Attack of the Activist!

A Fibro Moment

2011-05-19T18:48:00.003-04:00

You know what feels pathetic to me?

Spooning down cold instant mashed potatoes out of a plastic container while resting my body weight on the kitchen counter, so I can take my damn Vicodin.

Fuck you, fibro.

Snake Oil Sure Is Expensive These Days

2011-05-19T13:17:00.006-04:00

Yesterday, I went to the "Fibro and Fatigue Center" near me. What a waste of my time and energy.

This particular establishment was based primarily on "alternative" treatments: vitamins, supplements, antiviral injections, IVs to re-energize your mitochondria, some kind of treatment to beef up your cell walls. Not to mention the delightfully vague skepticist's red flag of "controlling your destiny".

Now, I have no idea if the treatment they're offering is effective or not. I'm sure it's at least as good as a placebo. I feel it is highly unlikely that this one group has come up with the secret to being symptom-free with fibro or CFIDS, but the rest of the scientific establishment is ignoring provable results. To quote Tim Minchin, "Do you know what they call ‘Alternative Medicine’
That’s been proved to work? MEDICINE."

But even if the brand of woo they're pitching is something that happens to be effective, I can't help but feel that it's a predatory operation - preying on a set of people who are pretty damn desperate. They take payment in the form of what is basically a membership fee - and they don't accept insurance. Take a moment and guess how much they want from you every month for a year in order to take the pain away. Go ahead, I'll wait.

...

I'll give you a hint: it's more than my mom's mortgage!
Five hundred and eighty-three American dollars. Yeah. Like that's going to happen.

The thing is though, that if I had the disposable income? I might try it; just out of the desperate hope that this fucking miserable condition could be in any way ameliorated. And I'm sure that's what they're counting on.
People who have chronic pain/fatigue have tried all sorts of "cures" and palliatives. People you don't even know that well are sure to give you all kinds of irritating recommendations for things you've already tried and worthless pseudo-science bullshit. We get so sick of navigating the maze of possible treatments and still being tired and in pain.

The F&F Clinic Experience:
So you arrive and go into a lobby that has comfy furniture and soothing music with bird sounds. You are greeted personally by one of two receptionists who takes care to be extra warm and kind. They take you to a nice conference-esque room and give you a slick folder with a built-in note pad and a set of articles and such that emphasize the group's empathy with people like you and strive to establish their credentials through personal testimonials.
The doctor comes in, shakes your hand, empathizes, asks you lots of questions about your experiences, calls you "dear" a lot, then leaves to create your preliminary treatment plan. Then the receptionist you talked to comes in to discuss their oh-so-reasonable fees and financing, and give you a personal testimonial about how she has fibro but is now symptom-free.

Honestly, it strikes me as more than a little cruel. They dangle the carrot in front of you, but how many people in this economy - especially here in Michigan - are going to be able to afford that kind of financial outlay? They want you to feel safe and have faith in their ability to help you; get you sucked in and hopeful so that when they lay the bad news on you, you'll pull out your checkbook. It seems like if they were absolutely on the up-and-up, they would come out with the price out front rather than give you the hard sell and then drop it on you.
Absolutely cruel, and made all the worse by the mask of kindness thrown over it.

So obviously I will not be pursuing treatment with those people. It's back to my wonderful GP to talk to her about trying some different treatment options. At least I know that any treatment she prescribes me will be supported by actual, peer-reviewed science.

Choices

2011-05-02T20:42:00.006-04:00

I spent today in bed. Why?

I made a choice yesterday. I decided to go to the Detroit Science Center with a friend, knowing that it required much walking and standing. So I took a Vicodin. We played with all the hands-on displays and laughed and talked. Had dinner, rented a movie... I got home around 1 a.m. And I enjoyed the hell out of the whole thing.

But today I got nothing but grief from my grandma. I love her very much, but I just can't seem to explain my experience in a way that she can understand. She has insisted repeatedly that I "should never do that again". That I shouldn't let others "pressure" me into activities beyond my capabilities. Partially due to some generational, messed-up views of gender relations (my friend is a man), she can't seem to understand that this was entirely my choice. And that it's a choice I will continue to make in the future.

If I let it, fibromyalgia could take so much more from me than it already has. I have lost the privilege of being without pain, of ever not feeling tired.
But what I love, what I enjoy, what I do - fundamental parts of who I am; if I never make a choice that is contrary to my purely physical self-interest, I would lose those parts of me. I could never stay up too late reading or talking. I could never go to a convention or festival. I could never spend an evening dancing. Never bake. Never go shopping with my mom.

I would rather suffer the short-term consequences of over-exertion than never exert myself in the first place. I maintain that while I have the right to do what I have to in order to maintain my health, I also have the right to determine when my quality of life is better served by ignoring my body for a short period of time.

I've learned not to let my pride force me into situations that are bad for me, but I've become skilled at weighing the potential benefit of any given activity against the potential consequences. This is, admittedly, more of an art than a science. I have a variable condition. I'm lucky enough that I can take a pill and pretty much ignore the extra pain incurred by physical activity until the meds wear off.
Did I think I'd end up utterly flattened today when I went out yesterday? No, but it was included in the set of possible outcomes I considered - which is why I did this when I knew I'd have today to rest if I needed it. Another time, I might have just been a bit sleepy today. Yet another (thankfully exceedingly rare) day, I might not have been able to read or write this blog post, let alone move. It's a bit of a crapshoot, but it's a gamble I have to take: for my sanity, for my happiness, for the sheer joy of participation.

It's far from my ideal life, and it's certainly cliché, but this is my line in the sand.
This far, fibromyalgia, and no farther.

[This post has been brought to you by FibroFog (tm) and this mash-up. I think it's reasonably coherent, but I'll check back later just in case. For my VI friends, the picture is a close-up of my baby brother preparing to draw a line with a feather on a sandy beach.]

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Stabbity Death! 5: Mr. Limbaugh? Kindly STFU.

2011-04-21T13:38:00.003-04:00

As I innocently set about making my sandwich for lunch yesterday, I was unfortunately subjected to the ramblings of the one and onlyRush Limbaugh. I try so hard to avoid this, but I can't always stay clear the first floor of my house during his program. My grandparents have much <3 for him. It's more than a little scary.
So usually I manage to ignore him, but he got into a line of maundering that made me roll my eyes so hard there was eyesprain. [Full transcript here, but beware the Limbaugh website.]

Sez he:

Where's Obama? He doesn't care. You know, he did what he could to get his PR spin and value out of it, now he's off to other things. He's got a Facebook deal this afternoon. What's he doing? Question-and-answer session today on Facebook at 4:45. He never talks to adults anymore.

I found out, by the way, that the number of friends -- Facebook as friends. We have a bunch of on our own Facebook page. And the White House, Obama has his own Facebook page. And I'm told that just 1% of the friends on Obama's Facebook page have signed up essentially to be part of this question-and-answer session today on Facebook. So aside from talking to union goons, he never anymore talks to adults. There must be some kind of fancy psychological name for such a syndrome. You could call it cowardice. But he's not out talking to adults about any of this.

Dear Mr. Limbaugh,

I have a facebook account. And - wonder of wonders - I'm an adult. A registered voter, even. As a matter of fact, 72% of young adults in the US use social networking sites, as do 40% of adults 30 and older. While I have issues of my own with Mr. Obama, the fact that he's using new media is not one of them. Kindly STFU about topics you can't even be bothered to have someone Google for you.

Yours in profound irritation,

Mandassassin

Sucker Punch: A Debbie Downer Review

2011-03-29T14:01:00.006-04:00

Once again, your friendly, neighborhood Debbie Downer has arrived just in time to slap down your uncritical engagement in pop culture - with a review of Zack Snyder's Sucker Punch.

This is a trippy, trippy movie; a movie that could use some serious trigger warnings after the previews. I could have used one for the first few minutes, since the movie started with explicit domestic violence. Let's see (please also consider this warning to apply to this review):

[Trigger Warning: child abuse, rape, violence, domestic violence, institutionalization, sexual slavery, confusion and delay, dragon abuse, etc., etc.]

Allow me to summarize a bit, for those who have no intention of seeing this or don't mind spoilers:
Sucker Punch is about a young woman whose mother dies - leaving all her property to the protagonist and her younger sister. Which their abusive stepfather doesn't like, so he kills the little sister and blames the elder, having her committed to a psychiatric facility where he's paid an orderly to (through duplicitous means) have her lobotomized in five days when the doctor arrives. So she won't be able to testify against him.
Then we start with the matryoshka-doll realities. The protagonist, from now on called 'Baby Doll', re-imagines the asylum as a burlesque theatre/brothel: the crooked orderly is the owner/pimp who gives her the nickname, the other patients are orphaned girls forced to be dancers/prostitutes, the psychiatrist becomes the dance instructor, and the 'high roller' is coming in five days to be Baby Doll's first 'client'. So Baby Doll has to learn to dance. As it turns out, she is the sexay-est dancer in the history of sexay. And her sexy dance allows her to access another reality, where she is offered a sword, a gun, an escape plan, and the chance to fight giant Japanese automata in heels and a short skirt. She comes back to brothel-world when she's done dancing, and enlists four of the other girls in her plan to get the four objects they need to escape.
[Summary over.]

---

Part of me really wanted to like this movie. I like to see the ladies kicking ass. I like to see woman-centered films being made. And, before I get into the negatives, I would like to acknowledge that even my feminist, Debbie-Downer self found positive qualities in this film. For one, it passes the Bechdel test . I liked seeing sex workers characterized as real people. I liked that part of the theme seemed to be refusing to participate in the oppression of other women. But the redeeming points of Sucker Punch are outweighed by the sheer dead weight of sexism that was heaped upon this poor movie.

Let's start out with the names. Ohfergawdssake, the names. The only identities these women have in this movie are the ones given them by the man who forced them into sexual slavery. Not one of them ever claims a different identity for herself. And the names themselves - Baby Doll, Sweet Pea, Blondie - are the condescending 'terms of endearment' you hear from the kind of man who would prefer that you run along and not bother the menz with your ladybusiness. This could have been a deeply subversive aspect of the movie - taking control of their own identities and creating a new definition for who, say, a "Baby Doll" can be. But, no.

I hear a lot of criticism about the clothing (or lack thereof) worn by the women of SP. A friend of a friend posted, echoing a common sentiment, "There is nothing feminist about watching a bunch of nubile young women in skanky outfits run around with weapons." I'd like to suggest that there is nothing feminist about slut-shaming either. Honestly, I don't care if they were wearing parkas or running around naked: this film would still be exploitative and sexist. For example: the problem isn't that Baby Doll is wearing a short skirt - it's that the camera insists on looking up her skirt while she's fighting, turning the audience, willing or not, into voyeurs.

I'm also disappointed in the lack of characterization of men in this movie. They're horribly two-dimensional stock characters: evil stepfather, faceless background dude, lechers, wise old sage, evil pimp. And all of them (excepting the sage) are easily led around by their cocks. Yup: helpless slaves to sexy-dancing women, all of 'em. Except when they're brutally oppressing those same women, of course. Not only is this nonsensical, it's also a downright insulting and dangerous caricature of men.

The biggest problem I saw in this movie is that the only power women have is based on a particularly passive sexuality. Even when she actually directly fights back in brothel-world, Baby Doll only succeeds in using knives on men who are being distracted by their attempts to rape her or Rocket.
Repeatedly throughout the film, Baby Doll does her sexy dance to distract the men so the other girls can get the items they need to escape. We see her standing, still and in a passive stance, while the music starts; but then we're in the ass-kicking reality as soon as Baby Doll disengages her mind from her body, which is apparently back in brothel-world, "gyrating and moaning" for the benefit of various menfolk. As my theatre-going companion said, "The male gaze is all over that movie."
And I don't know about you, but - as a woman who does not in any way have to dance sexy - when I choose to dance provocatively, I do so fully engaged with my body and with a sense of joy in movement. I own my sexuality; but for all that Baby Doll uses hers as a weapon, she is never allowed ownership. In Sucker Punch, sex and sexiness are things you do to keep men from hurting you. This is a terrible, horrible, no-good, very bad theme.

In short, I can see ways this basic plot could have gone in which it would have actually been feminist. Or at least not horribly, and apparently accidentally, sexist. When actual sexists will find nothing to disagree with in your work, fauxgressive 'irony' just doesn't work as an excuse. Because ironic sexism? Still sexism, actually.

An Idle Musing: I Didn't Realize...

2011-03-22T22:26:00.004-04:00

... just how bad this whole "dealing with chronic pain thing sounds when you lay it all out for someone.

I was out for dinner with a gentleman of my acquaintance. He mentioned that having previously taken karate is helping him with knowing what to do with his body now that he's working out at the gym. I casually said that, while I usually have the benefit of bodily awareness granted by years of dance training, I occasionally lose track of whole sections of my body - as my brain starts ignoring them because of the excessive pain. This is why I am constantly discovering new and interesting ways to injure oneself accidentally. I got this look from him that seemed halfway between, "My, how interesting," and "Holy shit!".

In another conversation with a friend, I was asked some related question. I proceeded to explain that while I have a constant level of pain, I get more depending on how much I do and have completely random sharp pains as well. Also, muscle spasms. He said to me, "Wow, that's terrible!". And my inner reaction was a blasé, "Oh, is it? I suppose so."

To me, all the aches and pains and daily nonsense of living with fibro have become routine. Yes, there are times (like in my previous post) where I'd just like to curl up until the PAINPAINPAIN is gone. But mostly, I don't think about it anymore.

I can only vaguely remember what it felt like to not be disabled. I have all my memories, of course, but more elusive is remembering how it actually felt to be pain-free and truly not at all tired. Indeed, it takes someone pointing out the abnormalities in my experience for me to even recognize them as abnormal. I suppose you really can get used to just about anything.

Late Night Micro-Post II

2011-03-09T00:45:00.004-05:00

You know, I try so very hard. Not to let pain rule my life. Not to complain. Not to make a big deal out of it to other people.

