…. but wait, you say! That’s not a cat! No, it’s not, but it’s cat-related!

I’m growing cat grass. I’m trying it with plain ol’ wheat grass seed in a packet, and growing from one of those kits at the same time — this one has wheat, oat and barley seed. This is my first time actually potting plants with my own soil, germinating the seeds etc. Yeah, it’s not much but it still has me excited. This is the two pots (kit seed, packet seed) on our window sill.

Now for some actual cats! Mitsy gets comfortable in some awkward positions.

Buddy, on the other hand, is lying belly-up as usual.

Would that I could borrow some of his bliss.

(Cross-posted at Feministe.)

***

Before we go any further, you guys are going to need a quick tutorial on models of disability.

There are a number of models, but the two primary models are the medical model and the social model. These are the two most often discussed because of the particular ways they conflict with one another.

The medical model centers around the individual. The medical model defines disability in opposition to the normal body/brain, as deviating from that model of normalcy, and any problems that arise in your life are seen as arising from your deviation. Thus, these problems are to be solved by addressing that deviation — by bringing your body/brain closer to the normal model.

The social model centers around the structure of society. The social model does not seek to define disability: instead, it proposes that the problem is that society is built such that many people are prohibited from full participation in society because of their differences. Under the social model, the problem is not the difference, the problem is that society does not accommodate that difference. “The problem is not the person” is a common refrain from champions of the social model.

In short, you might say: The cause of exclusion is not the disability. The cause of exclusion is how the rest of society treats disability. Therefore, what needs to be addressed to eliminate this exclusion is not the individual person’s condition. What needs to be addressed is how society is set up in such a way that this person faces trouble when attempting to exercise hir right to participation equal to that of a non-disabled person. What do you change? Not the person. Society.

There are many other models of disability (including the charity model, which I think deserves more focus because of the real and lasting damage it does to disabled people) listed and explained here. It is worth a read. (You can try the Wikipedia page, but it appears to be written from an abled perspective, and of course the one model they promote besides the two above is the “market” model — how quintessentially white-American-male of them. A lesson in lenses.)

***

That said, I’d like to take a moment to establish a point regarding respectful language.

When at all possible, I prefer to use the term “condition” rather than words like illness, disease, disorder — which require the assumption that something is wrong with the person. The word “condition” has a more-or-less neutral connotation, in my experience, which allows me to describe the condition (see what I did there?) of a person’s body and/or mind without loading them down with all the detritus attached to the medical model, which assumes deviance over variance.

That said, sometimes I lapse, and fall into using the more common terms — like, here, mental illness (similarly, chronic illness, invisible illness, etc). I do honestly believe that there has to be a better way to describe the same thing — [mental/chronic/invisible] health condition? — and honestly prefer that those whose brains and bodies are normative would stick to the neutral language.

But something holds me back from being too strict with myself, and others in the atypical realm, on the language issue. Sometimes, I feel like embracing the commonly-accepted language to describe my disability-pride, body-positive, radical acceptance politics might help change exactly what concepts come to mind when people use that language.

Thing is, this isn’t something that can be done in every instance. There are words which simply aren’t going to be reclaimed to a point where even non-group members can use it without calling forth all of the hate and pain associated with them. There is absolutely no acceptable use of the word “retard” or any derivative thereof.

But every once in awhile, a space seems to open up for those of more radical leanings to take hold of that language and transform it.

You see, it’s happening. Right now. With the disability movement.

Think about the word “disability.” There are so many problems to identify with using this particular word to describe a certain category of people. It uses negative language — the prefix “dis-” — to describe them, which sets the tone for all the discussion that follows. The word necessarily implies a lack of something, which is a screwy way to describe a set of people and leaves all sorts of trouble in its wake. And the assumption that people with disabilities do not have ability is kind of silly, isn’t it? Ability to do what? Maybe certain folks with disabilites cannot walk — or talk — or perform certain self-care tasks — or work for pay. But those people do have the ability to do a host of other things. Why is it only that-which-exists-in-opposition-to-abled-people which is important to identify? And why can these differences never be positive?

That’s just a start.

But here’s the thing. The disability community — not unequivically, but more or less — has embraced this word and run with it. Fuck all y’all and y’alls shitty assumptions, they say. We’re DISABLED AND PROUD!

And the disability community is holding its ground. It has created a positive identity out of the language that the scornful world shoved on us. A wide-ranging, rich and deep identity that is all its own — it’s disabled people deciding how to define their disability. Self-determination at its best. And if anybody thinks otherwise, well, fuck ‘em.

And make no mistake, disabled folks are everywhere, and the community they form as a group is strong and working hard and accomplishing incredible things.

I have no shame about calling myself disabled, or saying that I have disabilities. I used to — along with other fears and anxieties about the term — but the more I connect with this community, the less I give a shit about all these problematic ideas and attitudes that abled folk come up with. I was holding back based on a construction that was wholly centered aroudn the ideas of people who were not disabled. Why should I be giving them the biggest say when determining my own identity?

The term “mental illness” (et al.) has its problems. But I’m hoping — really hoping — that it can come to inhabit the same sort of space “disabled” does now. Maybe not. Maybe I’d be better off switching to “health condition” to try to neutralize the toxic attitudes of the rest of society.

I also hope that people with mental conditions which typically aren’t considered “severe” enough to be categorized with conditions like schizophrenia and borderline — depression and anxiety disorders, for instance — might come to realize the similarities they share based on how society treats them both — and accept a term that puts them square beside fellow marginalized folk, standing in solidarity.

