Sunday, May 23, 2010

On “Glee” and SCI Acting in General

I’ve never been a chorus, show choir, American Idol, musicals, etc. guy, but I will admit that I watch FOX’s show “Glee.” However, I’m not a full fledged “Gleek,” and to that point I have a hairpin trigger finger when it comes to fast forwarding through song and dance scenes that I think are way too cheesy for my taste (at least one per episide I'd say), but I do like the show overall. In general, I think that the TV shows that I’ve enjoyed the most over the past six years or so are the ones that involve an out-of-the-box type premise, and “Glee” intrigued me immediately for that reason. The pilot episode slowly lured me in with the teasing and weaving of a few Journey tunes into the plot line and by the time the final scene exploded into a full length glee club performance of “Don’t Stop Believin’” I was sucked in quite a bit. A year later and I’m still watching.

One of the other primary reasons why I get a regular kick out of “Glee” is that it is one of the very rare TV shows that actively incorporates characters with disabilities. Namely, one of the core glee club characters is a wheelchair using paraplegic named “Artie.” Using a wheelchair myself, my ears sort of perk up whenever I see TV shows or movies that involve wheelchair using characters. But the Artie character alone has been the subject of national controversy among many disability circles because the actor who plays Artie (Kevin McHale) is able-bodied. The main focus of that controversy is the bigger picture issue that film and television casting types frequently give the acting parts of characters with disabilities to actors who do not have disabilities themselves. Apparently, the producers of “Glee” did audition actors who use wheelchairs, but how solid a first shot the rest of the producers actually give actors with the applicable disability during the casting tryout process is a whole other issue. FYI you can check out articles that discuss these issues here, here, here, and here.

To that affect, one of the most common justifications I’ve read about this discrepancy is the fact that hiring an actor with a disability would result in an “increased liability” on the set, etc. In some respects that might be true, but in general it’s just a convenient, albeit lame, throw away excuse that sounds credible. People with disabilities hear that “liability” argument all the time. I’ve heard it myself in a handful of situations over the years and my reaction has ranged from raising an eyebrow to getting full on ticked off because it made no sense.

In the comments of one of my past posts someone asked my take on all of that above and to no surprise I come down on the side that the more people with actual disabilities playing characters with the applicable disability the better. But I also realize and understand that finding the perfect actor candidate with a disability to play the specific part can be a challenge as well. In the end, the overall best prospect gets the gig. That being said, I don’t think that it could have been THAT hard finding a real life male paraplegic with enough singing and modified wheelchair dancing choreography talent to fill that part on “Glee.” But I’m obviously no expert on the mechanics of putting together a show like that.

Nine times out of ten I can spot which wheelchair actors have actual disabilities and which ones don't. If they are able-bodied more often than not they miss the mark because there are so many subtleties to pulling off someone who regularly uses a wheelchair than just sitting in one and rolling around. Some of the things that stick out drive me absolutely nuts too. Take Artie from “Glee," for example. The thing I can never get past when I watch him on the show is how both of his legs lay limply to one side while he’s sitting in his chair. It either means that his chair frame is too small for his body or he needs his foot pedals lowered so his legs will sit more straight up and down. Legs lying limply to the side breeds bad sitting posture, opens the person's body up to the potential of pressure sores, and no rehab therapist worth their salt would let their paraplegic client live their all day, every day life like that without making the proper wheelchair seating adjustments. Every wheelchair user I see, especially those with SCI, who have both of their legs drooping to the side like that is either using the wrong chair for their body type, never got the proper adjustments, is using a hand-me-down chair, or prefers it that way (doubtful). And it’s a big time tell that an actor does not have a disability. Which means that no one in the know about such matters has pointed that error out to the “Glee” folks, or they are doing it on purpose by taking some cinematic liberties to enhance Artie’s disability.

For the record, I thought that the actor that played Jason Street on “Friday Night Lights” (Scott Porter) did a nice job portraying a quadriplegic. That character's level of injury mirrored mine so I watched every scene he was in with a sharp eye. The shoulders, the fingers, the way he transferred into his chair, etc. was pretty spot on. Ditto for the guy that played Street’s quad buddy Herc on the show (Kevin Rankin). In fact, Rankin was so convincing as a quad to me that when I saw him out of a wheelchair on an episode of “Bionic Woman” I was quite a bit shocked that he wasn’t a real quad.