Not long ago, I went to the sports medicine doc for my ankle injury and he was poking and prodding and it hurthurthurt - but I didn't scream and I didn't cry and I put on my blank face.

But sometimes, I just want to curl up in a ball until it doesn't hurt anymore.
And it is so fucking hard to admit that.

Why My Needs Aren't Special

2011-02-18T00:10:00.006-05:00

So, over at Shakesville, the Question of the Day yesterday was, "What is your least favorite political euphemism?" I answered:

I second a lot of these. One I haven't seen yet, though it isn't solely a political euphemism, it makes me all rage-y when politicians (and others) use it: "special needs". The needs for access to society. public spaces, and health services do not become "special" because the person in question has a disability.

Another commenter posted:

I would disagree with that. I feel that 'special needs' are, in fact, special and I'm glad that the term has supplanted older, more pejorative terms.

And asked what term I prefer.
I was looking to just post a quick reply, but it got me thinking too much (Thank you, fellow Shaker!). I realized that I was writing a bit of an essay and didn't want to derail, so I decided to post my response as a blog entry instead.

Here goes:

I agree that more pejorative terms exist, and I'm happy to see the use of some of them fading. The main problem I see with "special" is that it frames the needs of people who have disabilities as something *extra* that other folks aren't getting. Which, in my own experience and those of many other PWD of my acquaintance, among other things lends itself to excuses like, "Well, 'normal' people don't need [the transcript, sign interpreters, ramped spaces, descriptions of visuals, disability parking near an event, etc., etc., ad nauseum], so why should we have to do something 'special' for just a few people?"
Temporarily able-bodied and/or neurotypical people have their needs accepted as a given: stairs up to the next floor of a building, materials provided (like books) that they are able to access, doorways they can fit through, and on and on.

Until the needs of people with disabilities are viewed as not 'special', but exactly as much of a given as stairs to the second floor, we are going to have to fight for every inch worth of accommodation we can get.

I have lost count of the events I've wanted to go to where accessibility was not even mentioned in their information. So I call or write; half the time the person on the other end has no clue about access, a quarter of the time no one bothers to get back to me, and the rest is divided between people who tell me what I need to know but don't bother making the info easily available to others, tell me they're sorry but they can't bother thinking about access with an event to plan, or the rare shining few who have the information and make sure that it becomes available to others as well. This is just a tiny tiny tiny portion of the extra effort I have to deal with just to live my daily life in a world that thinks my needs are special.

"Special" also has this connotation of infantilization that very much bothers me. I have actually heard more than one person say of my dear friend who has CP, when he's fallen or just been a goofball, "Oh, it's OK, he's special." (Which goes back to this post, but here I'm going to keep my focus on this particular term.) I've been sitting in my powerchair and been patted like a puppy or a small child and told I was "special" by a complete stranger. In my experience, those who view us as "special people" are often the least likely to treat us like adult human beings.

My preferred term, though I respect the labels people choose to identify themselves, is "people with disabilities" or "PWD". This is also, I understand, the preferred usage among many in the US; while in the UK (and Australia?) "disabled person" is more widely accepted. I know that some people don't like to apply "disabled" or "disability"; but I ascribe to the view that, while a given condition is not necessarily "disabling" in and of itself, we are "disabled" by social and public spaces being set up in a way that often excludes us.

[Edit, 2/28/11 for typo and clarity of the last sentence.]

This. A Million Times This

2011-02-09T16:56:00.002-05:00

I used to be a pro-life Republican. - andrea grimes

Getting Territorial

2011-02-06T15:16:00.001-05:00

So, my powerchair has given up the ghost for the time being. The egregious amount of salt the university puts down has worn down the gears, which won't turn the generously salted drive wheels. Not to mention the atrocious squeaking sound from salt in the casters. I can't afford to fix it, and even if I could, I'd have the same problem. Thankfully, I can drive between classes, but there's the problem of the torture devices this university calls "desks". So I talked to DSS to get better chairs put in my classrooms so I could attend without severe pain.

I walked into my Theatre class shortly after I got the chairs placed and found my professor. In my chair. Now mind you, my professor is a lovely person who has recently broken her leg. I understand why she might appropriate the comfy chair. It worked better for her to sit at the table closer to the class, rather than to the side behind the professor's desk. Also, unlike the other office chair in the classroom, my chair has arms which made it easier for her to get up and down. I explained the situation for her, pointed out the "Reserved for a Disabled Student" sign on the back, tried to get her to understand why I needed that chair specifically, gave up, agreed to try the armless office chair for a class period, and let her know what she could do to get her own "armed" office chair from Building Control.
You see, the problem wasn't that she isn't a perfectly nice person. It was that she simply doesn't understand what that chair represents: hours of hard work, frustration, and pain on my part.

When I first went to DSS to request chairs, they had Building Control put "padded" chairs in my classroom. By "padded", I mean thirty-year-old faux-leather print vinyl-covered chairs; they probably were padded at some point, but after thirty years foam acquires the consistency of granite. How do I know they're thirty years old? Well, after a sneaking suspicion, I called my mom, who verified that these were the same chairs that were in the student center when she was here in '81. Yeah. I tried, but an hour of that made my tailbone angry at me.
So I called DSS again and left a message that the chairs were unacceptable - and proceeded to miss a day of class, because I didn't have anywhere to sit. They called me back, and the secretary told me she had some chairs I could look at. I went in, and it turns out that they have a set of chairs bought specifically for people with back pain. Why it didn't occur to them to offer me those in the first place, I don't know.
Another day of class down the drain, but finally I have chairs in my academic classes. But, as of this writing, I still don't have a chair in choir.

So, professor, forgive me if I'm a bit territorial about my chair: it took a lot of work to get it where it is.

Addressing Abortion

2011-02-04T14:18:00.004-05:00

[TW for sexual assault references, asshattery]
I put this Shakesville post up on my facebook last week - it's about H.R. 3, the No Taxpayer Funding for Abortion Act, which allowed Medicare funding for abortions for rape victims only if it was "forcible rape". Which is just fucked up, though thankfully it's tanked since then.
The real point of this post came to me when two of my friends, pro-lifers, commented on the link; they agreed that the redefinition of rape was wrong, and then made sure to make it clear how terrible taxpayer funded abortions are. I decided to keep the peace over there, keeping the conversation on the redefinition of rape, but I've been bursting out of my skin to write this post ever since.

First of all, whether you agree personally or not, abortion is a LEGAL medical procedure here in the US. Already, Medicare only funds 80 or 90 abortions per year - because it is already restricted to cases of danger to the woman's life, rape, or incest. If we have federal funding for LEGAL medical procedures, why is abortion not included? I keep hearing how, "I don't want my tax dollars going to fund murdering babies!" Pick up a penny on the street and you've made back whatever you might have contributed toward a life-saving abortion - times 1000 or so.

And why is abortion "murder"? If I choose not to donate a kidney to someone who needs one, no one would call that murder. Sure, if I donate a kidney, I could potentially keep someone alive. It's a great thing to do if you can. But what if I have a health condition that could kill me or make me very sick if I had surgery? If I can't afford the hospital bills, medication, follow-up doctor's visits, etc.? What if I have a job that won't allow me the time off, and I need to feed my family? (61% of women who have abortions already have one or more children.) If it isn't murder to not donate a kidney to a currently-existing person, even though ze might not make it, why is it murder not to donate one's uterus to a potential person?
Anti-choice advocates seem so concerned with investing fetuses with the same rights as a full-grown adult, but even if you accept that (I don't.) the analogy holds; why is is not murder to deny someone my kidney, but murder to deny someone my uterus?

Just like whether or not I donate a kidney, whether I donate my uterus is an intensely personal decision that no one can make for me. People think that Roe v. Wade makes abortion legal and accessible, but anti-choice activists at the state level are chipping away at the ability of women to access safe and prompt abortion care with mandatory waiting periods and ultrasounds, parental notification laws, and resistance to requirements that they honestly label "pregnancy crisis centers" run by conservative orgs as not really offering abortion care. As though women are too stupid to know what they're doing when they choose to have an abortion. Almost two thirds of them already have children! Clearly, they are familiar with how the process works.

As a woman whose body is unlikely to be able to handle a pregnancy without severe repercussions, I've been keeping a watch on what this Congress is doing. Quite frankly, it's scaring me. Now H.R. 358 is on the table, which has a provision that would allow hospitals to refuse to perform abortions to save the life of the woman. Please go here and contact your representative:

It's Because She's... You Know

2011-01-10T12:54:00.004-05:00

I have never been a perfectionist. But now I have this odd feeling that I have to be. In my lovely red power chair, people are watching me constantly. If I fumble something I'm holding, if I kind of ram a door frame, if I talk to myself out loud for a moment - I get this look. This "Aww, she's disabled" look. It's as if having a visible disability has revoked my license for the simple, everyday human screw-ups that others get a free pass on. I can be late to class, and it's assumed it's because I'm disabled - not because I walked out of the house and realized belatedly that there's ice on my car. I have a friend who used to take this to extremes, being half an hour late to class - sometimes legitimately, but fairly often just because he could get away with it.

There is a poisonous tendency to presume incompetence on the part of people with disabilities. It makes me feel like I need to be perfect in manner and appearance in order to be respected as an adult human being. The problem being that, like any other human being, I'm not perfect and I never will be.

So I'm giving myself permission to be the person that I am - no more and no less. I will educate, educate, educate as much as I can to try to change peoples' preconceptions - but in daily life? Screw what they think.

Link of Awesome

2010-12-17T14:42:00.001-05:00

How Not to Write About Disability in Your College Application

Go there. Read it. Feel the awesome.

Gettting Away With... Disability?

2010-12-17T13:46:00.011-05:00

[Adapted from a comment on made at this thread at Shakesville.]

So, there's a thread going on Shakesville discussing disability limitations. Not limitations imposed by the actual disability - rather, limitations imposed upon us by others because of their perception of disability. I was struck, like another commenter, by how little I had to think to come up with these.

So, somewhat expanded, here they are:

Limitations at home-

I can't get away with feeling comparatively good and spending time with my friends - because, clearly, if I'm going "out" most nights (never mind that we spend all night vegging and watching movies at B's place), I can't possibly be in pain.

I can't get away with obviously being in pain, because I should just push through it and get over it. And why am I whining about it because obviously that won't change anything.

I can't stay home from school because I'm in overwhelming pain - I have to say I'm "sick". Because having a cold is a valid reason to miss class, but my nerves telling me (incorrectly) I'm traumatically injured or possibly ON FIRE is not.

I can't get away with using different kinds of mobility equipment from day to day in front of the same people. Because clearly, if I can walk unassisted one day for x distance, I shouldn't need to use a cane the next day, and my wheelchair is right out. No matter how many times I explain "variable condition"...

Limitations in public life-

I can't tell people in public spaces, like I couldn't tell my suitemates at college last year, that the reason I can't deal with smoke or certain chemical smells is due to Multiple Chemical Sensitivities - a condition no one seems to understand or believe in if I explain. I have to say I have asthma or "an allergy", which I most certainly do not have, to get even a minimum of understanding or accommodation.

I can't get away with not contacting my professors to explain an absence the day of, even though on a bad day I can't put a proper sentence together to e-mail and don't have the spoons to get past my mild social anxiety to make a phone call. After all, if I'm a student and I'm disabled, there are certain hoops I have to jump through so I *deserve* accommodation. >_<

I can't get away with hopping up out of my wheelchair and chasing my scooter-driving friend for a few feet after he stole my tasty fruit juice, because no one could ever need to use a wheelchair and still be able to walk/stand/run short distances. Also, cripples aren't playful, and are certainly never physical. (extra sarcasm)

And an old one - I couldn't get away with showing affection for my visibly disabled ex-boyfriend/current juice-stealing friend (pre-wheelchair-having for me) without getting looked at like some kind of pervert.

Digression/Anecdotes (optional)-

Fav. example of this last one: In the uni cafeteria, he raced away from me in his scooter, so I chased him, he stopped suddenly and I crashed into him - we crack up. Everyone nearby had a horrified look like, "OMG she just ran into that disabled kid!" As we're laughing I hug him and kiss him and there was a visible (and no less horrified) double-take like, "OMG she just KISSED that disabled kid!"
This was also fun when I stayed with him in the hospital when he had surgery to replace his Baclofen pump. His neurosurgeon, one of two in the state who can work with a pump like his, happened to technically be a pediatric neurosurgeon. Thus we were in the pediatric ward the whole time. I was repeatedly mistaken for his father's trophy wife, even by people who had reviewed his records and knew his age! I put this down to the "disabled people aren't sexual" thing; though, I did get an "OMG PEDOPHILE" look from the surgery waiting room receptionist after I corrected "...Mom??" with "girlfriend", until I hastily added, "It's OK! Really! HE'S TWENTY-ONE!!"

Late Night Micro-Post

2010-11-30T01:40:00.002-05:00

Dear Nerves,

As if I needed any confirmation that things are seriously cross-wired in there, there is now a spot over my ribcage that is feeling cold instead of pressure when I touch it. I admit to this being an improvement over the two nights of having to strip naked and remove my ring and ear piercings before I could ditch that oh-God-oh-God-IT"S TOUCHING ME feeling. I appreciate the improvement. This is kind of nifty by comparison; but, on principle, y'all might want to look into that.

Kthxbai.

Right Now...

2010-10-15T10:52:00.006-04:00

I'm so angry, I'm shaking. Or I'm scared. Or both, I suppose.

I got to school today, parked, someone parked next to me and bounded up to the door to smoke and chat. I try not to judge people, since to most I wouldn't look 'disabled' when I'm not using my cane or wheelchair. But while I was getting my chair out, I looked over and, sure enough, no plates, no permit. I debated on the roll up to the door whether or not to say anything.
I paused for a moment and said, as nicely as possible, "Excuse me, but there are people who need to use that space. [pause in which she gave me the hairy eyeball] That's pretty rude."
She says back to me nastily, "Well! I was only parked there to come talk to them [her friends] for like, five minutes!"
I said, "Well, thank me for talking to you nicely instead of calling the cops!"
"Well, fine! I'll go move it!" and she went off in a huff.
So I went in and, shaking, waited for the elevator. One of her friends walked by and actually apologized for her, which made me feel a little better.