These are all my own thoughts. Every person has their own ideas, and is free to identify however they feel is most fitting for who they are. There will not be a monolithic voice here. And there may well be criticisms of what I’ve written here, and I’m ready to accept those if so.

But I wanted to clarify right now, so that people understand exactly what is behind these words when I use them.

***

A quick aside: many of us with invisible disabilities, with mental illness, with health conditions that aren’t as inhibitive as we usually think when we think “disabled,” have trouble identifying ourselves as disabled — we feel like we don’t count.

I want everyone to know this: the disability community welcomes all of us warmly, if and when we come around to that identity. The disability community readily accepts these people.

You know who makes the biggest fuss about how certain people “don’t count”? — Abled people. Abled people who have no investment in the disability community. Abled people who aren’t interested in actually listening to people with disabilities to learn what they actually want from the rest of the world. Abled people who aren’t interested in actually addressing practical issues for the disabled.

These are the people who police that boundary. These are the people who try to shame you. Not disabled people. Abled people.

Don’t let them make you afraid of identifying a certain way. Own your identity. Have it for your reasons. Not theirs.

***

Another aside: I would much rather people adopt the social model than adopt people-first language, if I were forced to choose one. I appreciate people-first language and, given that we are thankfully not forced to choose one, I use it.

But sometimes I feel like abled folk take it on to the exclusion of any other action to help PWD. There are so many other things we need. Please do something real about them. Don’t just stop at changing one fucking word in your vocabulary. Thanks.

(Cross-posted at Feministe.)

MOON SHOE IT UP!

Second, here’s Billy Mays (RIP) going through the drive-through at McDonalds.

(I’ve heard that (surprise, surprise) the morning radio show people this is associated with are assholes, and I’m sure they are, given that it’s pretty much a requirement in the genre. Fortunately, they don’t appear to have part in this video — it’s all Billy.)

What’s been cheering you up this week?

(Cross-posted at Feministe.)

Around sixteen years old, when I was just beginning to realize how fucked-up my family relations were, I devised a rule for myself: information = ammunition. You see, anything my mother knows about my life will be twisted around and used against me. Today, tomorrow or ten years from now. And the end result, that ammunition, may bear no actual relation to reality. She takes these bits and pieces, turns them over in her mind, and makes what she wants of them. So my #1 rule of self-protection in this relationship is withholding.

The other thing you need to understand, I will go into below the emails.

So…

A couple days ago,

Subject: [Mom's rheumatologist's name]

I had an appointment that got cancelled by him last week.

I finally saw him yesterday and had to have a shot in my arm, because it is in bad shape,
It is better today,
But the reason I am writing this
Is for two reasons

[Dr]’s  Mother passed away from a brain tumor , he was grieving very badly, he said his mother told him that he aught to be happy she was dying that he was wanting to be rid of her anyway, he said can you believe that, those were her last words to me, I can only hope that was the brain tumor talking.

We talked for 20 minutes or more, and he gave me a hug and told me thank you for talking to him.

The other reason is, I have to lose more weight, so he gave me the name of an all natural supplement that you can take called [omitted], bottle hold’s 120 pills,. That’s two month supply.  You can get them at [omitted], $28.99 if you do not have one in your part of the world, you can purchase them online, he assures me they will cut my appetite and help me lose weight and they will not harm me., and you can take them with Lyrica [the one medication my mother knows I take].

And then today:

Belly-Flattening Pork Tacos
Straight from our Flat Belly Diet, this recipe fires up your taste buds while melting off any unwanted flab.

So here’s the other thing you need to understand: Up until a couple years ago — after I moved across the country — I was super skinny. This was a huge point of contention in my family circle. All gather ’round Amanda to lament how unfortunately skinny she is and what must be wrong with her! I remember it when I was six, and twelve, and sixteen. I gained a small bit of weight when I was eighteen, after starting the Lyrica. That made me still-skinny, just not scary-skinny anymore.

Then I shipped all my belongings to Pennsylvania. I’ve returned home only once since — two years ago, for our wedding. In that two years, after a serious hormone treatment for my endometriosis, I’ve gained around 30lbs. But my family doesn’t know that, because there was never any reason to tell them.

***

I remember having a bit of a pudge belly when I was little (partly because I’ve always had a slumpy posture due to my chronic pain), even when I was super skinny. And my brothers (a generation older than I, and also mentally ill) teased me endlessly for it. I had no idea what to think. I mean, I was skinny, right? But I was being teased for looking fat? I didn’t understand, though I still felt the shame and self-consciousness.

I have very, very slim arms and legs (even now, slightly “overweight” — most bracelets/wristwatches dangle awkwardly off my wrist) with very wide hips. I remember when I was a young teenager, my mother, within a time span of about one month, criticized me for having “Holocaust legs” and then turned around and teased me for having my sister’s “thunder thighs.” My body had not changed an ounce in that time.

And now my mother — last she knew, I was still slim, remember? — is sending me weight loss tips.

And who knows what she means by it. I gave up trying to understand her thought process long ago. Again, it bears no relation to reality. Who would send their daughter passive-aggressive “tips” for weight loss (and oh, trust me, I have words for that doctor) knowing she struggled being underweight for most of her life? Perhaps she thinks that I have gained weight so now I need these tips. But there’s been no indication from me that I’m anything but the same skinny-minnie I was last she saw me — so if she thinks so, it was devised entirely within her own mind.

