The Follies of Youth

Eons ago, when dinosaurs ruled the land, my college boyfriend and I got to see Bruce Springsteen live during his 1984 Born in the USA tour. Having been baptized several years earlier into the Church of the Boss, we had a grand time. We could only afford the cheapest seats (because…college students), which were behind the stage. But we didn’t care because there was the Boss and the Big Man and the rest of the E Street Band pouring all their sweat, blood, and love into every song.

That same year, on that same tour, Billboard Magazine columnist Mitch Myers also saw Springsteen perform. However, he had much better seats than we did, as he revealed in his most recent column. Of course the *reason* he had those awesome seats was based on a lie. Which, apparently, he took more than 30 years to reveal.

Now I am pretty sure some of you will say that well, he was young and foolish, and didn’t know better. This seems to be the case, based on his accounting. But there are two problems with this.

First, and most obvious, when he felt (rightfully) ashamed of what he had done, he left the show. Had that been the end of it, I likely would have just shaken my head at his story and moved on. However, that’s not what happened. Instead, he and his buddy decided to return to the show *using the very same tickets meant for disabled people* and proceeded to jump around with glee to the music. Not much shame there, if a mere 15 or so minutes later, he was back inside the arena using the tickets that were meant to go to the people at the rehab facility.

Second, when I was 19, I did not identify as disabled. I thought nothing of climbing up to almost the last row of seats for that Springsteen concert. I was young and relatively healthy, so it was not a burden for me to do so. Nevertheless, it would never have occurred to me to even consider pulling off a stunt like that of Myers. Handicapped/disabled seating was for people who were…well…disabled. In other words, people not me.

Frankly, Myers can blame it on youth, peer pressure, or the follies of youth.The truth is that, despite what he might think, he really had *no idea* what it was like to be in a wheelchair. At the end of the evening, he could get out of that chair, fold it up, put it in the back of the van, and go on with his life as an able-bodied individual. There was no lesson learned.

Instead, Myers has a story to share in his magazine column, rather than a story shared by one of the rehab patients about the magical night they got to see the Boss play, up close and personal. And no amount of confession 30 years later will make up for that.

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Not Your Sacrificial Offering

I’m going to start this by saying that this is likely to be the least impartial post I have ever done for this blog. It is also the one most likely to cost me friends. I’d be lying if I said that didn’t make me hesitate, because some of them are quite dear to me. But I also cannot keep quiet about this.

For those who have been living in a cave for the past year, we are in a…contentious Presidential election cycle here in the good old USA. In the right corner, we have a demagogue billionaire and a Holy Roller. In the left corner, we have a former First Lady and a Socialist radical. If you’ve been living about 100 feet below the surface of that cave, it may come as a surprise that the contenders in each corner are busy duke-ing it out with the other occupant of that corner. For the record, my preferences lean leftward.

But this is not about me. This is about my fellow leftward leaners who have decided that if their preferred candidate is not the victor in their corner by the time the dust settles, they will either refuse to vote in the general election or vote for whoever is still standing in the right corner of the ring because, well, this country is fucked unless their candidate wins, so they might as well raise their middle finger one last time.

Here’s the problem I have with that. Both of the candidates in the left corner of the ring have included some form of affordable health care as part of their platform. Neither of the candidates in the right corner do. In fact, were it up to them, the current provisions for the Affordable Care Act (ACA) would be completely dismantled and insurance companies would be free to raise their premiums to pre-ACA levels.

Given my various health issues, no insurance company will take me on if there is no regulation of cost. Well, OK, they might…at exorbitant premiums. So in short, while I do have a preferred left-corner candidate, at least both of them have some provision for affordable health care. Oh, and just to stop-thrust the “BUT YOU JUST WANT SOMETHING FOR FREE!!!” bullshit — Yes, I have a job. I work for myself. And yes, I pay my quarterly estimated taxes like clockwork. I don’t expect anything for free out of my government. I just want it to be affordable.

So to those of you in the left corner who have declared you will refuse to support anybody but your preferred candidate: Why the fuck are you telling me to be your sacrificial offering? I presume that you would be able to afford your health care premiums without government assistance, since you would gleefully light that I GOT MINE ,JACK bonfire if the candidate you support doesn’t get the nod. So you’re set. Awesome for you. But seriously…do you just not give a shit about me — or people like me — that you would happily throw us onto that bonfire just so you can dance around it naked in some sort of FUCK ANYBODY BUT ME ritual?

No, really — I want to know. Use short words, and make me smart. Because I’ve spent the good part of the last month coming up with a contingency plan as to what I will do in the event that either candidate in the right corner of the ring actually gets to sit in the Big Chair. Yeah, bet you don’t have to worry about that, do you? Of course not. Because that’s for people not you to worry about. And goodness me, how much that sounds like things coming out of the right corner of the ring.