It makes me angry to see people being so inconsiderate. Sure, most of the spaces were empty at that exact moment, but they're always full by the time I get out of class. I get this kind of rage when I run into people who are so entitled that they think it's just fine to prevent someone else access (to a building, and thus to whatever is happening inside it - education, business, community involvement) just to save a minute or two. You are not a special snowflake! You do not get to screw someone else over for your convenience, and expect no criticism or consequences!

Something I don't like to admit is that I get scared every time I speak up like this. Sure, some people will get all shame-faced and sheepishly go move their car. Some people will try to shame you, probably because they're ashamed of their actions. Others might get belligerent.

I'm actually sitting in class now, feeling like I should have stayed outside while she moved her car, because I'm just a skosh worried that she's the sort to go in for property damage. Ah, well. I bought my car in September, and we're getting it repainted anyway because the hood came pre-keyed.

When someone responds to me like that, it makes me feel small. Yeah, yeah, "They can only do it if you let them!" and all that. I can shake it off - but that doesn't keep me from feeling it in the moment. What she was saying to me in the moment was more that just her actual words, it was, "How dare this uppity cripple tell me what to do!".
But people like her are the reason I will keep speaking up. My hope is to put a face on "disabled", to make people like her see that there are real live people being effected by their thoughtlessness.

What a Difference a Chair Makes

2010-10-13T17:27:00.002-04:00

So last April, at the very end of the semester, I took my powerchair over to the student apartments to visit a friend of mine. Unfortunately, my chair is rather underpowered for outdoor use and I couldn't avoid a dip in the pavement that sent one of my casters into a crack, popping the tire right off it. The rubber of the tire was too thick for my dad to get it back on without cracking the wheel, and I didn't have the money to get it fixed.
It didn't end up impacting me much then, since classes were over. I ended up getting hired at a summer camp three hours away - it was small enough that I didn't need to bring my wheelchair just to get from my bunk to the office and the dining hall.

I pretty much spaced on getting the repair over the summer - I was only home for two weeks until the end of August. When I came home to stay, classes were starting soon, so I got in touch with Rich, my wheelchair guy. Turns out, it would've cost me $80 in parts and labor to have him fix it. Gah.

I went for about a month without my chair, and it was pure torture. I'm commuting this year, so I didn't have a ton of walking to do, but walking wasn't the only problem. I was at the same time enjoying my every-10th-week lady-hormone fest, which not only gives me extra pain but also causes me to have migraines at the drop of a really uncomfortable chair. Now, you have to understand the horrible chair-desk things that they expect students to sit on here. There are several varieties.

The flat-backed, tiny flip-down thing, poorly-padded kind:

The "ergonomic" flimsy piece of junk with a back that's springy and bounces back and forth if you move:

And, brand new this year and certainly not improved, the hard plastic tulip-shaped chair on wheels- in green and rubber-duckie yellow. (More on this travesty in my next post):

I had to leave early three times because of the migraines I was getting sitting under florescent lights in those hellish butt-traps.

But then I remembered a powerchair website I had found almost a year ago, that said you can replace the caster wheels on a powerchair with training wheels from a kids bicycle. Final cost? $25.99 and twenty minutes of handing things to Grandpa while he put them on for me. Halleluja.

Image: My left caster, complete with a tiny leaf that came along for the ride today.

Just the ability to sit in class, without excess pain and tension, is something I can't take for granted anymore. I am certainly enjoying it now.

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Satellite Cat

2010-10-13T13:36:00.005-04:00

Satellite Cat is interceptin' ur signal.

Image: My friend's cat (he's grey with a white nose, belly, and legs), wearing a plastic cone-of-shame from the vet, with his paws over my hand and his eyes glowing blue-green.

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The Attack of the Return of the Blog!

2010-10-11T15:45:00.002-04:00

Obviously, I haven't updated in quite a while. No big reason, just life. I realized, though, that I missed the kind of writing I was doing here. Writing for reasons that mattered to me, versus only the topics dictated by my professors.
So, updates:
I'm still in school, hopefully I'll be out in August.
I spent this summer working as the secretary at a summer camp for blind and visually impaired children and teens. I'm sure there will be a post or two on the experiences I've had there.
Happy National Coming Out Day!

On 'Evelyn Evelyn'

2010-02-17T21:05:00.003-05:00

In case you've missed the controversy, you can read up on the disability fail of Amanda Palmer's latest project, "Evelyn Evelyn", in these two posts at FWD. I recently read her partner in the project, Jason Webley's fairly thoughtful blog post on the subject, linked off Neil Gaiman's facebook page. It was the comments that got to me though. So I posted this in the thread, but thought I should repost it here, since Lord knows it's long enough to be its own post.
Enjoy:

@ Andi and others - I've always loved Amanda's work; and, as a disabled woman, this concept didn't bother me unduly at first. It's not much different the same old story we always see - I mean, "disadvantaged" person(s) gets helping hand up from "normals". It's not new. It's not a great representation of difference at all, but it's not so shocking to me as to take up my time in protest.
Well, that was until I saw the general response to those people with disabilities who were inclined to deal with the ableism involved - because when you respond to people pointing out possible ableism with, “But I'm not offended, so no one else can be - BECAUSE I AM THE FINAL ARBITER OF WHAT PEOPLE CAN BE HURT BY..." Well, you kind of prove the point.

Additionally, even by the shoddy government definition of disability, the twins would be disabled - having a functional life impairment. Try driving, or shopping for clothes, or trying to live in a world that's just not built for people shaped like you. Not to mention the reactions of so-called normal people. Tell me with a straight face that people thinking you're a freak isn't "disabling" - to getting a job, making friends, going to the goshdarn store for some groceries.
Where you see a fun "sideshow/carnie" theme, I see a reminder of when people like me only had places in freakshows and institutions - or hidden away in a single room to live out our entire lives. When we were forcibly sterilized, experimented on, neglected, and outright killed. Oh, wait - those things still happen to disabled people today - even in the good old US of A.
Now tell me again why this project shouldn't squick me out at all?

I'm not saying that this project shouldn't exist and move forward, but that Amanda and Jason should think hard about what they're putting out there and acknowledge that (intentional or no) they've created something that isn't "harmless fun" - Jason has made a good start. At least Rob Zombie and similar admit that they are creating objectionable art, and not attempting to play it off as perfectly inoffensive "fun and creativity".
I don't think anyone's advocating for censorship at all, but simply attention and responsible thought on the part of people who possess a great public platform.

Carolyn Hax

2010-01-11T11:42:00.000-05:00

I knew there was a reason I liked her.

PWDs And Communion In A Catholic Community

2010-01-07T13:53:00.012-05:00

As I’ve mentioned before, even my marvelously liberal Catholic church (SJF) has some hit-or-miss moments. One of those, unfortunately, includes a gap in the education of Eucharistic ministers when it comes to giving Communion to some people with disabilities.

Since they’re pretty good about making changes when they become aware of an issue, I’ve written up a set of guidelines that might help resolve this.

And the issues have been major.

My friend Brian uses a wheelchair, and is of a more conservative liturgical stance – meaning that he prefers to take the cup and drink, rather than the usual SJF practice of taking the wine by intinction (dipping the host into the cup). This has caused all kinds of problems for him with receiving Communion.

He has had the person holding the cup walk away from him before he could receive, because he’d put his hands on his wheels to move over to the cup after consuming the host. This happens almost every time.

He’s had the minister ask him a completely unrelated question or compliment his singing as he was drinking from the cup - again, a common occurrence. (This doesn’t happen to TAB congregants.)

Brian has gotten so frustrated with the constant disruption of what should be a sacred moment that he refuses to come back to SJF until the ministers have been educated on disability etiquette issues.

Another friend, Laura, whom I’ve mentioned before, has also visited my church. It’s usually a bit off when she goes to receive, but one particular incident was a complete train wreck.

I received first, and Laura had already consumed the Host. She got to the minister with the cup, who (instead of speaking the usual verbal cue) turned to me and mouthed silently, “Is she going to…?” – then proceeded to attempt to put the cup to Laura’s mouth. With no warning. Laura could feel something approaching her, of course, and was leaning back with an expression that clearly said “WTF?!”. I quickly reached out and grabbed the cup, redirected it into Laura’s hands and said (a bit pointedly, I admit), “The Body and Blood of Christ!”

So the following is what I came up with to send to the person in charge, in hope that she’ll distribute it to the Eucharistic ministers.

Suggested guidelines for ministering Communion to persons with disabilities:

As a Eucharistic minister, it is your responsibility to extend the hospitality of the table to those receiving Communion. It is important also to preserve the sacredness of receiving for members of and visitors to our faith community. The following are a few simple ways to ensure a more reflective and holy experience of receiving the Eucharist for people with disabilities.

For persons having mobility disabilities:

1. People who use crutches, a cane or a wheelchair may take more effort and time to move from the minister holding the hosts to the minister holding the cup. Wait to see if the person has definitely moved away before assuming that they do not wish to receive both species. Do not move away or offer the cup to the next person just because they have put their hands to their wheels or moved onto their crutches.

2. By the same token, it may be difficult for someone with mobility issues to follow the common practice here at SJF and take the Blood by intinction. It is already practice that those who wish to do so may take the cup, so keep this in mind especially when ministering to someone who is mobility impaired.

3. If you must ask a question, do so in a quiet and respectful manner, keeping in mind the sacredness of the moment.

For persons having visual impairments:

1. When ministering to someone who is blind or has low vision, be especially sure to give him/her the verbal cue, “The Body and Blood of Christ,” with both the Host and the cup.

2. Place the cup into or touching the person’s hand, so that they may choose to take the Blood by intinction or to drink from the cup.

3. Do not look to or ask his/her sighted guide, should one be present, if the person with the visual impairment would like to receive. He or she has come up to receive, and if wishing to decline the cup will certainly do so him/herself.

Advice From Out Of The Past

2010-01-01T18:29:00.004-05:00

Wow.

I subscribe to Colombia University's Health Q&A column "Go Ask Alice!". They answer about five questions each week. This week, the e-mail I get contained an oddly familiar headline. I clicked through, and surely enough, it was a question I had submitted - more than two years ago. Go figure.

The answer was actually fairly insightful, so if you want, you can check it out here. It actually covers everything we figured out for ourselves and manages to not have disability fail. Even though it was too late to give us any pointers, maybe it can help someone else.

Good job, belated advice columnist.

I Take It Back: Starting The New Year Wrong

2010-01-01T17:47:00.005-05:00

I spoke too soon. Oakland is going to be ridiculous again - they're appealing.

Apparently, allowing Micah to live on campus does not serve the interests of "matriculated, degree-seeking students." I somehow can't see how Micah and students like him being able to live on campus is hurting my interests.

I do see how OU spending thousands upon thousands of dollars to fight him in court is using money that could be used for just about anything else. I thought we were so strapped for cash that they had to gouge the students for more money - but OU can waste resources to keep a paying student from paying them more money for housing? WTF.

Article here.

Starting The New Year Right: Micah's Win

2009-12-31T20:16:00.001-05:00

For those of you who haven't heard, Micah Fialka-Feldman has been fighting in court for the right to live in the dorms at OU for two years now. Micah has a cognitive disability and is enrolled in the OPTIONS program, and the judge ruled that denying him access to the dorms was based "on prejudice, stereotypes and/or unfounded fear."
He can move in January, barring an appeal.

Congratulations, Micah!

Check out the story here.

One Of These Things Is Not Like The Others...

2009-12-31T18:56:00.006-05:00

Has anyone else seen this choice bit of ridiculousness?

This is Jeep's shiny new ad campaign targeting women.

I don't have my headphones, so no transcript. Basically, it shows a woman going to a high-end salon while voice-over woman gushes about how - even though she just waited two months and paid two hundred dollars to have her hair done there - there's still nothing like the feel of wind in her hair in her Jeep Wrangler. Which she drives in the end of the commercial while voice-over lady slings the "I live, I ride, I am" slogan.

Just for funsies, let's see how Jeep has previously advertised their various vehicles.

Every visible driver in this montage of commercials is a man. Because women don't go off-roading (unless macho man drags them along), we don't drive friends/romantic interests to beaches; we don't drive through mud, or swamps, or on the beach, on winding country roads, in the city, with teh hot babez, or through small lakes.
We don't sing songs with furry woodland creatures, or hold races in a giant sandbox filled with giant toys and construction equipment.
We also don't drive around giant Teletubbies or behind what appears to be Devo singing "Whip It". (Okay, I'll almost give them that.)

I can almost hear the conversation that must've taken place in the Jeep advertising team's lair:

"So... should we put in some driving through swamps or something?"

"No, you fool! Women don't like swamps!"

"So what do they like?"

"Um, getting their hair did...?"

Oy vey.

What exactly are they saying to us here? Let's see if I can translate:

Ladies, you should be willing to spend ridiculous amounts of money on your hair, because this is normal. This is because women are frivolous. But you should be more like a man - like the title of the spot says - "It's Only Hair". So you should, not being a detested girly-girl, be nonchalant about doing things that will obliterate your new 'do. Which just cost you two hundred dollars. But you're willing to blow that anyway, because you are frivolous - but also cool with the dudes.
Please be frivolous in our car. It will totes make you cool with the dudes.

Way to insult your target demographic in ways they might not notice. Do I really need to explain further just how ridiculously sexist this is?

...

Didn't think so.

Also: Holy classism, Batman! The 2010 Wrangler sells for an average of $24,000.
The women who might be buying a car in this price bracket? Not terribly likely to be able to blow two hundred bucks on a hair appointment. Yeah, sure, they're trying to grab hold of the desire to be like women who can - but in this economy especially, they're just making their product seem out of reach financially to the people most likely to purchase it. I thought it must be a more highly-priced vehicle until I looked the prices up just now.