This sort of thing I have been dealing with for years now. When I learned to withdraw, and when possible discuss nothing more personal than the weather with my mother, she had a prolonged fit. I went through six months of absolute hell living with her before moving out here, and I am one-hundred-percent serious when I say the only reason I didn’t commit suicide is because I had two sick cats to care for. It was a perfect storm of severe panic attacks, untreated anxiety disorder, and an emotionally abusive mother going through an adjustment period (to put it lightly) when her daughter suddenly stopped talking to her — started going places without prior notice and without filling her in on every detail, and reenacting every conversation so that she could “share” in her life with her — stopped engaging when she tried to pick fights.

That was my life then.

My life now is considerably calmer, and happier, because my only contact with my mother is by email. I ignore all her forwards, and occasionally I’ll email her to talk about the climate here in Pennsylvania, or what the cats are doing right that moment, and … well, that’s about it.

In fact, she thinks I live in Philadelphia. Even though I have explained to her more times than I can count on both hands and feet that I live in the Pittsburgh area, which is across the state from Philly, in fact a 5-6 hour drive which is about as close as she is to San Francisco. Still, she sends me stories about things happening in Nowhere, Philly Exurbs and remarks how she never sees anything about us in the Philly papers.

Maybe it’s better off that way.

(Cross-posted at Feministe.)

That’s right. ME! Here’s my intro; be sure to check in at Feministe over the next couple weeks to see how things are going!

Whoops. Dozed off there.

Mitsy wants to know what the deal is with these chair things:

… and then retreats to her more typical hideout: the window.

I am lucky that my husband is employed by the state, and represented by a strong union, so his health care benefits are good.

I was upset when I had to transition from one side of provided-by-the-state care to the other, because it was considerable work for me and for my health care providers, but over time I have come to be immensely grateful for my husband’s benefits. Rather than filling 30-day supplies of my medications at retail pharmacies and, every month, running into some hang-up or another that left me without one of my medications, or having to space out my medications, for days or weeks at a time, I now receive all but one of my medications in full 90-day supplies (including four packs of birth control pills, not three!) with no hassle. I order the medications online, and if the prescription is run out, my doctor is notified, and he sends a new one in electronically, and everything proceeds as normal. My medications arrive in the mail within days. It is the easiest it has ever been for me.

So now I am free of what was probably the biggest burden I had to bear in obtaining reliable health care. The only medication I still receive a 30-day supply for is my Vicodin, which is not considered a “maintenance medication” (despite filling the same function as my Lyrica, tramadol, Effexor, cyclobenzaprine and Mircette) and thus must be filled retail. Even that process has been considerably smoothed since the insurance switch, though not devoid of problems entirely.

And now I never have to deal with obtaining a referral for anything that wasn’t a yearly checkup with my general provider. And I have a single insurer, rather than feeling guilty every time I handed over my four insurance cards to my doctors (my retail employer’s scammy discount non-plan, my Medicare plan, the separate HMO for my MAWD and then the MAWD itself) and knowing the billing hell they were going through just to get payment for their services.

Alas, though: my troubles are not over. My husband’s insurer, like so many other employer-based insurance groups, has become enamored of these “incentive programs” that are supposed to, you know, “provice incentives” for patients to “lead a healthier lifestyle!” Mainstream conservatives and liberals alike seem to love these things. It’s a way to pretend you’re addressing the God-awful fucked-up shabby mess that is the American health care system and its soaring costs, but without actually, you know, doing anything to make these patients healthier. Actually paying for the health care they could use? Pfah! No, just “incentivize” them to exercise more or stop smoking.

These “incentive” programs, more often than not, do not take the form of an actual positive incentive for such “good” behavior. More often, patients feel the effect of a negative punishment for not being the Super Fit And Healthy Ideal Able Body. They end up paying more in health care premiums (by losing out on a “discount” for being a successful participant) or losing their health insurance altogether. Or, they simply feel the burden of having to jump through hoops no able-normative person would ever have to — the second shift for the sick.

These incentive programs would not be worth the money and effort if there were not a stick behind that carrot, a way to enforce good health on the people. It should go without saying: health is not something that should be enforced.

My husband’s ensurer has a yearly health survey that all participants — including every covered family member — must participate in to be eligible for the lower premium. This is not a five minute survey; it is fairly involved. And I am always nervous about answering questions from my health insurance provider: more often than not, when I inform them of this problem or that — even those insignificant in the grand scheme of things — it results in a loss of coverage, increased cost, or additional steps I must complete to continue receiving the care that I do.

This nervousness comes, especially, from my time spent uninsurable on the individual market due to preexisting condition. When I was younger, I created and held steadfast to a very important rule with my own family: Information Equals Ammunition. In the insurance market, this rule is sadly just as applicable.

Every year, after taking the survey, my husband is informed that he is dangerously underweight and action needs to be taken to correct this state of being. My husband is 5′9″ tall and weighs around 120lbs. This is his natural state. He eats a healthy diet, he walks to work and back every day and gets a fair amount of exercise beside that. He inherited his very lanky body frame from his mother, who is even skinnier than he, and jokes that when she was pregnant she never actually gained weight; at the end of her pregnancies, she looked just like she does now, but with a basketball contained in her tum.

When my husband played football in high school, he was actively trying to gain weight both through diet and muscle-building exercise — and he plateaued at 140lbs. Now that he is not weight-lifting on a regular basis, he hovers around 120lb. This is a BMI of 17.7, barely more than I weighed when I was a teenager — the difference being that I was significantly undernourished, and he was more-than-properly-taken-care-of.