Where the “Artie the paraplegic who is played by an actor who is not a paraplegic” issue has made some positive headway though is that is has seemed to have opened the door for other actors with real disabilities to get parts on the show. Most notably, two weeks ago on the “Laryngitis” episode real life C4-6 quadriplegic actor Zach Weinstein played a C-4 quad who was paralyzed in a football game. I read all about it ahead of time so I knew when his episode coming up but it was still very cool to me. Good for that guy. And his two scenes were pretty enlightening in relation to that particular episode’s plot, save for the played out "be glad for what you have, it could be worse: you could have a significant disability instead" underlying life lesson theme. FYI here is a link to a post that Zach wrote for the Christopher and Dana Reeve Foundation blog about his lifelong desire to act—before and after his paralyzing accident—and his reflections on auditioning for his part on “Glee.” Additionally, here is a link to an interesting blog post that he wrote about his experience on the set of “Glee” filming his scenes. Fun fact: he got his own wheelchair accessible trailer. (*Editing note: Zach starred in the "Short Fuse" episode on this season of "N.C.I.S." His scene involved him working out on an UPPERTONE machine, which a universal gym specifically designed for quads.)

Another controversy about Artie and the “paraplegic who is played by an actor who is not a paraplegic” issue was stoked in the latest episode of “Glee” (“Dream On”) when during a dream sequence Artie got up and danced because is SCI therapies were working so well. But I’ll share my extended thoughts on that next time.

Saturday, May 15, 2010

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

There is not a whole lot that needs to be said about this picture. Pretty ridiculous. Pretty ignorant. I've come across plenty of accessible parking spots and/or their locations that have made me scratch my head, but thankfully I've never encountered anything like this. It really makes you wonder what goes through people's minds sometimes.

Wednesday, May 12, 2010

The Top Ten Things that Annoy People in Wheelchairs

Recently the Christopher and Dana Reeve Foundation conducted a poll, which I took a part of, about the Top Ten Things that Annoy People in Wheelchairs. The following are the results:

1. Able-bodied people parking in accessible parking spaces 37%

2. Accessible bathroom stalls being used by an able-bodied person 12%

3. Talking over my head as if I'm not here 9%

4. Continuing to insist on helping me after I've said no thanks 8.3%

5. Congratulating me for things like going to the grocery store like it's worthy of an Olympic medal 6.1%

6. Strangers asking what happened to me 5.7%

7. Not inviting me to an event because you are protecting me from some frustration (let me figure it out) 5.3%

8. Patting me on my head. Don't. 5.0%

9. Holding on to the back of my chair so I can't move 4.4%

10. Speaking slowly to me because I'm in a wheelchair 3.5%

I tend to agree with this list on the whole. People that know me, have been out and about with me, or have read enough of this blog know that I would certainly have item #1 at the top of my list. I do find it interesting that so many others ranked it so far and above the rest as well. Handicapped parking annoyance was 37% and the next item was 12%, that’s quite a jump from #1 to #2.

As for the rest, given these particular items I would probably move #2 down further because I don't find a great deal of frustration with that one myself. Plenty of bathrooms have just one toilet stall that also doubles as the accessible one so there's no reason getting frustrated if it’s occupied by an able bodied person. Only when there are a whole handful of toilets and the only accessible one is being used, presumably because it's roomier, does that annoy me. It’s sort of akin to the “guy rule” that when using a public bathroom you don’t take the open urinal right next to another guy’s if it is at all possible that you can maintain an empty one between the two of you. Anyway, it’s not frustrating enough to make it number two on my list. I haven't seen it yet myself, but an able bodied person using an accessible toilet stall was a storyline of an episode of "Curb Your Enthusiasm."

Number 3 happens all the time so I would probably move that up to my #2. I can't tell you how many conversations with multiple people that I've been in over the years where people talk around and/or over me and don't make equal eye contact with me at all. A lot of time it's as if I am not even there. That gets beyond frustrating. It’s a phenomenon that I never experienced before I started using a wheelchair.

I would move #4 up a notch too because even though they mean well some people just don't take no for an answer. If I can do something by myself then I don’t want help. A few months ago I had to tell a grocery store lady no thanks I didn't need any help at least four times ("Are you sure? That's what I'm here for."), and even then she continued to linger nearby, in disbelief and waiting for me to change my mind, until I moved away from her to the next aisle. As strange as it might sound to some, shopping on my own like that can be a large matter of pride and independence.