So c’mon. Hit me with your best shot. Tell me why I should get to fall on my sword in the name of your ideology. Take your time. I’m not going anywhere just yet. At least not until after the general election.


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Diversity and Inclusiveness

Last month, I participated in a panel on the topic of The Changing Face of Fandom at a local science fiction convention. The panel was very interesting in terms of having a reasonably good cross-representation of panelists.

At one point, Arturo R. Garcia (Managing Editor at Racalicious) brought up an interesting point. They said that there is a difference between diversity and inclusiveness. The former acknowledges that there is a wider variety of people who now participate in fandom/geekdom than previously. The latter takes it step one step further by providing them a space in which to participate.

In many ways, this concept explains how, as a disabled person, I feel about the place I have within the geek community. Is there recognition that I can be a part of geekdom? Yes. Is there an effort made to make me, disability and all, feel included? Weeell…there’s room for improvement.

The geek community has made great strides in recognizing that there is a wide range of people along the cultural, racial, and gender spectrums who are not only part of the geek community, but deserve to actively participate in it. The recent Sad Puppy debacle  and K.T. Bradford’s one-year reading challenge are perfect examples of the sea change that the geek community has undergone in this regard. There’s so much more to be done, certainly, but it has come a fair middling distance since I first got involved almost 30 years ago.

And to be fair, the representation of disability within geek media has come a fair distance as well, as evidenced in Tyrion Lannister in Game of Thrones and Furiosa in Mad Max: Fury Road. Each, in their own ways, is a radical departure from the inspiration porn black hole to which disabled characters usually get relegated. Yet this is still about diversity, not inclusiveness.

For as much as the geek community likes to talk about how it is welcoming and accepting of all comers, I still sometimes feel like the only acceptable role for me is that of sideshow freak. And when I remind people that I am more than that, they take great offense because I am somehow not feeding their natural geekish curiosity about my appearance by being…well…a Teachable Moment. Ultimately, as Arturo and I discussed after the panel, I’m still left with wondering when I will feel not just nodded at, but actually included, warts and all, within geekdom.




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Fast and Furiousa



Whatever your opinion may be about Mel “Sugartits” Gibson, there is no question that the Mad Max movies set the visual standard for any future post-apocalyptic films. Movies such as Tank Girl and Waterworld owe their look and feel to Mad Max. Hell, if you are up for it, you can actually play in that world for an entire weekend. I confess that I love the concept of Wasteland Weekend, but the reality of the desert in late spring/early summer just does not appeal to me.

That being said, I was excited for the latest Mad Max film. It certainly delivered what all the prior Mad Max films delivered — crazy road chases with lots of explosions. And a musical battlewagon (that’s the name of my next punk rock band, BTW) complete with taiko drummers and a guy playing a flame-throwing guitar. That all by itself would be enough to get my butt into a theater seat.

But there was something more. I’ve talked in the past about problematic representations of disabilities in the media (most notably, Glee). At best, those of us with disabilities simply don’t exist in media portrayals. At worst, we become little more than an inspiration porn plot device, set to the tune of heart-tugging songs by the Dave Matthews Band.

Cue the entrance of Furiousa. What are we told about her? Well, she’s obviously a bad-ass. She has worked her way up the ranks into a trusted position. She’s not a girly girl. And there was one other thing…what was it? Oh, that’s right — the missing arm. Which really, was never even addressed in the movie.

Now I know what you guys are thinking…Why isn’t that addressed in the movie? Everybody acts like she’s not a gimp. *How insulting!* You’re right — at no time are there any shots that lovingly linger on her bionic arm. Nobody asks her what happened, and neither does she say. And the guy with the flame-throwing guitar was not playing any Dave Matthews tunes.

The only time the movie even alludes to her disability is one brief scene in which she commands Max to hold still because she is going to use his shoulder to help her steady her rifle before taking the kill shot on the baddies chasing them. Furiousa never actually says WHY she needs to use his shoulder; she just takes the shot and moves on. Neither does Max pause awkwardly to offer his shoulder because clearly, she is unable to take that shot without his assistance. Nope — Max just does as she commands because he has no need to know why she needs his help, only that she does.

And that, my friends, is FUCKING AMAZING!!! Of all of the things we are told about Furiousa…of all we learn about her…the fact that she is missing half an arm is the LEAST AWESOME thing about her. Why? Because who the fuck CARES why? She’s already proven herself a bad-ass (even Max acknowledges this). So why should we even CARE why half her arm is gone? She has no need to tell us why, but just goes about her business of being a bad-ass, thank you very much.

In the post-apocalyptic world of Mad Max, you get to be one of two, and only two things — competent or dead. There is no question that Furiousa is competent. And that, right there, is what makes Furiousa so awesome. She is tough, and smart, and can handle herself. None of which is framed as happening in spite of her disability, but instead are things she would be even if she had two fully functional arms.