Oops.

Somehow, Jeep, I just don't see the ladies lining up for this one.

Random-ness

2009-12-21T23:53:00.008-05:00

I've promised myself that a real blog post shall be forthcoming before I've run out of December - but in the meantime, ninjas and reading together equal *win*.

Hold me closer, tiny ninja...

And check out that shuriken action:

These are for my sisters for Christmas. They're in seventh and eighth grade, respectively. I hope they like them!
From this pattern, shuriken of my own design.

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Thanksgiving Link

2009-11-28T22:43:00.001-05:00

This.
Times eleventy-billion.

Mama's Got A New Pair Of Wheels

2009-11-25T20:47:00.010-05:00

Today, the nice man from Beaumont Medical Services brought me-

- my new baby, the Invacare At'm! My insurance company approved it last Monday, and then my wheelchair guy spent three days trying to get a hold of my busy self. He had to ask me the all-important question: "Red or blue?". Red, of course. (I feel bourgeois just thinking that my wheelchair matches my iPod.)

A side view:
I'm in love. Dis-assembly/reassembly are quick and easy. The heaviest part is the battery. It's not very big, but it's really dense.

So we went out together for the first time today. I topped off the battery and went off to Gender Communication, my only class today. If it weren't for a friendly fellow passenger to hold the door, I wouldn't have made it off the elevator in my dorm building - I'm not very good at reverse yet. My new mantra? The chair is not a car. The chair is not a car. But I made it outside.

And was promptly almost run over by a frat boy on a bike. Oy vey.

The rest of the ride was pleasant, although I have to say that the chair does not do well with hills. On the slope up to Elliott Hall, my speed was comparable to that of an arthritic turtle. The suspension is good though, even on the seriously cracked up pavement here at OU.

Pleasant, that is, until I actually tried to get into the building. In anticipation of the university closing for Thanksgiving break, someone had turned off and locked the automatic doors to Elliott. Because no students with disabilities have classes on the day before break. Erm, oops.
So I parked outside the classroom and placed a call to Disability Support, who will contact the appropriate party- hopefully, they'll remember this for the next break.

It felt different today to sit in the back of the classroom in my shiny red chair. Physically much more comfortable, but psychologically less so. I usually sit up front, but the arrangement of the Elliott classrooms is such that the only space a chair can get to is an empty space in an alcove in the back. I wasn't about to leave three grand worth of highly portable equipment sitting in the hall, and my usual spot was taken. So I stayed in my chair instead of leaving it in the alcove without me.

I had a nice conversation with one of my favorite (feminist) classmates about my shiny new electric baby. I got a few looks, and a particularly long stare from one guy. I didn't really mind him though; it was an honest look, and a thoughtful one. The furtive glances bothered me more - like it was suddenly unacceptable to look at me at all, except to steal a glance - like a child peeking through a parent's fingers to steal a look at the gory part of a movie. In the same vein, it was hard to see how people looked around me. They would look around the room, only to jerk their eyes away just before they reached me. Like OMGWHEELCHAIR!!!111!! MUST LOOK AWAY!! CEILING!!! FLOOR!!!! DESK!!! WHEEL- WAIT, NOOOOOOO!!!!1111!!eleventy-one! OTHERWISE THAT GIRL MIGHT FIGURE OUT THAT SHE'S SITTING IN A WHEELCHAIR!

Um, already aware of that, thanks.

So I set out for my room after class; the other automatic door out of the building was working so I had an easier time getting out. A fairly uneventful trip back, until I reached the bridge over Beer Lake. As I was approaching, so was a guy who lives on my floor- on his mobility scooter. I was ahead initially, but he totally smoked me on the approach. And the conclusion was foregone as we reached the up-slope of the curved bridge: slope = arthritic turtle speed for me. I experienced a moment of motor-envy as he zipped off.

I was getting a bit chilly, so while he sped off around the building to the side that has the automatic doors, I went to the regular old doors in the middle. With an unfortunately not-silent "Ha ha!" I opened the door all by my little lonesome, earning interesting looks from a passerby and the desk staff.

I got into my room (this time without bumping into any walls or door frames -score!) and my new chair served me once more as I left for home for Thanksgiving - with the motors disengaged, as a luggage cart.

Now, my chair is folded up and safely ensconced in my trunk while I've brought the battery in to charge.

Like so:

Today was a good day to roll.

The Cut

2009-11-25T20:32:00.009-05:00

I'd like to introduce you to the cut. The cut that put my entire right arm into so much pain I could barely stand the slightest touch for two days.
Here it is:
Hard to tell where it is? How about now:
Still a little fuzzy? Try this one:
Yep, that's it. That tiny, two millimeter slice from a plastic chair. Must've hit a nerve or something. I've had worse injuries, but I've never had my nerves get messed up like this before. Ick.
Fibro? Not fun.

Description: A series of three pictures of my hand, each zooming in a bit closer to the teeny tiny cut just above the base of my thumb.

Karma, Baby, Karma.

2009-10-16T19:12:00.017-04:00

Today, in a rare occurrence, my faith in the universe has been restored.

Lately, my living situation has been interesting, and not in a good way. I live in the dorms here, and the rooms in my building are suite-style. So it goes:

room <=door=>bathroom<=door=>room

I have a room to myself, but I have two rich sophomore party-girl suitemates. When they first moved in, a few weeks after school started, I very nicely explained to one of them that I have a disability which is directly affected by how much sleep I can get, and that I needed them to not dry their hair or talk in the bathroom when they got up at seven-thirty in the morning. Simple requests, a little picky, but necessary to maintain my health. Everything else was fine, and we were cool.

Then around the end of September, I stepped into the bathroom one night and it smelled like the inside of a bong. This is especially fun because I happen to be violently allergic to pot. (Yay, Benadryl.) Once again, I was nice. I didn't report them; what they do with their bodies is none of my business. I spoke to suitemate A. the next morning, who assured me it wouldn't happen again. I bring this up mostly to illustrate that I could have been a 'bitch', but chose not to.

Until this last Tuesday, when I opened my bathroom door only to have my room inundated with cigarette smoke, to the point where it smelled like a bowling alley. I had explained earlier that I can't handle smoke of any kind. So fine, I Febreze'd the hell out of it and would have just reminded them nicely the next day.
Well, the next day rolled around, and guess who's drying her hair in the bathroom at 7:45 a.m.? Once again, fine, would have said something later that day.

But later that morning, when I usually would have left my room already, I happened to overhear them talking in the bathroom. (Which is not hard, with thin doors.) Basically, one said to the other that she had done it purposefully just to fuck with me, and then moved on to quieter "Well, she's just so mumblemumblemumble..." and such. Mind you, the incidents I described earlier were the only times I'd said anything to them that wasn't purely social. So they're going to knowingly screw up my health after I've been nothing but nice to them?

Yeah. I don't play that. Perfectly willing to work with clueless, ignorant, entitled people; not willing to work with nasty entitled backstabbers. I also don't trust my well-being to them. So I did report them, and they've been warned by the Resident Assistant, and I submitted a statement about the pot-smoking so it's on record if it happens again. But that's not the good part.

My first class was canceled today, so I was in my room getting ready long after I normally would've left. I think the universe wanted me to hear the cell phone conversation about to occur in my bathroom...

So Ms. Thing was on the phone whining to her buddy, who had apparently gotten her an illicit handicapped parking permit to use so the poor little baby wouldn't have to park and walk like the rest of the TAB proletariat. How am I not surprised...
Apparently, the aforementioned Ms. Thing had gotten several tickets for parking with no permit at all before her friend helped her out.
So a day or two ago the university police ran the permit and, as it obviously didn't belong to her, towed her car.

She had to pay a $400 impound and towing fee and go to court to pay a $250 ticket (for what is, incidentally, a misdemeanor). Daddy wouldn't pay for it, so she had to use her own money; and she still doesn't have her car back.
I had to turn on some music and go into the back of my room so she wouldn't hear me cracking up.

Karma's a bitch, innit?

Image: A white sign on a cement block wall, with the accessibility symbol wheelchair dude. It reads: "If it's hard to grasp why disabled people need this space, WE SUGGEST: go and break your fucking spine.

No Representation Without Representation!

2009-09-27T20:03:00.007-04:00

Check out this latest bit of fucknuttery from Autism Speaks. (Transcript here.)

Even if every word that Autism Speaks had put in that video were absolute truth (and while I have major issues with the content, I don't doubt that *some* of it rings true for *some* people), I could never support an organization that purports to speak for a particular group of people without any actual leadership input from members of that group.

How would it be...
...if NARAL and NOW were run entirely by men?
...if the NAACP were run entirely by white people?
...if the National Federation for the Blind were run entirely by sighted people?

Autism Speaks is run entirely by neurotypical people. This, as much as anything, is a disability activist's quarrel with the organization. I am neurotypical, but I have my own disability - from experience, I tell you that as people with disabilities:
We are sick and tired of having people presume to speak for us.
We have our own voices.
We know our own needs better than someone without them ever could.

If Autism Speaks is a group that only represents parents, it should change its name and language use to reflect that. 'Parents of Autism Speak', or some such. It would still be full of medicalized, over-generalized speech, but at least it would be a more honest representation.

My ten-year-old little brother is on the autism spectrum, and I would never want him to see this. I would never want him to see himself as less than human or as possessed by an evil, home-destroying malignancy. I would never want him to be treated like those things are true by ignorant people who don't bother to educate themselves beyond PSAs like this.

I understand that some people feel that the 'I Am Autism' video reflects some of their own life experiences and those of some others; but please, if this is you- do other families and individuals the courtesy of acknowledging that to extend these statements to all families of autistic children, and to all people who are autistic themselves, (as this video explicitly does) is a grave offense.

Check the link round-up here to see how people are responding to this video.

Click over and join the facebook group Protesting Autism Speaks "I Am Autism" Video.

[Adapted from a comment I made on the facebook group's discussion board.]
[Edited to add content: 11:56 p.m., 9/27/09]

A Small Moment In Activism

2009-09-26T11:41:00.000-04:00

It's always been easy for me to step up and be an activist in the big moments. I've always been ready with a protest sign, with a debate, with a speech. I'm learning now how to live activism; to use the small moments, the times when it would be easy to shrug and say, "Oh, well."

So:
Tonight, I went to a forum on the healthcare reform at my church after mass.

Dinner was provided; thankfully, since the cafeteria is closed by the time I get back. Each table was supposed to have a short discussion on our concerns about the reform and write a question or two on cards. These questions would be asked of the panel, which included Dr. Goldstein, the head of the cardiology department at Henry Ford; Sister Mary Ellen Howard, who runs the free Cabrini Clinic in Detroit; and a gentleman whose name I can't recall, but who had legal and experiential expertise in healthcare, and who works for a Catholic organization.

One of our questions (well, mine, really) was about people with disabilities: basically, that it seems like we're being ignored in reference to the reform; and if there is a consideration of disability-related heathcare needs, what form it's taking. The guy who took the questions (also the MC) sat down next to me to sort them/remove duplicates. I saw him take my question and
deliberately put it on the bottom of the stack. Twice.

Way to silence an effectively silenced population, buddy.

So instead, when the conversation worked it's way around to a vaguely related topic, I stood up and asked my question anyway. And looked him straight in the eye, too.

I will not be marginalized, thank you very much.

Stabbity Death! 4: How To Respond To Ableist Idiocy

2009-09-19T17:26:00.016-04:00

Have you always thought that "Having a disabled person in your life can be a challenge,"? Do you have a strong urge to "...help a blind person live with his or her handicap,"?
No?
Congratulations, you're not an ableist asshole!
Unlike this eHow "Contributing Writer" who wrote us this ~~condescending~~ handy guide: "How to Care for a Blind Person". Go over and read it. I'll wait.

And so, Mr./Ms./You Contributing Writer, your article has brought Stabbity Death! upon itself.

All too frequently I have seen the result of this sort of clusterfucktastic "advice" enacted in daily life. But rarely have I seen it so clearly codified and presented as The Way Things Are, capital letters a must.
So here, for your reading convenience, is the comment I made on the eHow page, in the proper order and not broken up. (You'd think they'd mention a pesky little thing like character limits for comments, but no.)

Some of these tips could fit in an article called "How To Be Polite In Someone Else's Home". Putting things back where you got them is common courtesy. Do we really need a heaping helping of condescension with that? Um, let's see... no.

Others of these "tips" are only appropriate for an infant or severely developmentally disabled person. Seriously, "Keep all sharp objects like knives or scissors out of reach,"?! My best friend cooks all the time. Am I supposed to hide her knives so she isn't a danger to... vegetables? I suppose if you have a habit of leaving knives in new and exciting places in SOMEONE ELSE'S HOME, you might want to follow this advice, but that's for you - not the blind person.

I am absolutely disgusted by this article. It seems to be meant for an aide who has been hired by a blind person to help out with reading print or housework or what have you. I tell you, any "caretaker" who came to work for my V.I. friends with this attitude would be leaving right quick with a boot firmly planted in his/her rear.

As someone with a disability myself, I resent the implication that what any of us need is some saintly able-bodied person to use their fairy god-powers to help us "live with [our] handicap[s]." How about this?-

Real advice on "How to Care for a Blind/Disabled Person":

-If we hire you to provide a service, perform your job tasks professionally as you would for any other employer.

-Treat us like adult human beings, which we are. After all we do, directly or indirectly, pay your paycheck.

And now, to make everything a bit better, I present "Blind Kitteh Reads Braille" - courtesy of LOLcats.
Description: Pretty grey and white kitty sits up on his human's lap with his eyes closed and both paws on the book on the table in front of him. Caption reads as picture title above.

Edit: If you're feeling especially adventurous, head over to the article and flag it for offensive comment. I wrote a few sentences about how it presents blind people as "challenges" who need to have knives put out of their reach; how demeaning, infantilizing, and insulting this is to all people with disabilities; how we deal with this sort of thinking often enough on a daily basis without a resource like eHow encouraging it; and how I hope someone at eHow has the god-given sense to take this down. Give it a shot. I'm not sure if you'll need to create an account or not, but if you do it's a very short process.