So once a year, he gets yelled at a bit about his weight. He is healthy in literally every other way, his one and only health concern being a minor bit of TMJ pain which he now has completely under control. But he does not fit the widely-understood able-bodied “norm,” and so Something Must Be Done!

I take the same survey, and of course I am provided with tips for stress reduction and admonishment to see a pain specialist. I am now very slightly overweight, so of course I am also admonished to “park further away!” and “take the steps instead of the elevator!”

Recently, I have been receiving messages on our home phone from our insurance company, encouraging me to call them for the opportunity to participate in an unnamed program, for unnamed rewards. These messages piss me off, so I ignore them, even though I know there is a strong possibility that it might mean our premiums would go up. I planned to contact them at some point or another, but it was not high on my list of priorities, and still they kept calling every other day.

Then I received a letter, in a tone that can only be described as a lament, that I had not responded and would I please pretty please call them, this time finally informing me that it was for their “Healthy Back Program.” Oh great, I thought. And I caved in and called.

The woman who answered gave me the spiel I expected. And my reply, in a sweet voice, was (closely paraphrased): “Yes, I have chronic pain from fibromyalgia and endometriosis,” and she replied with a somewhat disappointed “Oh” — but I interrupted to continue: “I went in last year for lower back pain, and I spent the entire year going through various programs and treatments to help it. I had to go under for a laparoscopy which led to being diagnosed with endometriosis, and I’ve now been through physical therapy and even have a personal TENS unit to address the pain.”

“Well, unfortunately that means you are not eligible for our program, because your pain is chronic…”

Mm-hm. I am sure you can hear my disappointment.

This is the same health insurance company which paid for all these tests and treatments and has on record exactly what my condition is, what the background is, what medications I am on and which treatments I am partaking in. I provided this information in the health survey. It is very clear that I have chronic pain conditions. But because I even mentioned low back pain — a common focal point for people who like to cry about “overdiagnosis” and “overtreatment” — I was immediately flagged and referred to this oh-so-special program.

It’s just one more little thing I have to fend off to be able to continue on my treatment course. Just like every time I visit a new doctor, counselor or other practitioner and have to patiently go over every disclaimer about why I am on this Vicodin and why I have this symptom and why this and why that, and that yes I am being closely monitored by competent doctors and am following my treatment course as prescribed would you please leave me the fuck alone so we can get on with things.

And it’s exhausting, always having to be at-the-ready to explain these things. It’s just exhausting in a way that no able-normative person will ever fully understand, period, and I am confident in asserting this. It just drains you, even though each of these encounters is small and relatively easy when considered individually. But it accumulates, it weighs on you, and the knowledge that you always have more to come — that is the worst of it.

This is what people with disabilities go through in a health-obsessed culture, a culture that sees personal health as a responsibility to the collective, and any person who in any way deviates from the designated health “norm” (which changes regularly and is not as science-and-reason-based as these people like to think) is failing their family, community and nation, that they are dragging them down — being a burden.

And we all know what the result is when disability, or any health abnormality, is constructed as a burden.

I never fancied myself a photographer, though, as a child. I colored and painted and sketched; I played with ceramics and sculpting clay, with yarns and plastics and pom-poms. All of that Meant Something; it was not what I did, but Who I Was.

And yet I played with photography continually; my mother would buy a roll of film and I’d have it filled within the hour. I loved to pick up my twenty-dollar Wal Mart 35mm camera, to follow the cats around the house taking pictures. It was so satisfying, the snap and rolling noises, removing the film at the end, excitedly filling out the film envelope at the store and waiting patiently for the week we could afford to get the photos developed — then pawing through the stacks of full envelopes, and breaking the seal, the anticipation of what might lie inside…

And yet I never imagined that I could call myself a photographer. All of this, it was not Who I Was. It was just something I did. It didn’t Mean Something.

I don’t know why.

Late in high school, just as my disability was setting in, I took a strong interest in photography. I had been working with the school newspaper, which was feeding my love of visual design, which had been developing since age twelve when I got a computer and started making my own web pages. I was the tech and copy editor(s), so much of the visual presentation of the paper was in my hands. And I loved it.

Photography was something that caught my eye: the art of photography has a strong basis in design concepts, and yet it resulted in something so much more … classic. Free-standing. Boundless.

I saved money, and did research, and between Christmas, my birthday, and graduation gifts in my senior year, I was able to purchase a “prosumer” level digital camera — not an SLR, but offering many more creative controls than your typical snapshot camera.

March of 2004 is when that small black beauty finally sat in my eager hands. That same month is also when I was just beginning to recover from the most severe and serious flare I had experienced, which had me out of school for several weeks that January, then kept from attending school continuously for some time afterward. I was just getting on my feet again that March, just beginning to catch up with everything I had missed until that point, just beginning to collect all of the make-up work I would have to do to get my report card out of the F graveyard… my very last semester of school.

I took comfort in this new little device. It was something to learn which did not weigh down my consciousness, fog up my comprehension. This was not book learning; it was tactile and visual, and it came naturally, guiding the movement of my fingers and positioning of my body to obtain fresh angles, and even the mathematical balancing, shutter speed and f-stop and film speed, was intuitive.

And it cost nothing, once I had the camera. No rolls of film, no waiting for developing. Just space on my hard drive.

My camera would become my best friend as I looked ahead to college, where I was to face multiple health crises and major life changes. Whenever I was not well, I had something to take comfort in, to help me escape from hostile reality.