Sometimes it is the stories we are not told about disability that are the most important ones. Furiousa is proof of this. And now, if y’all will excuse me, I’m off to plot about how to put together a diesel-punk version of Furiousa as a cosplay.

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Today’s Robot Hugs…

Gosh, does this sound at all familiar?


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The Name of the Beast

It is hard, to be the beast with no name. I’ve spent a considerable amount of time wondering what it would be like to finally have a name for this beast that has been a part of me for three-quarters of my life. I always thought it would be this ridiculously romanticized scene in which the doctor correctly diagnoses me at first sight (Hey, even Gregory House usually took three almost patient-killing swings at bat before getting the diagnosis right). There might even be a parting of the heavens, an angelic choir, and a rainbow-colored sparkly unicorn.

Well, I am here to tell you that was not how it went down. Instead, it was a two-page faxed copy of the results of the ANA panel I just had done. An ANA panel can determine if there is some sort of autoimmune/rheumatoid process going on — like lupus or fibromyalgia. That test is nothing new. I’ve had it run five or six times over the years, and while my condition behaves like an autoimmune disorder, I’ve never had actual confirmation of this.

Until today. For the first time in…ever…the ANA results came back positive. And I am sitting at the awkward intersection of hope, disbelief, mistrust, anger, and sadness. Without any rainbow sparkle unicorn to show for it.

Instead, I’ve got a whole bunch of What Ifs running around inside my brain. What if it was missed all the previous times? What if there’s a treatment that might help. What if there still doesn’t turn out to be one? What if I had pushed harder for an answer earlier on?

What if this thing that has been a huge part of my identity…isn’t?

What if the beast now actually has a name?

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The Playboy Model, the Snake Oil Salesman, and Me

As no doubt many of you have heard, Disneyland right now is far from the happiest place on earth due to a measles outbreak that has reached 70 people at last count. State officials are urging people who have not been vaccinated to stay away from Disneyland, and local schools have begun sending unvaccinated students home.

Now you may wonder what this has to do with me, as I have been vaccinated. The problem is several-fold. First is my proximity to Disneyland — approximately 10 miles. Second is that one case of measles has been traced to somebody who visited my local grocery store, 1.5 miles from my house. Third is that the vaccination rate in some of the wealthiest schools in my county have a vaccination rate *equal to that of Chad or the Sudan.* (just in case you still honestly believe that this happened because of the “diseases those filthy brown people brought with them when they crossed the border illegally”).

The problem, in a nutshell, is that thanks to people who trust the medical advice doled out by a former Playboy model or a former doctor who got paid a princely sum for his fraudulent research that started this entire Mongolian clusterfuck of anti-science, I cannot even go as far as that grocery store without being side-eyed as one of those willfully ignorant idiots who “knows what is best for their family.”

To wit: Last week, I went to run errands and grab some lunch while I was out. Two women with babies sit down at the table across from me. One of them came over to me.

Woman: Excuse me, but would you mind moving further away?
Me (puzzled): Why?
Woman (making vague hand-waving gestures at my legs): Well, its your rash…and all the stories out of Disneyland.
Me: Uhhmmm…I don’t have measles. I’m not contagious
Woman (now making shooing motions at me like a fly): Well, could you move anyway? Better safe than sorry, right?
Me (in my best professionally polite voice): I have told you that I do not have measles and am not contagious. Which, actually, is more medical information than you have a right to, unless you are my doctor or my health insurance company. If that is not enough for you, perhaps you should instead move.

So let us recap what just happened there. Because of a Playboy model and a profiteering snake oil salesman of a doctor, my right to exist anywhere outside my own home has come into question. Furthermore, I am now associated with their slack-jawed acolytes who reject scientific fact in favor of some whackball conspiracy theory about big pharma making a fortune off vaccines.

Here’s a fucking clue — vaccines are dirt cheap. The CDC price for the MMR vaccine (that’s the one against measles, mumps, and rubella) comes out to a whopping…no wait for it…$19.95 for a 10-pack. Even the private sector price of $56.14 for a 10-pack is dirt cheap. Know where big pharma makes its money? *TREATING THE FUCKING DISEASES THAT VACCINES PREVENT*!!!

But no, by all means, you know what is best for your precious offspring, for whom the miniscule chance of them being autistic is so unbearable that you reject common sense because you’ve “done your research” of reading a dumbed-down summary of Wakefield’s original article or watched YouTube videos of Jenny McCarthy’s impassioned pleas that a mother’s instinct is worth more than established scientific fact.

Meanwhile, I should just be expected to…what? Never leave my house? Provide complete strangers with access to my health status that federal law says is none of their business? All so that you can smugly declare that you have no need to immunize your kid because those of us who have been immunized will protect them, even though we are all dupes and sheeple for buying into the immunization scheme to begin with.

Fuck that. And also? Fuck you.

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