Meta: Sorry, Y'All.

2009-09-12T20:16:00.003-04:00

To anyone who actually reads this, I apologize for the lack of bloggitude. I was out of town pretty much the whole month of August, and without my trusty laptop. Then school ensued, with move-in, a strike, and the start of class- just since the beginning of the month .
I'll try to get a post or two up this weekend; I've got a couple good ideas, including one about our very own OU faculty not-really-a-strike-please-call-it-a-job-action and one about time management (which I promise will be more interesting then it sounds).
Attack of the Activist is back!

Blogger on Wheels - Update

2009-08-04T21:50:00.004-04:00

So I did have my doctor's appointment last Tuesday. As I expected, my doctor was understanding and willing to write me the prescription. She had me call my insurance company first, to ascertain whether they have specific diagnosis requirements that must be met before they'll cover your powered mobility device.
Unfortunately, my insurance plan does not cover scooters.

It does, however, cover power wheelchairs. It seems this is quite common, even though most scooters are cheaper than most powerchairs. Go figure.
So I'm getting a powerchair. Probably this one or this one, given that I have to be able to put it in the trunk of a car. They're also two of the cheapest, which should make the insurance company happy(ish). So far I like the first one (the At'm) better, since it's faster and lighter, though the Pride chair looks a bit more durable. *shrug* We shall see. Whichever vendor I get it from will help me choose one that fits my needs.
I was on the phone for about half an hour earlier with two different people at the insurance company, who were confused as to what I was actually asking. Eventually they told me that there are no explicit requirements, but they have people who review each case for justification as it comes in.
Basically, I have to call my doc tomorrow, have her write the scrip and fax it to a vendor, and await a reply from the Case Management people at the insurance company. There's also some sort of notification involved that I could take care of, but in fact the vendor will take care of for me. (It took me a while to get the information I actually needed from the phone reps, through no fault of their own.)
I'm feeling proud of myself for actually managing to ask for help and to get this done. I hope everything goes as smoothly for the rest of the transaction. *crosses fingers*

In Which Debbie Downer Rants About Misogyny In Teh Music

2009-07-31T18:41:00.012-04:00

No. No way. This can't actually be... they didn't- seriously, what is this?
"Community Property" by Steel Panther

Full lyrics here.

I first heard this song on my local radio station, where it made the "Hitlist" of most requested songs for several weeks in a row. My initial reaction proceeded rather quickly from, "They...they can't be serious," to, "What the hell?!”
Enter Debbie Downer, my alter ego; bane of problematic entertainment and champion of analytical thought. She's all over this one.

============================================

According to the Wikipedia entry on Steel Panther, they are a 'parody glam metal band'. Ah, of course- I get it now. Obviously, they are creative geniuses exposing objectifying tendencies in the genre by creating... ~~more misogynistic garbage~~ insightful parodies. Let’s take a look, shall we, at exactly what Steel Panther is espousing.

Selected sections:

'Cause my heart belongs to you
My love is pure and true
My heart belongs to you
But my cock is community property

Whoa, back that train up – you love her so much that you want to bring her home some brand new shiny venereal diseases? So much that you can’t keep it in your pants for a few days? Going for the funny, but fail fail fail.

You're the only girl I like to screw
When I'm not on the road
When I come home dinner's made
And the front lawn is mowed

Oh, look – he gets a house servant in return for his STDs and short attention span. Someone’s got a good scam running here, and I'll give you a hint: it's not the one with lady parts.

I kiss your mouth
Even after you swallow my love

Okay, personal opinion here: if you expect someone to taste your secretions, you damn well better be willing to do the same. Just sayin’.

I wanna make it clear
For you to taint it
My dick's a free spirit
And you can't restrain it
No, you just can't chain it down

Okay, this made me sporfle. Personally, I see no reason it can’t be restrained. I’m sure someone in the BDSM community could offer some more specific recommendations. More to the point though, way to avoid taking personal responsibility for your sexual behavior, Mr. Steel Panther dude. “It wasn’t me, it was my dick!” As if there were some sort of unstoppable penile force dragging the rest of his protesting body straight to some stranger’s vagina.

But my dong is community property
Yeah, yeah, yeah

It seems to me that this man suffers from a rare condition that causes his junk to detach from his body and scamper off (entirely without his involvement, of course) to get as much action as it can. Which is probably not much, seeing as it’s a disembodied penis. Yech.

And check this out, from a band member's blog featured on the band's home page:

Right now I am thinking about all of the Steel Panther fans in the world and how bitchin they are. They don't give a fuck if their bosses walk in on them while they're playing Asian Hooker at work or if their wives hear them cranking eatin ain't cheatin. The female Panther fan keeps her vagina nicely shaved or waxed and is always down to party.

Mmmm, smells like misogyny.

Because remember, ladies: assholes won’t want to have sex with us if our genitals are, God forbid, displaying evidence that we are indeed mammals. (Also, when it becomes possible/remotely advisable to shave the vagina, I'll let you know.) And we had better not expect that our husbands/partners/whatev should actually give a damn about what bothers us and act accordingly. That would be expecting entirely too much of a “Steel Panther fan”. (Oooh – a new code for “misogynist asshat”. I like that.) Also, should you not be wanting an asshole’s penis (or any penises at all), you may as well not exist. Though you may present a Steel Panther fan with a bit of a conundrum: a woman who is not concerned with keeping herself eternally ready for whichever dick happens by. Of course, anyone whose idea of great music includes songs titled “Asian Hooker” and “Eatin’ Ain’t Cheatin’”, probably isn’t the brightest toaster in the bathtub to begin with.

Not to mention their other masterwork, “Fat Girl (Thar She Blows)” – proof that douchebaggery grows exponentially. The humor of this inspiring (-me-to-vomit) piece is predicated entirely on the premise that no one would ever want to have sex with a fat woman. (Or, as they show in the video, even a somewhat fat woman.) The funny is that he’s singing about being with a “fat chick”, which of course no actual penis-bearing person would want to do. Riiiiiight. This explains why I’ve been man-less, single, celibate and lonely my whole life.
...
Oh, wait.
...
I haven’t.

So much for that theory.

I have to say that in general, I love parody. I like a good twist on the familiar. But it seems that instead of creating actual parody, Steel Panther has settled for taking the undercurrent of misogyny in rock and distilling it into one giant clusterfucked bottle of song vomit. Objectification and dehumanization of women isn't acceptable, even for LOLZ.
FUNNY: UR DOIN' IT WRONG.

A Different Kind of Activism

2009-07-27T00:17:00.015-04:00

All right- for those of you who don't know, the board of trustees at Oakland University is considering a proposed 11% tuition increase - the highest in the state, and twice the average increase. That's right. In Michigan, where the economy is lower than low; and at OU, where we advertise as being affordable. I went to the board meeting last Friday, and the vote was postponed until Weds., so I signed up to speak. This is the fourth and final draft of my speech - thank you all for your input. I gave it almost as planned, but had to cut parts on the fly due to a surprise two-minute time limit. The parts I had to skip are in { }.

====================

Good afternoon.

I am a fifth year student here at Oakland, and to me OU is more than just a place to go to classes. It is where my mother and father, aunt and uncle went to school; my grandmother was charter class. I have lived on campus for the past four years; to me, OU is home. That is why I am so concerned about this proposed tuition increase.

Last week’s presentation included a comparison: a four-year education at OU will cost a student approximately $33,000, about the same price as a 2009 Chevy Impala SS. I feel that this analogy demonstrates that the people planning this budget may be dangerously out of touch with the people it affects most: students who are trying to pay for their education. This is my car.

[Visual description: my clunker, a copper 1990 Grand Marquis, from the front]

It cost $1200. The majority of my family members are college-educated and steadily employed: not one of them has ever purchased a car that cost anywhere near $33,000. Paying for college is a great financial burden to many of us, and a necessity for all; comparing this to purchasing a nice new car minimizes the very real struggle to afford college, and overlooks the fact that an expensive car is optional -giving ourselves the ability to succeed in the future is not.

Many of us work one or two jobs just to pay for school. According to the 2007 findings of the National Survey of Student Engagement, OU students work considerably more than students at comparable institutions. 68% of our students work sixteen or more hours for pay off-campus- compared with a 40% average among our peers. It is also the case that our families can little afford to help us right now. Especially in MI, where even those who are employed are being hit hard with benefit cuts and pay cuts. They are not getting raises for cost of living; they are losing hours at work.

{Even if we are lucky enough to receive enough financial aid to cover everything but this new increase, it still imposes serious financial consequences. Say a student takes out a private loan from Citibank, which is recommended on the Financial Aid Dept.’s website: they once quoted me an interest rate of 13%. (Which is, incidentally, why I took my business elsewhere.) But again, about $1,000 a year to cover the increase, for four years – $4,000. By the time she graduates, this student will owe the bank about $5800. Making the minimum $50 per month payments, she will spend at least ten years paying it off.}

This tuition increase, should it be approved, will have a drastic effect on many students – now and in the future. The OU slogan appearing all over billboards and television is, “You can afford this,” not, “You can afford to keep paying and paying and paying for this.”

Also last week, Mr. Pawley spoke about OU’s “brand”, and how he believes it needs to be improved. He used the example of having two resumes cross his desk from two graduate engineers; one who went to U of M and one who went to Oakland. {He said that the engineer who went to U of M would immediately have the advantage. I know this is true.} I understand that a degree from Oakland does not currently have the prestige of a degree from one of the larger research universities in this state. {But Oakland is still a reputable institution. An OU degree works perfectly well to obtain jobs that require a college education; none of which I will be getting if I can't afford to pay tuition.}

I chose Oakland because of what makes us Oakland. Small class sizes, a good education, a primarily local student body, and, yes, affordable tuition. {I understand that we want to set ourselves apart from other universities, but what I think we’re missing is that we’re already set apart.}

Right now our reputation- our “brand”, if you will- rests on providing a quality education at a decent price. We have always excelled at this. Why not improve that brand? I ask you to consider- what could it do for this institution to be known as the only university in the state not to raise tuition rates this year? As the university that made the least increase? As the university where a painful double-digit increase was rejected out of hand? The university where students were asked and stepped up to make phone calls to alumni and help with the footwork of fundraising? To be known as the university where administrators held the line, and exhausted every resource before reaching into students’ pockets in these already trying times. That’s the kind of marketing you don’t have to pay for, and a way to give more students the opportunity to make OU their home.

Ladies and gentlemen of the board, thank you for your time.

====================
What do you think? And please, if you're an OU student or just a local, come out to the meeting and represent Wednesday, July 29th at 2 p.m. in the Elliott Hall auditorium.

Update: The board approved a 9% increase in tuition rather than the original 11%. So we're still screwed, just a bit less so.

**Meta: This post has been edited continuously to reflect changes in the speech without posting the darned thing over and over again.

Blogger on Wheels?

2009-07-24T01:00:00.006-04:00

So, I’ve made a decision. The life-altering kind, or at least it seems that way to me.

In my previous post on pride, I mentioned my bad habit of trying to do things the way I’d do them if I didn’t have fibro. Well, I haven’t quit doing that just yet, but I’ve come to the difficult realization that there is something major in my life that needs to change: how I get to class.

As a student, I have few higher priorities than being able to make it to class consistently and on time. Unfortunately, I no longer have the ability to make the walk from student housing to the classroom buildings. I tried at the end of last semester – my car had broken down (yet again), I couldn’t reach anyone for a ride, and I had a final exam. It was walk or fail.

So I walked. Suffice to say, it hurt. But I did it. I even made it to my exam (and did quite well). I didn’t make it back for a long time, though. I got about halfway there, then went into a dorm building and collapsed. Literally: my left leg was spasming so badly that I was physically incapable of moving. Luckily, I had friends in the building who came and hung out with me for a couple hours while I waited for the tremors to stop, one of whom eventually bought me dinner in the cafeteria and drove me back to my apartment. It was… incredibly disturbing. When you’re used to your limbs obeying your brain, anything else is rather disconcerting. I learned that my body does not want to and will not take me that far anymore.

This is a particular problem, since I’ll be back in the apartment this year and it’s looking less and less like I’m going to have a reliable car. This leads me to the most difficult question I’ve had to ask myself since I was diagnosed with fibromyalgia: “To wheel, or not to wheel?”.

I’ve decided to ask my doctor about getting an electric scooter. It isn’t an easy choice for me. I’ve argued long and hard with myself about this, and am trying hard to keep my resolve. I’ve made an appointment with my doc; I just have to keep myself from chickening out when it comes time to actually talk to her. I’m (thankfully) not at all concerned over whether she’ll help me do this (she mentioned it offhand at some point). She’s a good doctor and has a talent for actually listening to what I say about my own body.

It’s just that I hate to lose.

In my more cynical moments, this seems to me like a capitulation: knuckling under to my disability. I understand rationally that there is no shame in asking for/getting/using a mobility aid. But there is a part of the back of my mind that hateshateshates admitting that I need it. The hyper-competitive part of me views this as losing.

This competitor in me is an old friend: I firmly believe that it is a large part what kept me from being suicidal during a decade of systematic emotional/psychological abuse by my former stepfather. I wouldn’t give up, because that would mean he had won. However, now that it is in my best interest to “give in”, this old friend has caused me all kinds of trouble.

Not helping is that it would be so much easier, short-term, not to do this. I have to deal with my insurance company, and pay for the ten percent my insurance won’t cover. I will likely not even tell my grandparents about this – I don’t need the doubt and lectures and general nastiness over something already this difficult for me. Going further into the closet. Yeesh. It’ll be like putting my rainbow flags away at the end of the school year.