There is something about photography that exceeds the intellect. Oh, you use your knowledge and intellectual ability to manipulate all the mechanics and mathematics involved. But it is so much different, so far from the problem sheets of school, occupying a different space in the brain, utlizing different mental muscles. It is grounded in that intellect, but it sprouts forth and grows endlessly, obeying no boundaries, becoming whatever you wish to make it be. No intellectual space can hold the zone I enter when I have that camera in hand.

My disability does affect this art. Most so, my hands are shaky, never steady, always moving, and with occasional spasms. I had so much trouble early on, finding it nearly impossible to take pictures requiring a low shutter speed (below 1/30). I couldn’t afford the beautiful machines that handled higher ISOs gracefully, which would have allowed me to play more within this low shutter speed situation. But they were beyond my reach — still are, really.

It has taken me years to learn how to compensate for this. Years and years of failed attempts, frustration, disappointment, self-criticism. And it has come only little by little. And it is not complete.

But there is a physical knowledge there, and my muscles are being trained to hold steady in certain places, certain ways. I have learned to brace against a wall, chair, pole or rail, or even my own body. I have learned tricks: to extend the LCD screen out to the side, so that I can hold the camera at both ends, keeping it safer from unintended movement.

I cannot steady my entire body. It is simply not a trick available to me. But I am learning where to focus my energies, which muscles to use which ways.

And my photos are turning out much crisper, clearer.

This comforts me. When my art is crisp, clean, readable, I feel the same inside. When it is foggy, unfocused, poor quality, I feel the same inside. I feel frustrated at my inability to communicate what is going on inside this complex body to the outside world.

Learning how to do that more effectively… that is a life-long lesson.

This one is pulled up from the archives. Buddy has some Chair Time.

A unit of time whose literal length is constantly changing due to rapid miscalculations of a computer wielding an operating system developed by Microsoft (i.e. Windows 95).

My husband had the brilliant idea to apply it to me and my various disabilities: the Manda Minute. To wit, “We’ll be out the door in five minutes!” will probably mean twenty, but it will change constantly as time progresses, and could end up being only eight minutes, or even — thought very rarely — two.

I try to be as honest as I can about time estimates, but there are so many fluctuating considerations and variables that it’s almost impossible to know for sure. I overestimate as it is, but chronic overestimation makes guessing useless anyway — if I say twenty minutes when it’s actually going to be five, what good am I doing anyone? and I’m going to be screwing with the medicine I have to plan out, the periods of activity and rest, and so forth.

Welcome to my life.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?

If you haven’t sent anything in yet, click here to see the details and submit your contribution. I would love to have more! And many thanks to everyone who has sent something in already.

I was in the midst of an awful whole-body migraine at the time, and ended up taking more painkillers than is technically safe to be able to attend the game. But this is the kind of thing that happens once in a lifetime, and it is one thing I firmly decided when I was a teenager in high school facing the choice between completing assignments or attending this or that social event (Prom and Grad Nite, mainly): there are times where I will sacrifice my physical wellbeing for the sake of participating in something that is important to me. I will not let my disability keep me from doing something fun, just because it is “fun” and therefore not allowed for the chronically ill (who face pressure to never, ever do anything that takes any sort of energy which is in any small way enjoyable to them — because then they are failing in their responsibilities to everyone else in the world, and seen as transgressing the dominant narrative of disability as a tragedy, something to somberly nod to one another about).

This doesn’t mean I abandon all responsibility and throw myself into every trivial thing that comes along. It means that I already have to sit out most events because of my disability, and I already have to put a disproportionate amount of energy into the basics of life, and I can’t let myself fall into that rut of always doing the more Serious and Important thing because that’s what I’m supposed to do, so yes, sometimes, I will say “fuck it,” bear the consequences, and go do that Really Fun Thing I was wanting to do, because I should not be denied participation in these things — sport games, concerts, art festivals, dinners out, parties, etc. — or shamed for daring to participate in them, just because I am disabled.

Anyway, pictures. I managed to get picturesof both Pittsburgh goals, as well as that crazy insane shift at the end of the game where Rob Scuderi stepped in front of the net and did some stand-in goaltending for the waylaid Marc-Andre Fleury. Enjoy.

The entire set

Me with Iceburgh, the Pittsburgh Penguins mascot (as posted previously here):

Inside Mellon Arena just before the game began:

Jordan Staal’s first goal:

Tyler Kennedy’s second goal:

‘nother panorama:

And the sequence of crazy man Rob Scuderi:

WE WON!!!:

The #1 Star, a.k.a. my “boyfriend” Marc-Andre Fleury:

A pano of the arena after most of the fans had gone:

And the laser logos the arena cast onto key buildings in downtown Pittsburgh:

Head over to check out the whole set.

“Halp”

Buddy has what we call “Chair Time.” There is something about these kitchen chairs that drives him crazy.

And Mitsy, true to her feline roots, fits herself into small spaces.

Cara posted about it at Feministe. And we do love Cara, but the thread there (and at Hoyden About Town) quickly devolved into fail, several directions of fail in fact. I just want to walk you guys a little further in one of those directions with me.

Candace left the following comment:

As a PWD, just know that I agree with almost all of what you’ve said, Lillith. I’ve seen sooo many instances of abuse, most often of people carrying their many shopping bags out of the huge mall and then pulling out of their accessible parking space.

