking, “What? No f------g way!” Then he proceeds to not only stand up from his chair, but he breaks into a full song and dance routine featuring the song “Safety Dance” by Men Without Hats. When the flash mob style mall dance party ends it quickly cuts back to Artie sitting back in his wheelchair and it’s revealed that the whole sequence was just Artie’s daydream. Here’s a link to the video, but it starts after Artie stands up from his wheelchair chair and ends a split second after he plops back down in his chair.

To many people in the disability community that whole dance sequence exacerbated the able-bodied actor playing a person with a disability controversy. Many of the comments that I’ve read about it described that sequence as offensive to SCI wheelchair users. Specifically, that “Glee” and the able-bodied actor playing Artie were throwing the fact that he didn’t really have a disability in the faces of all of us who really do.

Being in a relatable position I can clearly understand where those gripes are coming from. But after factoring in the scene in its entirety I ultimately came down on the side that I didn’t have a problem with it. The main reason for that is that based on my life’s own SCI experiences I found that kind of sequence quite realistic because I daydream about doing able-bodied things all the time. And much like the Artie dance sequence, those daydreams can be triggered by numerous situations in numerous locations, and can also involve very lengthy, detailed brain-fueled scenarios.

For example, during the summer I often daydream about the ability to dive in the lake at my parent’s cabin to cool off. When finding accessible parking is a pain in the ass or other similarly inaccessible situations creep up I daydream about parking anywhere I want and having unlimited access. Almost every time I’m around my niece and nephew I fantasize about getting to be more active with them and babysitting them on my own (for more about that see my post on the EasyStand Blog about being an uncle with SCI). Getting in and out of bed with ease on my own is a common one. Going on vacation or a lengthy road trip untethered from all the things that make it difficult springs up fairly often as well.

Being single for as long as I have a whole plethora of my able-bodied daydreams revolve around women: the want to be more approachable without the wheelchair;  showing off the buff bod I no longer have; the desire to sit or cuddle up next to a girl on the couch or other close contact situations to more easily be able to start generating that subtly obvious “I like you” chemistry; being more of a helping hand when it comes to moving or home repair type situations that score you close, one on one time; being able to stop by her place whenever I want without stairs or other inaccessible obstacles preventing it; opening the door or pulling her chair out on a date instead of vice versa; being able to step in to plant a kiss on her instead of needing her to bend down to my level first, which also often quasi-requires her to make the first move; etc. Whenever I’ve felt like I’ve been passed over for someone who’s able-bodied in terms of a potential relationship, those “I wish I could have been able to do more able-bodied things to ‘woo’ her” daydream thoughts tend to kick into a higher gear, whether disability was a factor in her decision or not. It’s just the nature of the beast.

Related, one of my most recent guest posts on the EasyStand Blog was about what I would do if I could utilize virtual reality technology to do able-bodied things, and since all of those items apply to the aforementioned daydream list I refer readers to that post for my more detailed thoughts on the matter.

My point is that I didn’t have a problem with the Artie daydream dance sequence because it’s deeply rooted in my own reality. Moreover, I would say that well over half of the night time dreams that I’ve had since sustaining my spinal cord injury have consisted of me being in some form of able bodied state, and I think that is a common thing with many other SCI folks as well. Christopher Reeves used to say that his dreams always consisted of him walking around. When you’ve lived an able bodied life for a certain period of time the “dream zone” of your brain doesn’t exactly switch to a strictly SCI-disability perspective automatically.

I slept awful for the first few weeks right after my diving accident and not very well for up to a few months later either because I was predominantly a stomach sleeper most of my life and I had a hard time being forced to sleep on my back every night in the hospital. Thus I rarely dreamed because I didn’t hit that REM sleep zone when I was constantly sleeping like crap. But once I adjusted my dreams were always fully able-bodied and it was a major bummer to dream about doing fun high school things with my friends then wake up to a quadriplegic body in a hospital bed. But as time went by over the years I just got more and more used to it and adjusted to it. I’ve gotten to a point now where if I have a good able-bodied dream I can wake up and go, “Damn, that was a good one” or “That would have been fun if it was real.” I would say that the most common dream theme I have involves me standing up from my wheelchair, walking away and looking back at it thinking, “Well that was easy, why haven’t I tried that before?” Another common theme has me able to easily roll my wheelchair up stairs like an ATV, and again I find myself wondering why I don’t do that more often. Not quite an able-bodied thing but still extends beyond straight disability.

But the more interesting thing is that armed with fourteen plus year’s worth of SCI life experience, over the last few years my dreams have more often than not taken on more of an SCI/able-bodied hybrid form. So a frequent dream sequence will start with me walking around, etc. but then the logical portion of my subconscious must kick in and brings me back to the SCI world. So I might suddenly think to myself in my dream “Wait I can’t go down these stairs.” A lot of times if I have to go to the bathroom in my dreams it’s still not by standing over the toilet to take a leak like normal, and I still search out an accessible bathroom situation. Or if it it’s a sex dream they often don’t involve a lot of lower body sensational pleasure because I’ve found that if I can’t feel parts of my body in real life, in that case my “man bits,” then I usually don’t in my dreams either.

The best example of the latter is a dream I had recently. I was hanging out a pool with some friends and my sister and I had a “Screw it, it’s been fourteen years and I’m finally going for a swim” moment. I threw off my shirt and walked to the edge of the pool. Behind me I heard my sister say, “Good for him” because in a lot of respects I’ve always limited myself in what I can and can’t do with my disability, as well as been pretty guarded about bodily things I’m self-conscious about vis a vis my SCI. In this particular dream’s case, the scars on my torso from chest tubes that were put in for both my pre- and post-SCI collapsed lung surgeries, the big gross scar on the back of my neck from my neck fusion surgery, and the “quad gut” that has me looking a few months pregnant. In that dream I just let it all hang out and dove in the water. But although in the dream I was gliding through the water with full able-bodied ease, I could only feel the coolness of the pool water on my face, neck, hands, arms, and chest above the nipple line, as is the case with my level of sensitivity in real life. Those kinds of dreams are very strange and interesting though obviously, both to have and to wake up from.

The last Artie, SCI therapies, “Glee” issue to quickly cover came up in this season’s “A Very Glee Christmas” episode. Artie’s aloof girlfriend, who inexplicably still believes in Santa Claus, tells a a mall Santa that all she wants for Christmas is for Artie to walk again, and he agrees, which sets up an awkward plotline inside and outside of the episode. At the end of the episode we find Artie wearing a pair of mechanical legs and in Christmas miracle fashion he is able to stand up and walk. I would have called BS on that too had I not already seen this cool video of paraplegics regaining the ability to walk via mechanical eLEGS from Berkeley Bionics. Can’t wait for the quadriplegic version to come out!

If any more interesting “Glee” SCI related issues come up on the show you can bet that I’ll cover it.

Friday, February 4, 2011

New EasyStand Guest Blog Post: The Need for More Education About Disabilities for Kids

My latest guest post on the EasyStand Blog went live today. The discovery that an offensive disability gesture from my youth has continued survive led me to analyze the need for more education about disabilities for kids, starting with books.

So please check it out: The Need for More Education About Disabilities for Kids