In order to make this decision, I’ve had to redefine the conflict for my internal competitor: it’s not me vs. fibro , it’s me vs. failing - because if I can’t get to my classes, I can’t pass them. It’s me vs. distance – I will no longer have to worry about missing out on something because I can’t walk far enough. A friend of mine wants to take me and another friend to the Henry Ford Museum and Greenfield Village, the kind of trip I worry about - that will be no problem at all with a scooter. I won’t need rest breaks to wait for the burning in my legs to subside, I won’t collapse mid-exploration and have to stop, and I won’t have to spend the next two or three days in a clumsy brainless fog.

This makes a far more substantial part of me very happy. I am so beyond sick of having to choose my brain or my body. I recently attended the National Federation of the Blind Convention in the Renaissance Center in Detroit. This involved quite a bit of walking; from the hotel to the meeting rooms to the restaurants to the riverfront. At the end of the second day, updating my facebook, I found myself making homophone mistakes. (Their/there/they’re.) Me. Making homophone mistakes. If I didn’t know I had fibro, I would think this was a sign of the Apocalypse. I have never in my life made those mistakes, not even when I was learning to spell. But using my body more than usual had sacrificed my intellect on the altar of mobility. Not a good choice for a college student, obviously. So anything that makes this body/brain choice unnecessary is simply wondrous.

I've made my decision. My appointment is Tuesday; wish me luck.

A Disability Rant, Cont'd.*

2009-07-23T23:53:00.006-04:00

There are some things that happen in this largely dis-phobic world that just get my goat. And my sheep. And the rest of my metaphorical livestock.

Part the Second: My Body, My Choice

A corollary to “Part the First: Mother/Father Knows Best”

Once again, it is the experience of my dearest friend Laura which has inspired me to rant. She recently applied (and was accepted) to the Peace Corps, which naturally involved providing them with her medical information. She received forms back from them asking for documentation from the medical professionals who had treated her for various medical issues in the past. She, not having a lovely device like this one, had no way of reading these forms to know what was on them. She wasn’t going to let her parents know either, but didn’t get a choice when her father read over her shoulder anyway. Thus discovering a past mental health condition of which her parents had no knowledge and of which she had no intent to inform them. Basically, none of their damn business, but made so by an invasion of privacy.

My friend/roommate/ex has CP. I recently read through my journal from a bit more than a year ago and was reminded of an incident in which he was very ill (103° fever) and (after being initially unable to reach his parents) my RA called the paramedics for us. They told him to seek medical attention immediately, especially as he was recovering from a recent surgery. Even he wanted to see a doctor, and after his experiences with the medical field, it takes a hell of a lot to get this man to want a doc. But his parents called back and said that they’d come and get him and see if he really needed a doctor that night (it was about one in the morning). The answer according to the man himself and medical professionals was, “Yes.” The answer according to the parents, whom he was too sick to stand up to, had he been inclined to do so: “No.” Guess whose answer was actuated? He didn’t get to a doctor until the next afternoon. Luckily, he came out of it all right, but certainly not with his agency respected in any way.

My grandma, ever hopeful that I don’t really have that, continually harangues me about alternative therapies. She’s met someone with fibro who went off Lyrica and onto another drug for fibro (even though I can find no evidence of such a thing; antidepressants are prescribed sometimes for the sleep benefits, but there is no other drug approved specifically for fibro), she’s met someone else with fibro who’s gone off meds and is treating her condition with essential oils (incidentally, WTF?!), the list goes on. She refuses to understand that my life before I went on the medication was so painful and tiring that I would rather take my chances on long-term side effects than ever go back to that place. I rarely made it to class, and usually only made it to one meal a day. (Which, incidentally, is part of why I was skinnier- another favorite topic.) I know my body, I know how it works now; I know how to ration my energy for what I need to do v. what I want to do , I know that if I overexert myself I can anticipate the diminishing of my cognitive function for a while. I choose when to take my cane, I choose when I need to rest, and I choose when to just bull through and ignore the warning signs so that I can do what I want. I may not always make the best choice for my health, but I make my own choice regardless. My body is mine, and so are my medical choices.

One thing we all have in common is fairly apparent- disability. The other is less so, to people who haven’t lived it: a constant, sometimes subtle/sometimes blatant disrespect for our decisions about our ‘selves’ in the most basic sense- what we choose to do with our bodies.

I am learning all the time new (both polite and not-so-polite) ways to tell people to back the hell off. Is it truly all that difficult to understand basic boundaries? The basic rules that apply to everyone also apply to those of us who have disabilities (y’know, being human and all):

Our choice whether or not to disclose information is our own. Respect it.

Our bodies belong to us, and you cannot possibly know them better than we do. Respect that.

Our medical decisions are our own. Respect them.

Thank you. That is all.

*This post is back up after some revision. It remains basically intact, but has been edited to compensate for my lack of ability to focus properly when writing it the first time.

Weighed in the Eyes of God - Update!

2009-07-12T13:42:00.004-04:00

I have been remiss in not posting this sooner, but I am happy to report that the scales have been removed from the bathrooms of my church. Actually, this happened within two weeks after I first voiced my concerns, so I’m especially remiss. I am glad to see them living up to the philosophy so apparent in other aspects of the church experience there.

In the interests of fairness, because of the tenor of my first post addressing only my concerns, I feel that I need to do a better job illuminating the character of this church community. When I wrote that post, I didn’t mention that the chapel has been remodeled to include a ramped altar space, so that anyone can come up and participate by lectoring, singing with the choir, etc. I didn’t mention a devotion to inclusive language that is fairly unusual in Catholic churches. (For example, we mostly say ‘God’ rather than ‘Him’ in responses and as much as possible in the music. Though some we’ve had to let be- “Praise God with your music, worship God and bless God’s name,” just gets redundant.) I didn’t mention the scandalous practice of allowing not only the nuns (women! *gasp*) to deliver homilies, but also laypeople of various stripes. I didn’t mention the celebratory mass our priest said on the occasion of my dear lesbian friends’ wedding. Incidentally, happy three-quarters-and-an-anniversary, you two.) I didn’t mention the atmosphere of welcome that is a hallmark of this particular community. But now I have.

Inclusiveness: yer doin’ it right.

A Show of Support...

2009-07-12T13:37:00.006-04:00

Warning: If you're a certain kind of pro-lifer, I suggest you skip this post and move on.

I'm definitely doing this.
Courtesy of reynardo at Musings of the Midnight Fox:

Those that know me would know that my views lean somewhat on the left. I'm also strongly pro-choice. And I'm definitely anti-intimidation and anti-bullying.

There's been a lot of press since the murder of Dr George Tiller, a provider of late-term abortions to women whose babies were horrifically deformed or would not survive past birth, or young girls who had had no idea they were pregnant. Apparently this leaves only two late-term abortion providers in the USA. Needless to say, these doctors and their clinics are constantly harassed, vandalised and certainly not respected.

The doctors and their staff have to go through abuse and intimdating phone calls and hate mail every day.

My idea: . Send them a postcard to say Thank you for giving women a choice

Their clinic addresses are openly available on the internet. It doesn't have to be a flashy card or a long screed - just "Dear Doctor X and staff, I understand you give women a choice. Thank you for doing that. Please don't let anyone stop you." You're not identifiable through a postcard, so you can certainly do it anonymously.

For those interested, the two clinics still available:

Dr Warren Hern,
1130 Alpine Ave
Boulder, CO 80304,
USA

Dr LeRoy Carhart
1002 West Mission Avenue
Bellevue, NE 68005
USA

Stabbity Death! 3: Attack of the Invisible Death Fat!

2009-07-02T15:18:00.010-04:00

I sat down in the living room the other night, desiring only to have an innocent TV-viewing experience. Alas, it was not to be.
Ah, Subway... You sadden me. I so love your tasty sandwiches, but I'm afraid your ad campaign has earned Stabbity Death!.
I wasn't able to locate the exact ad that I saw, but it was basically a remixed and updated version of this, without the soundtrack:

Description for the visually/hearing impaired.

Notice that out of all the people in that video, there is only one I would even describe as "stocky". That's right, not even the skinny folks can escape the ravages of the hamburger combo meal. No matter what your actual size, level of health, frequency of fast food purchasing, etc. Subway would have you believe that the instant a burger touches your lips, you will fall victim to teh Invisible Death Fatz!11!!!!eleventy-one!!
This kind of fat, while completely invisible, will now make you prey to all those tired old fat-people-are-funny-cos-look-they're-fat tropes; like breaking furniture and bursting out of your clothes. I shudder to think of what would happen were you to consume one of these nuclear instant-Death-Fat missiles/burgers while actually being fat. It would be the Fatocalypse!
A critical mass of obnoxiously trite and offensive humor would be reached, causing the earth to cease its rotation simultaneously with the instantaneous destruction of all pants and furniture world-wide.
Way to fail, Subway.

Holy Missed Point, Batman!

2009-06-19T20:54:00.035-04:00

This morning, I read the paper (Detroit Free Press). This is not unusual; but today I happened to read the Opinion section, which included an editorial by one Mr. Leonard Pitts Jr.
Mr. Pitts is regularly printed in the Free Press, and in general his work is liberal-leaning and fairly sensitive. This is why it was such a shock to me to see him so completely miss the point. His column today addressed David Letterman's crude joke about Sarah Palin's daughter.
You can find Mr. Pitts' editorial here, but I'll do a little summarizing anyway.
Basically, he tells us that he's had a reader (John) write in asking why, in a previous piece regarding hate speech and marginalized groups, Mr. Pitts hadn't addressed Letterman's remark.
There is almost an audible *whoosh!* here as he proceeds to completely blow by the point with this choice bit of oblivious:

In other words, John feels a column on racial and cultural hatred is incomplete because it fails to mention the "hatred" Letterman showed conservatives when he made his controversial joke about Sarah Palin's daughter. I wish John was alone, but the column produced a number of responses like his. And the blogosphere is vibrating with the same argument: Letterman's joke represents bigotry against an oppressed minority: i.e., conservatives.

Whoawhoawhoa... He really can't see any other oppressed group here? Not even a little? Really, truly?
Here's a hint: half the freaking human race.
That's right, Mr. Pitts. While there may be some fellow missing-the-point-ers out there who actually think that conservatives are the ones hurt by "jokes" like Mr. Letterman's, those of us who pay attention (especially that particular group of us) realize that this is not the case.
Let me break it down for you, Mr. Pitts: who was Letterman insulting? A woman. Slut jokes are made about whom? Women. What group of people are routinely shamed for daring to be sexual? Women. Which group of people is it who, having dared to have *gasp* the sex and *gasp* get pregnant, become fodder for "knocked-up" jokes? Men!
...
No, wait; that's women too. Damn.

Where I part company with John is on his contention that Letterman's joke belongs in a compendium that includes Jeremiah Wright complaining about "them Jews" and Tim Hardaway saying, "I hate gay people." If conservatives were ever gassed or beaten because of what they are, I must have missed it.

Hmm... this almost reminds me of this particular sort of person who is beaten, raped, and legally oppressed the world over. You know; the group that usually has those breasts and vaginas and things.
Oh yeah...women again.
And then there's this:

Let me just say that I'm a fan of Letterman's caustic humor, and I believe the rules are different for comedians, that funny covers a multitude of sins, that a good comic can get away with saying things you and I could not.But the joke was awful. The governor's daughter is a teenager and did not seek the public eye. For those reasons, the issue of her sexuality should be treated deferentially when it is broached at all.

In choosing to view this "joke" as though it is objectionable only insofar as it was directed at a minor who "did not seek the public eye", Mr. Pitts has reinforced the idea that this kind of comment is acceptable and not hateful. Any joke of this kind about a woman- regardless of her age, sexual history, appearance, etc. - is offensive and in tremendously poor taste. Sometimes the 90s say it best: "Duh!"

For proof, look no further than a man who thinks David Letterman belongs on a list of homophobes, anti-Semites and bigots "because he made a joke about Sarah Palin's daughter." It is an asinine argument, but I guess it makes sense to him. After all, he's a conservative.

You know, this paragraph has some potential here- I can fix it! Watch:

For proof, look no further than a man who thinks David Letterman belongs on a list of homophobes, anti-Semites[, misogynists] and bigots "because he made a joke about Sarah Palin's daughter." It is an ~~asinine~~ [excellent] argument, but I guess it makes sense to him. After all, he's a ~~conservative~~ [decent human being].

Isn't this version nicer? It even works to conclude my post.

**Edit: 6/21 for punctuation and formatting.

What's With Debbie Downer? Let Me Lay It Out For You...

2009-06-17T15:35:00.022-04:00

So the story goes thus:
A friend of mine posted a status on facebook that she "Now apearenetly [sic] needs to see Hangover since so many people thought it was funny".
I replied with something to the effect of "Yay for the misogynistic dude-bro eternal man-child genre. Just what we need, another film like that. Yech." (That may be an exact quote...yes, I had just been reading Tiger Beatdown.)
Another (female) friend of hers commented that "its funny as hell" and they had an exchange that can be summarized as "It's so totes hysterical, I must see it now!"- "Yes! You must!".
But the kicker for me was the friend's final comment, "whats with debbie downer [?]". One question; no clue whatsoever.
Yes, apparently that's me, "Debbie Downer", doing that inconvenient "rational thought" thing that keeps everyone else from enjoying their problematic fantasy life without having to consider the implications. Sorry 'bout that y'all.
But really, what is "with" a Debbie Downer? Why is she so down on stuff and things?
Well, being one myself, I feel entirely qualified to ask a few return questions:

What is with The Hangover? Happily, Sady of Tiger Beatdown has answered this one for me.
What is with having a genre of film that exists to glorify the infantile male a**hole while women in the feature are two-dimensional nagging and/or slutty parodies? (Also: the "undateable" woman who doesn't conform to beauty standards. Ooooh, a fat/un-madeup/un-shaved/doesn't-give-me-boners chick. Harharhar.)
What is with otherwise aware and intelligent women (and men) rewarding the makers of these films with our money?
What is with people of both genders (especially women!) who attack or shame anyone who speaks out against misogyny at work in our culture? ("Oh, you're just too PC./Can't you take a joke?/What's your problem, b*tch?")
What's with media representation of gender in general?
What's with this, or this, or this, or this (NSFW)?
What is with women not being paid as much as men for performing the same work?
What is with still not having an amendment to the U.S. Constitution that upholds the rights of women? (Other than the vote, of course.)
What is with the legal system of the "greatest nation" having a female population of whom one-in-three to one-in-five have been sexually assaulted having only piddling penalties for sexual assault and rape? Most rapists serve only 50% of their sentence- this works out to about 5.4 years.
What is with street harassment?
What is with participating in fat-shaming, slut-shaming, woman-shaming behaviors? We are so immersed in this that we do it to ourselves and other women- "God, I'm so fat./She shouldn't be wearing that./That little whore is always chatting up the guys./Eww, doesn't she shave?" How many times have we heard variations on this theme?