I understand why it is so viscerally frustrating to watch seemingly able-bodied people act totally able-bodied while also visibly taking advantage of privileges meant for disabled people. I think everybody gets that, on a deep level. But this feeling comes from many places within us, and uncomfortable though it may be to admit, most are rooted in internalized ableism.

Coldneedles responded:

I have chronic fatigue syndrome. I don’t currently need accessible parking, but I can imagine it in the future because I’ve been declining quite rapidly. I could then very well be your so called “abuser” of the system.

Want to know why?

Well, if I live by myself I will need to go shopping at some point. To do frivilous things like buying food and clothing. I will calculate that I will suffer more if I don’t carry heavy bags. because then I will need to come back and use my precious energy on more driving, walking and even getting presentable so I can go out. Once I get back from the mall I will collapse into bed and not be able to do anything for the rest on the day, possibly even the next two will be affected.

But you wouldn’t see that. Neither would you see the things I have to do to make sure I can go- resting before hand, taking medication, taking rest breaks in the mall itself.

Would it be better if I was denied an accessible parking space, merely because I can technically carry heavy bags? Even if that meant I could not go to the mall to supply my basic needs? Even if that meant public places were inaccesible to me?

Coldneedles, you are not the only one.

Before I moved out here to Pennsylvania, I spent a year living on my own in southern California, attending Cal State Fullerton in Orange County. Ultimately, that didn’t work out for me, but I put up a good fight before bowing out.

I spent my first six weeks in the dorms before being kicked out, because they provided no priority access to housing for students with disabilities or distant students (CSUF was four hours from my hometown of Visalia), with 800 bedspaces for a school of over 38,000 at the time. And then I moved to an apartment about five miles away, in Orange. I began school that year in June, and was without a car until the end of September, leaving me dependent on the public transportation system. In Orange County, that meant the buses. I’ve written about the experience before, here.

So to get food, I had to use the buses. The nearest bus stops were about a mile away from my apartment either way. Then it was a short ride down the street — about a mile — to the nearest grocery store. Then, the walk around the grocery store, and then making my way back to the bus stop — through the bus ride — and the walk back to my apartment from there — now carrying all those groceries.

My disability is, and was, invisible. I managed to make those trips for those first few months. I wouldn’t've made it as long as I did if I didn’t eventually get that car, though.

I had to make a calculation, every time: 1) how much can I reasonably carry? and 2) how often can I make this trip?

If I carried less, that made the trip easier. But it meant I was going to have to make that trip again much sooner, and overall more often. Which would end up dragging down my physical health much further. But there was a limit on how much I still could carry. And if I tried to overstuff my tired arms to keep from returning too soon, it made my condition considerably worse in the short-term and only marginally better in the long-term.

This also meant I had to buy many more processed and boxed foods, because I couldn’t get too much that could be outside the refrigerator or freezer for more than the hour or so it took me to get home (between bus connections and the walks), and because I only had so much energy to prepare food for myself when I was devoting all this energy just to buying the food and getting it home. And, of course, that meant poorer nutrition, which didn’t help my physical state much either.

It was a calculation I was destined to lose, pretty much.

So yes, you might have seen me — a tall, slim, healthy-looking 20-year-old woman with no visible deformities who walks upright with a normal gait — carrying bags of groceries and walking a considerable distance with them, including up the flight of stairs to my second-story apartment. That doesn’t mean I wasn’t disabled.

You also didn’t see me slump those bags to the floor at the doorway, with only just enough care to keep them out of the door’s way so I could slam it shut as I slumped my tired body to the floor/couch/bed, and resting a few minutes before putting away what had to be kept cold but leaving the rest for several hours later, when I had rested more and finally recovered enough to get up and move around again.

This is a calculation I go through every single day of my life. How much work do I take on, and how do I pace it?

Take today. The cats’ litter box desperately needs changed, but I don’t have any litter left. And I need new tights for a job interview tomorrow morning. So I had to go out. And I went to Wal-Mart. Because Wal-Mart had both tights and kitty litter. And it wasn’t going to do workers any better for me to drive to PetSmart and then to JC Penney or Kohls, the two choice’s I’d've had otherwise, than to get those things at Wal-Mart. So I went to fucking Wal-Mart.

And when I got there, I took a normal parking spot. And it was a fucking mistake. I do my best not to use my disabled placard unless I know that I absolutely need it, because there are never enough spaces, and I don’t know who else might come along who might need that proximity parking more than I do, and I feel guilty about it. Plus I like to avoid the glares from people when they see that young slim white chick step out of her bright red two-door with a sun roof and a spoiler on the back (which was the best car available to us in a hurry when I totaled our old beige sedan a year and a half ago) with that blue disabled placard hung from the rear view. The less I deal with that shit, the better.

So I parked about fifteen spots farther away than I would’ve parked with the disabled placard. And I got out of my car and walked in the door. And there were no carts.

I laughed about it with the couple right in front of me. They picked up a basket. I didn’t bother, because the litter wasn’t going to fit in it.

I could have walked all the way to the other end of the store to get a cart, or gone exploring the parking lot for a stray one. But that was a lot of walking I honestly did not feel I could do — so I decided I’d just get the cat litter last so I didn’t have to carry it around the store. And that was going to be a serious physical burden on me. But it was the least physical burdensome option I had available to me right then.

So I walked over to the “intimates” section in the middle of the store and grabbed a box of pantyhose, then trekked back to the side of the store I started at.