Number 6 I might move up a bit because as open as I am about that kind of thing sometimes it just isn't appropriate to ask why I'm in a wheelchair. I've been asked in all kinds of different sets of circumstances and plenty of them have been just plain awkward. Like where it's obvious that I'm having a discussion with a friend or the like and someone else butts in because their curiosity overtook them. Related, it gets a little annoying how quick a lot of people are to bring forth an out of the blue anecdote about someone in their life who is in a "similar situation." Again, people mean well and want to compare notes, I understand that to a certain degree. But if someone had an obviously bad burn scar on half their face it is pretty much universally understood that it would be highly inappropriate to say to them, "Hey my sister burned herself really bad once." It’s been my experience that with a wheelchair related disability like mine it seems like some people lose that sense of appropriateness.

Number 9 I would probably drop off of this list because it's never happened to me. And with my power chair I wish good luck to whoever tries to hold my chair and stop me from moving anyway. I have had people sitting behind me at movie theaters rest their feet up against my chair or even on it. My wheelchair is not a footstool, etc. I don't think people realize that this thing is an extension of my body so I feel every tiny little external bump or tap.

Number 7 I would probably drop off the list too because it hasn't happened to me. Or, I suppose, if it has I wouldn't have known about it. But I doubt it’s ever been done deliberately. If anything, the opposite is true more often than not. That is to say that I get invited places that aren't accessible and people haven't factored that in whatsoever. When it’s people that aren’t involved with the disability world it’s only marginally annoying because they wouldn’t think of the accessibility factor, save for it being simple common sense. But when it’s family or friends that have put me in that position it definitely goes to a higher level of annoyance or frustration in the sense that I feel like they should have known better than to put me in that position in the first place. But that doesn’t occur much. Either way it can make for some awkward moments to be sure. If the inaccessibility is a no go the quickest solution is for me to either not go in the first place or leave once I discover that it won’t work out. But plenty of times people want to try and “make it work” somehow by fudging some semblance of accessibility, except “making it work” doesn't always work for me. For example, I might not want to be carried up or down a flight of stairs. Of course, that leads to putting me in the unenviable position of either doing something I’m not comfortable with to make it work or possibly ruining the fun and causing further collective embarrassment by not participating if I don’t want to make it work. Moreover, sometimes when people are so willing to help in a situation like that but you don’t want their help because you’re uncomfortable with it then you end up looking unappreciative to them because they don’t understand where you’re coming from. That’s always tough. But that’s a whole other topic to itself.

As for #10 I would either add or supplement the word "loudly" because I can't say that I've ever had people talk extra slowly to me because I'm in a wheelchair but there has been numerous times where people have talked extra loud to me because I am. I had a home health nurse that used to do that all the time and it drove me nuts. She talked at a normal volume with everyone else in the room but practically yelled at me. Some people just equate the wheelchair with a hearing problem.

So there you go, the top ten things that annoy people in wheelchairs and my specific take on a handful of them. In sharing this list I thought that it would offer some helpful understanding about these items from my/the disability perspective, and how some people need to be more mindful about reacting to people with different abilities and respect their space.

Wednesday, May 5, 2010

One Man's Annoying/Aggravating/Interesting Access Picture of the Week

This is easily the most creative indicator of accessibility that I've ever seen. As you can see, it's an international symbol of access made out of a few dozen smaller ones. An even closer look also reveals that they used a variety of access symbols when they put it together. Very clever.

Saturday, May 1, 2010

Quad Engineering: Gloves

This is the second Quad Engineering post taken directly from a question I was asked in the comments section of an old post. I was asked why it seems that so many quadriplegics wear gloves. Again, with a few extra edits my response is:

You see paras wearing gloves much more often than quads because gloves offer protection to their hands as they wheel their chairs around, since so many more of them use manual wheelchairs. From what I've seen, quads that use manual chairs often wear gloves or something similar for both protection and to get some extra grip on their wheel rims. Quads that roll with power chairs probably don't wear gloves as often though because they don't need that extra hand protection to work the joystick to drive their chairs.