So, yeah: I'm a Debbie Downer sometimes. It's a transformation that occurs when my feminist/activist spidey-senses are tingling- telling me that something is bullsh*t. Quite frankly, I'd rather be a Debbie than live my life in willful ignorance; I'd rather take a stand in whatever way I can than lie down and accept that this is the only way the world can be. I don't believe that and I never will.

How Smart is the SMART Bus Anyway?

2009-06-15T20:26:00.012-04:00

I was reminded of public transportation when a friend told me about a demonstration being held tomorrow about the inaccessible design of the People Mover, a public transportation service in Detroit. It got me thinking about our area transpo, and this is the result:

Here in the tri-county area of MI (Wayne, Macomb, Oakland), we have the SMART bus service.
As far as being physically accessible, they do pretty well.
As far as being practical to use, they range between "kind of okay" and "disastrous".

Pros:

-Physically accessible: the buses are equipped with lifts and even the smaller "Connector" buses have space for a few wheelchair users to ride safely.
-Personal Care Attendants ride free: from the website, "A PCA is anyone whose purpose is to help you meet your disability related personal needs," so this person need not be an employee.
-Curb-to-curb ADA service available in some areas: they will pick you up from wherever you are and take you to where you need to be regardless of whether there is a bus stop there.
-Dial-A-Ride available in some areas
-With one or two exceptions, the staff and drivers are friendly and fairly competent.
-You will probably get where you're going. Eventually.

Cons:

-Infamous for being half an hour late or more; I have spoken to fellow SMART riders who have lost their jobs because of an inability to arrive in a timely fashion due to bus service problems
-While the website maintains that there is a ten-minute pickup window (e.g., you should be outside ten minutes before an ADA connector is due to arrive and wait ten minutes after), the reality is that buses are as often half an hour early as half an hour late and don't usually wait even long enough for someone to dash out of the house and tell them to hold their horses. This leaves you waiting outside for as long as an hour sometimes if you want to be sure of catching the bus.
-Not all cities voted to have SMART bus service. So if your doctor is in Rochester and you need a bus ride from Royal Oak, you have to take a bus to the border of Rochester and a participating city (say, Auburn Hills), cross the street yourself, and catch a ride with the Rochester municipal paratransit. (Which requires separate registration.)
-Even within a city, ADA service is not always offered throughout, making transfers necessary, which costs more and is not always feasible.
-ADA Connector fare is twice that of a comparable fixed rate route. So a one way trip costs $1.50 on a fixed route bus, but $3.00 on the ADA Connector.
-There are unclear rules and uneven adherence to them on the part of the drivers. Some will make sure your wheelchair/assistive device device is strapped down, some won't unless you ask. Apparently there is also a rule that requires a wheelchair user to remain in their chair for the duration of the ride, but this rule has only been enforced by one driver that I've heard of: the driver in question threatened to refuse service if my friend were to transfer into an actual bus seat. I'm pretty sure he filed a complaint with them, but I don't know if the policy still holds.
-Some of the transfer areas (if you need more than one bus to reach your destination) are a bit shady. A friend of mine who has a visual impairment won't take the bus from her area of Wayne to Oakland because one of the transfer areas they leave you off at (for an indeterminate period of time) is an abandoned Meijer's parking lot in a low-traffic area and she doesn't feel safe.

Basically, SMART is a good idea with a whole lot of kinks in the execution. They have the bare bones of a decent transportation service, but need to work on developing it- especially as it pertains to customers with disabilities and the ADA service.

STUD**, our student-run disability group at Oakland U., has been trying to work with SMART, the university administration, and even the city of Rochester in order to get one of the above to put in a bus shelter. The bus stop is located on the side of the traffic circle at the main entrance to campus. There is no signage, and the closest buildings are hundreds of yards away. There isn't even a bench. So not only very *fun* in the winter, but also impossible to locate if you don't know it's there. It can also be difficult to find for someone who has a visual impairment; there are no nearby landmarks, just an open paved area and the traffic going by. I've seen driving past campus that the whole main entrance is torn up and being redone: I really hope that our Disability Support director has managed to convince them to at least put up a marker or bench, if not an actual shelter. I'll have to ask next time we speak.

The importance of reliable public transportation cannot be stressed enough, especially for PWDs. For people who cannot drive (for whatever reason) using the bus system may be the only way to seek out and keep employment; or more basically to get out of the house and into the community to shop, socialize, attend classes, participate in religious services, or do whatever basic human interaction/social function that TABs* take as a given.

*TAB = Temporarily Able-Bodied; everyone who is alive now and will likely survive to become disabled in some way.
**STUD = Students Toward Understanding Disabilities; because, hey, who doesn't want to be a STUD?

A Pride Post!

2009-06-07T23:44:00.004-04:00

In honor of Motor City Pride, a transplant from a facebook forum:

A high school boy named Kenny wrote this-

There are two things that I have noticed for as long as I have been gay. I know I'm only a senior in high school, so it's only been a few years, but I still believe I have the proper credentials to be stating these things.

1) Homosexuals consistently complain about the stereotypes that the heterosexual world places on them.
2) Homosexuals continuously fulfill those very same stereotypes!

It is beyond me why anyone would complain about how they are treated so unfairly by the government, and then attend a huge "gay pride" parade where homosexual men dress up as women in provocative outfits. People in the outside world look at homosexuals as promiscuous, slutty, uninformed and just stupid. I'm sorry, but the activity that takes place at these very same "gay pride" parades does nothing but reinforce these notions.

A stereotype about gay men that we often get mad about is that we are all slutty and we all just want to have sex all of the time. When I look in my MySpace inbox and there's a new message every day to the effect of "wanna hook up?" or "UR CUTE, LETS HAVE SEXXXX!" or something of that sort, I cringe. It makes me want to puke. I have been in four relationships in my life, only one of which was serious. The other three ended when I told the guy I wouldn't have sex with him. Awesome job, homosexuals.

Another large stereotype about gay people is that they are unwilling to work for things and that they are just plain indolent. I have a number of gay friends, and out of the twenty or so of them, I only know of me and two others that are going to be going to college in the fall. I know of nine 20 something year old gay men who are working at McDonalds (6), Burger King (2) and Taco Bell (1) and that is all of the life's ambition that they have.

While stereotypes are a very negative thing, it seems to me that often times, gay people just fall right in to these stereotypes. They feel as if the world doesn't expect them to do anything more, so they simply don't. I challenge all of you to make something out of your lives and to reach above what people expect of you. I've been told a lot of negative things about my life that referred to my sexuality, but the worst thing anyone can ever say to me is that I'm not capable of doing something. Prove people wrong. Expect more from yourself.

I responded-

@ Kenny
I understand the frustration here, but I have to disagree with some of your main points.
Let's start with:
"1) Homosexuals consistently complain about the stereotypes that the heterosexual world places on them."
Of course. No one likes to be pigeon-holed into a set of behavioral categories that does not apply to them personally. However, regarding number two-

"2) Homosexuals continuously fulfill those very same stereotypes!"
Of course! In any group that has associated stereotypes (and they all do), there will be individuals whose behavior seems to conform to them. This conveniently (for the stereotyper) allows for the ignoring of both non-conforming individuals and conforming individuals who do not actually belong to that group. And even people whose behavior fits the stereotypes in some instances get frustrated with them, because no individual fits every bit of a stereotype all the time.

The question becomes whether or not it is acceptable to conform to the stereotypes in question. And in my opinion, that is an unequivocable "yes".
You brought up the issue of how GLBTetc people behave at Pride events and implied that in your opinion it hurts our causes.
I say in response that it is impossible to honestly advocate for freedom and human rights if you seek to quash freedom of expression in your own movement. We are not (or should not) be seeking legal rights on the basis of our "good", "socially acceptable" behavior. We are seeking recognition of our basic rights as human beings.
Human rights are not a "treat" for being good little conformists.

A last point:
"Another large stereotype about gay people is that they are unwilling to work for things and that they are just plain indolent."
You are absolutely right that it lies with each and every one of us to make our life what we want it to be and not what others expect from us.
What gets me, though, is that this stereotype and your example about your friends make it seem like this phenomena of under-achievement is happening in a vacuum. Just one other factor is that many gay and LBTetc young folk are without support (financial, emotional, physical...) and have been since they came out. Going to college and/or entering a fulfilling career path have always been, and are still, life tasks that are accomplished most easily and most often by people who have family support. Heck, you can't get financial aid for college unless your parents help you with the paperwork or agree to disown you. (As someone under 24/ unmarried/non-military/un-orphaned/childless.) If you look at outside forces as well as internal ones, it is no surprise that GLBTetc people so often "fall" into this particular stereotype.

We all get frustrated when we see and hear these stereotypes being put about endlessly. Whether or not they apply to us, it can be painful to know that they are all that is expected from us. It is up to each individual how and how much to be authentic in their behavior, and up to the rest of us to respect that series of choices.

It is marvelous to go to Pride each year and see all the people just being the way they want to be. Let's keep it up.

Weighed in the Eyes of God

2009-05-31T19:02:00.006-04:00

I found myself somewhat taken aback yesterday upon using the restroom after church. I was surprised enough that I stopped and stared for a bit, and upon exiting had a friend check to see if the situation was the same in the men’s room. Apparently, there are now scales in each restroom in the church building.

I went and spoke to a pastoral associate, who was attentive and promised to pass my concerns on to the nurse. I explained my thoughts, and suggested that the scales could be made available in an alternate location, noted on the bulletin board. She told me the scales had been donated by a local hospital to encourage health (!), and to have them available for those who may not have one at home. I understand that to a degree (though of course weight is not a reliable indicator of health), but the location of said scales leaves a funny taste in my mouth.

I guess I was the first to bring up the possible effects on people who have/are recovering from eating disorders, and indeed anyone who has grown up in this fat-shaming culture. When you go to church (if that’s your choice), you are supposed to be in a safe space. We go to worship and to be with our community, not to be encouraged to judge ourselves (however indirectly). Weight is just a number on a scale, but for so many it can be a shameful/painful kick in the self-esteem. It seems to me that there is an added negative element to being encouraged to weigh yourself in a place that advocates welcoming acceptance.

I’m waiting to see what happens.

* Update!- as of 7/12/09, there is an update on this here.

Credit Where It's Due: Without A Trace

2009-05-31T18:56:00.004-04:00

Just when I was ready to give up on television, Without A Trace has given me hope that someday there will be realistic and nuanced portrayals of PWDs in the media. I caught the rerun of the Season 7 episode “Rewind” the other night. Without A Trace focuses on a missing persons investigative unit in the FBI.

In this episode a paraplegic man named Chris disappears. He is in the middle of a lawsuit against the trucking company from the accident which caused his disability, and is part of a homegrown To Catch A Predator operation. A detailed synopsis can be found here, but I’m going to keep this short.

Basically, Chris was a human being coping with a life-changing event- not a disability-overcoming hero or pitiable object. Throughout the episode he is shown adapting, indulging in self-deception, making amends, feeling helpless, empowering himself, defending his life, working and living. Just as much as any other character, he is a believable person.

Both Without A Trace and Criminal Minds are CBS shows- and I know what type of content I’d like to see more of.

Criminal Repesentation: "Criminal Minds" and Disability

2009-05-25T21:03:00.016-04:00

I watch a fair bit of television, so I'm used to the invisibility of PWDs in the medium. I'm also used to the few representations being inaccurate, stereotypical, and/or insulting. I was not, however, prepared for this.

The television show Criminal Minds is built around a unit of profilers at the FBI who use their knowledge of criminology to track down serial killer “unsubs” before they can kill again. Last week’s presentation of the show featured the two-part season finale: “To Hell and Back”. A short summary follows:

The villains of the piece are two brothers in Canada, Lucas and Mason; one developmentally disabled and one physically disabled (quadriplegic). Mason is a medical doctor, and the brothers live on their family farm. It is eventually revealed that Lucas, the developmentally disabled brother, had pushed his brother Mason off the roof of their barn- causing Mason’s quadriplegia. Lucas became Mason’s caregiver after that, and was completely under Mason’s thumb: to the point where, at Mason’s direction, he kidnapped at least a hundred Detroit vagrants and performed crude stem cell experiments on them. He then killed them and fed them to the pigs.

When we first see Mason, he is lying in bed- dirty and alone. Having just been burst-in upon by the FBI in his Canadian home, Mason attempts to call the police via his computer-connected headset. Agent Rossi rips it off his head after Mason won’t believe his assurances that they are there in conjunction with local authorities. The most disturbing moment (disability-wise) in the whole episode also involves Rossi - more on this later.

Meanwhile, Lucas is in hiding with Kelly, the girl he kidnapped. Lucas is completely adrift without direction from Mason, and Kelly manages to talk him into “being friends”- getting her food and letting her outside to urinate. He becomes enraged though, when he realizes that she tricked him by taking his cell to use in the bushes when he lets her out. Shortly thereafter, Lucas is shot to death when he has an emotional outburst and lunges at the cops. Mason soon joins his brother, shot by the brother of one of his victims.

Problem One: How utterly hackneyed and insulting is the old cliché of using people with disabilities to portray the “other”: the villain, the outsider, the freak. Do please let’s move on, screenwriters. PWDs are so rarely portrayed in television, so when this kind of representation is put forward there are few or no counterexamples; unlike the able-bodied serial killer, who is balanced by able-bodied good guys and able-bodied innocent bystanders.