I also need some new hair stuff (which is as much a matter of comfort as it is of looks). And I know my husband hates sitting there while I look over all the different stuff that’s available and compare ingredients and compare prices and so forth. It can take me a little while. So I figured, because the hair-stuff aisle was right next to the cat-litter aisle, I would use this time to do my comparison shopping. No one else was in the aisle when I walked around the corner, and I kneeled down where the stuff I wanted to look at was, and started looking.

At that point, a middle-aged woman pushing a somewhat older woman in a wheelchair came in. And behind her, another woman pushing another woman in a wheelchair. The second said “excuse me” and I looked up, ready to straighten and move out of the way, but it turned out she was merely teasing the first couple of women, whom they apparently knew.

The assistant women (so to speak) strolled the older women down the aisle, asking “Do you prefer any certain brand?” and picking one thing up to show them, and so on. And it made me grateful that, at least for now, I can do that sort of comparison-shopping without having to ask someone else to fetch the things for me — because I know myself, and I know I’d feel too guilty and “prideful” asking for something like that. Those are the sort of situations where I throw my hands in the air and deal without — whether it’s something Really Important that is actually going to affect me quite negatively, or whether it’s looking for new hair-stuff, or whether it’s trying on clothes so I can look the way *I* want to — because that little voice in the back of my head starts repeating, “burden”… and I don’t feel like I have a right to any of those things, the minute someone else has to do anything for me to have it.

And I couldn’t help but feel guilty, in the middle of this conversation: I, the slim young girl, standing there between two boomer-age women in wheelchairs, trying my best to give them space and not get in their way — and I just wanted so much to be known as disabled, too.

I was finished perusing, for the most part, so I rounded the corner back to the cat litter and grabbed the small box — which costs me more money, but I can’t handle the giant pail, even if my husband carries it in and out for me, because it’s too heavy to lift and pour from when I’m actually doing the box. But the “small” box was still 21lbs.

And as I shoved the pantyhose under my left arm, and picked up the box of cat litter and started walking, the first couple of ladies also rounded the corner. And I had to say “excuse me” because we almost ran into each other.

And oh God: having just wanted to connect to these two women, to be recognized as disabled, too — here I am carrying a very heavy box of cat litter in my arms, without a cart or anything, right in front of them. And I thought: if I had made any mention of my disability before, what would they be thinking of me? Right now, it was just “able-bodied young girl.” But if I had, would it now be, “Faker“? “Abuser“? “Oh my God, I can’t believe she has the nerve to claim to be disabled, there she is carrying an awkwardly shaped twenty pound box with no assistance, just look at her“?

Me, a few days ago on a “good day” with my hair done and dressed up, and then today, with my hair pulled back in the first shirt and pants I picked up.

I made a beeline for the checkout lines, trying to maneuver between crowds of people without having to stop or stray too far from my path. And there was only one express checkout line open on this side of the store, and there were four people waiting in that line and nowhere to set this box down. So I went to the nearest regular line, where I could set the litter box down on the belt behind two women’s cartfulls of groceries, and stand there longer than I’d objectively have been standing in the checkout line — but without somewhere to set this box down. (Lifting from the ground is simply not feasible for me, period.)

These are the sorts of little tradeoffs people with chronic illness make all the time. I was so flushed and in so much pain at this point, standing there for five minutes longer actually hurt me considerably. But it was less hurt than I’d've sustained the other way.

So I waited, then it was my turn, and when the cashier didn’t give any indication of an intent to move the litter from the belt to the bagging area, I laughed lightly and said “Yeah, leave that there. I just couldn’t stand in the express lane holding this, I needed to set it down. There were no carts when I came in…”

Why did I feel like I had to justify myself?

So I swiped the credit card, put the bag with the pantyhose in it over my arm, took a breath and hefted the box up to my chest again. And I made a straight line toward the exit. And now, there were eight or so carts in the cart area. So I plopped my purchases down in the cart, to take out to my car. Which was about five times as far a walk (from store entrance to car) than if I’d have used that disabled spot…

And when I got to my car, of course, guess what was waiting there for me?

So: I was a seemingly healthy twenty-three-year-old who drove herself to the store, picked up that twenty pound box and carried it to the checkout line and then out the door. Can you imagine what people would say if they saw me carry that box straight to my blue-line parking spot?

I am a disabled woman. Just because you don’t see it doesn’t mean it isn’t there.

This is an official request for your anonymous contribution.

I am working on a post about ableism in “liberated” sexual culture (including feminism, but not limited to it). And I really think there is no better way to illustrate this than with real words, real experience.

Do you have, or have you had, a disability (or, if you do not identify as disabled, do you have a condition which results in some sort of mental or physical impairment)? If so: Tell me about your experience in the bedroom.

Specifically, I am looking for ways your sex life differs from the “liberated” construct. I want to hear how your disability affects your sex life, in negative ways, in positive ways, and in ways that go beyond that dichotomy.

I want to make clear that “sex,” here, should be interpreted in the broadest possible way. Sex with or without partner(s). Het or queer. Any sexual bits included, any sexual act, no matter how long, short, light, heavy, simple or complex. If you think of it as sexual, then yes, it “counts.”