As for me, I use a power chair and wear fingerless biking/weight lifting gloves. I started wearing them back in rehab primarily as hand protection to wheeling my manual chair. But after I started using my power chair full time in college I kept wearing gloves because it became habit to put them on every morning, like an extension of my wardrobe. But the primary reason that I've kept wearing them to this day is because they give my hands, and fingers specifically, that extra stability they lack without them. Stability that makes it much easier for me to type, grab stuff, and do more fine motor things with my fingers (e.g. taking money out of my wallet). Otherwise, my fingers tend to be more flimsy and I feel like I have less control over them. From a personal aesthetic standpoint I prefer the hand structure that my hand has with my gloves too. As a result of my specific spinal cord injury my pinkies stick out a bit more than my other fingers. So it looks like a combination of giving the "hang loose" sign and the way that pretentious people raise up their pinkie while they sip on a cup of tea. It's not much and it's probably barely noticeable to others but it annoys me just enough. So it's nice that my gloves sort of keep my pinkie in line with the other fingers.

Speaking a little bit more about the grabbing things aspect, people that can just pick things up with the full use of their fingers don't realize how slippery the bare hand and fingers can be. Take me trying to pick up a piece of paper located in the middle of my desk, for example. To work around my inability to just grab and pick the piece of paper straight up I compensate by sliding the paper to the edge of the desk and then pick it up from the top and bottom simultaneously. It's essentially a quad trick of the trade when it comes to picking up just about everything that is flush to a surface or hard to get your hands underneath. Without my gloves trying to slide a piece of paper, etc. towards me sometimes takes a few attempts because my hands often slide right over the surface. But my gloves provide a much "stickier" surface to can grab at and slide stuff closer to me with much greater ease. Of course, part of the issue with that is that my hands have been covered with gloves the majority of the time for the past fourteen years and thus the skin hasn't been worn through every day use like with most people. So the result is that the skin on the palms of my hands is quite literally as soft as a baby's bottom. I'm sure if I ditched the gloves the skin would eventually get "seasoned" and gain that extra natural tackiness that would make for grabbing and sliding paper, etc. a lot easier. Gloves also sidestep that same slippery gripping issue in regards to driving, putting on clothes, and a lot of other things too.

Another primary reason that I use gloves is as an eating accommodation. While I was in rehab one of the occupational therapists made me an adaptive food utensil holder made of plastic and a Velcro strip that wrapped around my hand. When I decided that it was too awkward and encumbering I started using a universal cuff like the one in the picture in my last Quad Engineering post about typing. The problem with both of those was two-fold: 1) I had to take them with me everywhere I expected to eat a meal that required a fork or spoon, and 2) they couldn't accommodate food utensils with wide handles. The solution to the latter meant also having to carry a fork or spoon from home that fit perfectly just in case, which isn't ideal. Even more problematic was if I forgot my cuff altogether because all I could do then was to to weave the fork or spoon handle in between my fingers in order to hold it, which looks very odd and doesn't provide a lot of food lifting power. The only other solution was to have someone feed me but I would just assume take the whole meal home in a doggie bag if that were the case. It was on a night that I forgot my cuff and/or forgot my fork and I was stuck with one that was too big to fit my cuff that is essentially what lead me to start using my right glove to hold my fork for the first time. Using some quick ingenuity I stuck the end of the fork in the hole in my glove that my thumb goes through and boom, it worked just fine. The glove holds the fork in place and the bottom part of my thumb provides enough leverage for me to be able to eat any kind of food. It's a quick, built in accommodation so I don't need to worry about bringing eating cuffs and my own forks everywhere I go. And I have been eating with utensils that way ever since.

Nonetheless, I have been trying to move away from using gloves bit by bit over the last few years for a few reasons. One reason is that the kind of gloves I've been using for years aren't made anymore, and I haven't found a new kind that I think will work for me just as well. So I keep washing and fixing the ones I have. Second, I feel like they're socially awkward. I think that one of the first things that people notice about me is the wheelchair and coming in second at some point is the fact that I'm wearing gloves. I've been asked countless times over the years why I wear gloves, so it's obviously something that people are always curious about. But it's been tough making the move to ditch them for a combination of the reasons that I described above. For example, do I bring a glove with me everywhere I go to eat? I once again go back to that whole issue of what happens if I forget it and how do I eat with utensils again. I would also venture to say that without gloves I would burn my hands a lot more when I'm cooking, etc. But over the last few months I've been spending longer and longer stretches of time each day sans gloves, but I'm not ready to make the permanent switch away from them altogether yet. And to that point, if they make my life higher functioning in a lot of ways why would I?

Anyway, that's just a few reasons why you often see quads like me rocking the gloves: they are a simple, multi use accommodation that also gives my hands protection and stability.