Problem Two: The “cure” mentality. Mason was driven insane(r?) when he became disabled, searching so desperately for a cure that he was willing to kill people in experiments that had absolutely no chance of working. There is an assumption made that his life became no longer worth living when he became disabled; it’s clear that we are supposed to empathize with his motives while deploring his methods. Yech. Disability is not the end of life, and (whaddya know?) PWDs are just as likely to enjoy life as anyone else.

Problem Three: The flagrant and disgusting abuse of physical power by (able-bodied) Agent Rossi over (disabled) Mason. What possible excuse is there for depriving Mason of his ability to verify the legality of the FBI’s presence via an emergency call? Far easier to just take away his means of communication, because there’s nothing he could do to prevent it. Even more vomit-inducing is when Rossi is interrogating Mason one-on-one. He questions Mason but doesn’t get the answers he wants, so he reaches out and puts his hand on Mason's trach tube as though to tear it out. Would a moment like this ever be written if Rossi were questioning an AB person? No, of course not; it would be horrible and villainous behavior should he threaten to crush someone’s throat with his hand on their windpipe. But he can still be the hero if he’s only threatening the bodily integrity/bodily autonomy/human rights/self-ownership of a disabled person. What in the flaming frell is this crap?! This kind of behavior makes me sick, especially having seen echoes of it in real-life events I’ve witnessed and been told of by friends. Because when you’re disabled it gives a free license to the rest of the world to touch you, touch your equipment/belongings, get in your personal space, physically move you somewhere you don’t want to go, help you whether you want it or not, etc., etc.

Problem Four: The portrayal of Lucas as a sort of eternal innocent; a blank slate that exists only to be written on by others. It’s a stereotypical, painfully two-dimensional representation of people who have developmental and/or cognitive disabilities. The important part of that last sentence was “people”. That’s right: people, fellow human beings, adults, persons with emotions and motivations- not some sort of metaphorical tabula rasa cardboard stand-ins. Get with the program, Hollywood.

I am incredibly disappointed in Criminal Minds.

Stabbity Death! 2: "The Feminization of America"

2009-05-23T00:47:00.000-04:00

Yes, I know that there are many things wrong with Rush Limbaugh. I know that listening to him only invites insanity. Sadly, I have no choice unless I wish to completely avoid the first floor of my home every weekday afternoon. My grandparents are great fans of Mr. Limbaugh.
I usually manage to completely ignore his ramblings, but recently a particular phrase has caught my attention repeatedly. At every opportunity, Rush goes on about "the feminization of America". This phrase has earned Stabbity Death!
What he means here is "the weak-mindedness, the stupidity, the dishonorable behavior, the wishy-washy nature that is overtaking America." He has a right to his opinion.
But guess what, Mr. Limbaugh... Women don't have a monopoly on any of these traits! I daresay that they are fairly evenly distributed without regard to gender.
If you want to say these things about the current political climate, you are of course free to do so. But say what you mean!
Using this lovely little catchphrase insults better than half of the population and just showcases your general assholery. Knock it off, Mr. Limbaugh.
Though when you tire of this phrase, I'm sure that you'll come up with something else that makes me want to take a sledgehammer to the radio. *sigh*

Visual aid: Sledgehammer with note taped to it reading "metaphor".

A Disability Rant

2009-05-21T18:41:00.009-04:00

There are some things that happen in this largely dis-phobic world that just get my goat. And my sheep. And the rest of my metaphorical livestock.

Part The First: Mother/Father Knows Best
My best friend Laura is blind. She doesn’t wear sunglasses. Her choice was made for comfort and as a conscious decision not to conform to a common stereotype. She has shared her reasoning and her commitment to this decision with her mother. She made this decision years ago, but somehow the subject manages to come up with distressing frequency. Her mother would prefer that Laura wear sunglasses so that people would be more comfortable interacting with her and looking her in the eye. Because Laura’s eyes never fully developed and have scar tissue from surgeries, they don’t have the same appearance as your general eye-on-the-street. In Laura’s view, which I happen to share, if people can’t handle a view of her closed eyelids (*gasp*) it has nothing to do with her and everything to do with their ignorance: something she is under no obligation to ameliorate. Still, though, her mother persists in bringing it up every so often.
Unfortunately, as a disabled person, it isn’t necessary for the giver of unwanted parental advice to be your actual parent or even someone you’ve ever met. It could be the total stranger who comes up to you in the snow to pat you condescendingly on the head and ask where your hat is. It could be the check-out person asking your friend what you want with your soup. It could be the acquaintance who tells you to give up your disability parking permit because you “look fine” and the extra walking would be “good for you”. It could be the unseen stranger who comes up behind your wheelchair and pushes you forcefully without regard to your bodily integrity or actual direction of travel. Society sees us as eternal children, incompetents: in the perception of many, we will never be allowed to grow up.

If we’re not seen as whole people, possessed of our own agency and owners of our own bodies, is it any surprise that people with disabilities are often edged out of important life functions? Sexuality, employment, simple everyday transactions: these are often made absurdly difficult by the ignorance inherent in the status quo. So we continue with our snappy comebacks, pointed glares, and gentle attempts at education...

Frances Kissling Made My Day

2009-05-15T17:14:00.004-04:00

Just sayin'...

Stabbity Death! 1: Why I Hate Straight Pr0n

2009-05-13T20:25:00.013-04:00

Fear not, gentle reader- this is not an anti-pornography rant. I like sex, I like sexuality, and I appreciate a well-executed dirrty film.
So why does your average straight porn earn Stabbity Death? It's all a matter of perspective. Namely, the perspective that is lacking: women’s!
The common scene goes thusly: completely random excuse to start going at it, nakedness, woman’s face/body, man’s body, genitalia, genitalia, woman’s face, genitals, genitals, woman’s face etc. Ok, we get it, he’s seeing her face. But, um, there are two people having sex here, right?
Has the man in question been suddenly decapitated while his lower body soldiers on? Do all male porn actors have tragic cases of lack-of-face-itis? In reviewing videos recently uploaded to RedTube (Purely for research purposes, I assure you. Ahem.), I have confirmed my initial suspicions; after the establishing shots are filmed, 90% of male porn actors are replaced by… SHARKMEN!!! EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!

(Artist's Rendering)

Explains a lot, doesn’t it?
I, for one, speaking as someone who likes both the mens and the womens, (while being sensitive to the massive sharkman layoffs that could result due to sharkist prejudice) would like to see more balance between the screen time given to men’s and women’s faces. After all, the woman always seems to be having a Great! Time!, but what about the sharkmen? Don't they deserve Great! Times! too?

Edit:"Stabbity Death" is meant as a uni-dimensional quick hit of snark, and should by no means be taken to imply that the highlighted problem is the only problem associated with any given subject.

Pride: A Fibro Story

2009-05-13T15:00:00.012-04:00

If I am guilty of one of the seven deadly sins, it has to be pride. This is the kind of pride that suffers in silence; that doesn't allow me to admit weakness. It has caused problems in the past, but has become particularly troublesome as I come to terms with my disability: fibromyalgia.

I don't "look" disabled, and generally pass for able-bodied. The only outward signals of my condition are an occasional slowness of movement or speech and sometimes a stiff/hyper-corrected posture.

I have a terrible habit of completely draining my physical and psychological resources in order to do the things I want to do in exactly the way I'd do them if I didn't have fibro. My grandparents, the family I live with, very much encourage this. My family doesn't know what to think about my disability. My grandmother in particular doesn't even believe that I have fibro, and the rest simply ignore it.

One representative example: my father had agreed to change my tire for me but instead changed his mind and told me to do it myself. I am perfectly capable of changing a tire myself, which is what I eventually did. The problem was trying to explain to him that the energy I have to expend to get rusty old bolts off and on/manhandle tires is about half my energy for an entire day. He stared like I was speaking a foreign language, and said that I needed to practice and that manual labor would probably do me good. Thanks, Dad; the hand spasms and back pain were totally worth it. I also baked cookies that day, cleaned the kitchen three times, and collapsed in an exhausted heap five hours before my usual bedtime.

The moral of the story is that even when I can get past my stubborn pride and ask for help, I can’t often expect it. It gets more difficult to ask every time. Shame + pride = a harmful reluctance to bring up my disability at all.

Recently, I went on a date with a gentleman whose disability (MD) is very visible; he uses a power chair. We went to an art museum, a venue that requires quite a bit of walking/standing. By the time we left the exhibit, I was exhausted and in pain, but I never said a word; I didn't want to let my disability get in the way of an otherwise lovely time, so I chose to ignore it. We had dinner at his place, and then went for a walk around the subdivision- also not a good idea. I was visibly limping by the time we got back, but I still didn't say much. I paid for that day by spending the next two with exhaustion, pain, loss of cognitive ability, and muscle spasms. Don’t get me wrong; I had a wonderful time. He’s excellent company, and my fibro was unceremoniously shoved into the back corner of my mind while I enjoyed the date. Which is another aspect of the problem, I think: being too proud to listen to my body when it tells me to stop, take a break, sit down. You'd think it would be easier to broach the subject with someone who is already intimately familiar with the need for accommodation, but my pride still held me back.

I’m struggling to learn a way to release my painfully tight grip on pride and stubborn (unnecessary) self-reliance. Being home from university makes it so much more difficult to find a safe space where I can just be myself- complete with limitations. It’s hard to accept the fact that, like every other sapient being on this planet, I am limited. Maybe this is where pride and I have gotten the wrong start, because pride isn’t such a terrible thing in and of itself; I want to be proud of who I am, proud of what I can do, proud to be human and have things I can’t do. I want to stop being prideful; it only hurts me and disconnects me from others.

I leave you with a song. (Feel free to ignore or enjoy the oceanic video that comes with it.)

On weight...

2009-05-09T22:16:00.017-04:00

I have a cousin who's graduating from high school this year; let's call her "A.". She's a gorgeous brunette with a powerhouse singing voice and mad acting skills. I recently attended a performance of hers, and on the way out I picked up a copy of her school newspaper. (Of which she is an editor. Did I mention talented?) I saw that A. wrote an editorial piece, "Dietribe", chronicling her struggles with her weight/weight loss.

"Fat. Overweight. Ugly. The size of Texas.
These are just a few of the words I've used to describe myself in the past. In my eyes, I've never been the media's depiction of what's pretty."

It broke my heart to learn that she started Weight Watchers in the fourth grade. She recounts how she tried her very hardest, many times, to stick to diets, but always finds that she will "slide back to her old habits".

"Since fourth grade I've been on more diets than I can count. I've lost, gained, and gained some more. I've had some great success, but I always seem to lose it just when I'm doing well. It drives my family crazy. It's hard for them to watch me achieve success and then ruin it over a Jimmy John's binge."

"...it went from eating correctly on the diet program, to not eating, to bingeing and ending the diet.
That's why I hate diets.
I don't know what it is about them. Maybe I'm lazy. Maybe I'm afraid of success.
Despite the support I'm receiving, I'm just going along for the ride. I'm not ready to make that shift. I wasn't ready at 10, and I'm still not ready at 18.
I just hope that when I am ready, it's not too late."

I want to wrap this girl in hugs and send her to Kate Harding express-mail. There are so many hurts here.
First, how dare anyone tell my beautiful, talented cousin that she is less in any way? Growing up, I always saw A. as the lucky one, the talented one, the pretty one. It saddens me to think that she doesn't see that amazing young woman when she looks in the mirror.
I love my aunt, but I wish that she could have seen past her own body insecurities for A.'s sake. Aunt D. is one of the lucky 5% of people who have lost weight and kept it off long-term, and assumes that (with sufficient effort/the right plan) everyone else can do it too. No wonder A. feels like she's driving her family crazy. Even though she has PCOS,which has weight gain as a symptom. Even though she's otherwise healthy. Even though she has fifty-two other talents and achievements that her family can be proud of.
Once I get past personal outrage there's, well, more outrage.
How dare anyone tell a ten-year-old girl that she's too heavy?! At that age, the body hasn't even started puberty. It's perfectly common for a preteen child to carry extra weight, because their body is preparing to develop! Gee, who'da thunk it? And my opinion of Weight Watchers is further lowered. There is no way that a perfectly healthy child should be encouraged or allowed to participate in a weight-loss program.
Also, the information that A. (and pretty much everyone you've likely met) has had access to: pro-diet, anti-fat, pro-deprivation...In contrast to the information she hasn't been exposed to: like that weight-cycling is a real health risk or that it's just as difficult to make naturally fat people skinny as it is to make naturally skinny people fat. More basically, diets don't work long-term for 66-95% of people who try them (depends on which study you look at; in any case, a majority).

Despite all the messages from family and society, A. seems to know what it is that she really needs:

"...I will still need help and support, but not in the ways that I've had it. What I don't want is a look suggesting that I should not eat the tater [tot] pyramid. What I need is a gentle reminder that I'm beautiful regardless of what's on the lunch tray in front of me.
Fabulous. Beautiful. Gorgeous. Lovely. These are the words I want to use."

A., darling, you can use those words without ever losing a pound. You can use those words if you gain fifty. You have the awesome courage that allowed you to write this article in a high school publication. I hope that eventually you can use that same courage to accept yourself exactly as you are. Maybe I'll go send you that link to Shapely Prose now, and Junkfood Science too. Come join me; it's happier out here, I promise.

An Introduction of Sorts

2009-05-09T21:43:00.003-04:00

Welcome to a blog.
My first attempt at blogging, this has been inspired by my fellow internet activists. I can only aspire to their level of eloquence, perspicacity, and sheer wonderful-ness; but I will try my humble best.
An undergraduate student at Oakland University (MI), I am proud to be female, bisexual, disabled, and a complete dork.
For this blog, I intend to respond to and/or analyze various articles, statements, media artifacts, occurrences, and anything else that inspires me. I warn you in advance that I am prone to intellectual ranting, sarcasm, and relentless logic.
Enjoy!