Some questions to start your thought process:

• What difficulties do you face?
  Is there anything you are prevented from doing, or prevented from doing “normally”?
• And how do you adapt?
• What do you do to make sex enjoyable?
  How do you change things, modify things to make them work for you?
• How do you create new ways to find sexual pleasure?
  What do you do that you’ve never seen anywhere else?
• Do you feel like you’re the only one who does (a certain something/a certain way)?
• What do you do? What do your partner(s) do?
• And how does it feel?
  What do you experience, what is going on in your body and mind, from start to finish?
• Do you orgasm? How easy or hard is it to reach it? Is it important to you to orgasm?
• What is it about sex that you enjoy? What is it that makes it worthwhile?
• How important is sex to your life?
  How much do you want it? have it?
• Has media portrayal of sex affected you? Societal attitudes?
  What have you seen or heard, been told, been treated like?
• What have you gone through in seeking health care for sex-related issues?
• Do you have any other stories or experiences?

I do prefer that entries not simply be answers to the above questions survey-style; I want to hear your experience in your words. Tell me a story — write me a poem — paint me a picture — however your experiences are best expressed.

Again: All answers will be anonymous. I will not attach any names, even pseudonyms, to these entries; they will simply be presented as they are.

To contribute, click here.

The link should take you to a page with one text box and one line for your email (which is optional).

If you need to contact me:
My email is amndaw (skip the second “a” in my name) AT gmail DOT com.
Alternatively, just use the form above to say “Hey, email me back!” making sure to provide your email address.

A few more notes:

If your contribution is anything other than unformatted text, contact me (see above) and I will work things out with you. For example:
If text formatting is important to your piece, you can send me an Office/OpenOffice document.
If you wish to express yourself in visual media, you can send me a still image of any file type — I will do any conversion necessary to display in a web browser.
If you prefer to create a video, you can send me the video file (I can point you to services for sending large files if need be, or I can help you upload it to an anonymous account for this purpose).

If there is anything in your piece that can potentially identify you (especially recorded image, video and audio), and you are absolutely comfortable with that, that is fine — but I prefer that anonymity to remain the default, so that more people feel safe and comfortable in contributing.

A tentative due date for submission will be Saturday, June 13, 2009. That gives you roughly two weeks. If you want to contribute, but that time frame does not work for you, contact me and I will see what we can do to make things work.

[shameless] Link around!! The more entries, the better. [/shameless] :-)

Thanks so much to everyone!

this post may be a little inside baseball for those who aren’t active in the feminist blogosphere, but i think its an issue that translates. what to do when a big and influential blog or writer consistently posts things that are offensive, or marginalizing, or just plain stupid? is it better to stay part of the discussion to offer corrections and insights and laternatives, or is it better to save up your limited sanity points and bail on the forum all together?

i’m thinking primarily of the feministing blog here. it’s a huge feminist blog, probably the biggest general feminist blog, and it gets a whole lot of traffic. however, it puts forth a primarily white primarily non-disabled primarily cis-gendered primarily middle/upper class view of feminism, either by eliding those issues to the point of invisibility or by explicitly dismissing them. there was (and still is, afaik) a call for trans people to boycott feministing because of the way they handle trans issues, especially the comments in this particularly nasty thread. just this morning, there was a post about sotomayor that denied the intersectionality of her race and gender in the critiques of her nomination. and a recent comments thread in which people admonished as ableist for using the term “lame” whined about being oprressed by the P.C. police.

as a result, i’ve dropped feministing from my blog reader. i was annoyed more often than i was informed. it made me feel disappointment, rather than kinship, with the feminist community on that site.

but. then i see people like renee trying to make a point about the racial politics on the blog and getting totally shut down and dismissed and attacked by fellow commenters for making a good point that needed to be made. and i think about how much bullshit she is opening herself up to just for asking why the one feministing blogger of color is always the one to post about historic events of importance to people of color. and i feel like i should be there, supporting her, supporting those critiques. especially because feministing is such a big and prominent site and it can often serve as one of the introductions to the feminist blogosphere. i started there before i discovered womanist musings and the curvature and questioning transphobia and the like.

so - am i a better ally by refusing to engage with problematic forums, or by participating in those forums to offer relevant critiques? i still don’t know.

And this post is going to ramble in a slightly different direction than Abby is going here, so bear with me.

I think there are a couple of different things going on here and it’s worth trying to tease them out:

1. engagement with a space that is hostile, indifferent, or even just a mixed bag when it comes to an identity group you are a part of

2. engagement with a space that is hostile/indifferent/mixedbag when it comes to an identity group you are not a part of

1.

It comes down to a bottom line of five words: are you up for it?

It is a decision based 100% on what you personally feel you can do. You are doing what work you can, in any number of areas in life; you are not obligated to be there for every stupid word uttered by every clue-challenged person out there. You can engage if and when you feel up to it. It’s your decision whether 1) this is a time pushback should happen and 2) you feel like you can handle being the one to do it.

There is never a time where it is acceptable, in a situation where a privileged person does something stupid &/or harmful, to hold the person harmed to account for it. The onus us on the privileged person to not do that stupid/harmful shit. Not on you to somehow miraculously be up for every fight.

Sometimes, the fight will make some measure of difference, and sometimes it won’t. Sometimes, you can take that fight, and sometimes, you can’t. Or don’t feel like it. You can fight the good fight, even if it isn’t going to go down in the history books. Or you can skip it, and save your energy for other things — from another fight, in another place, on down the line — or for a hot bath later that night. You have a responsibility to you and yours; when it comes to collective responsibilities, where there is a conflict between one’s immediate, personal life and one’s group identity, the rule is: blame for any damage incurred falls solely to whoever the person/group is that you would be fighting. The ones who did that stupid shit in the first place.

2.

As a friend or ally, a person with privilege but who cares for justice for an unprivileged group, there really is no easy answer. Sometimes, there isn’t anything you can “just do” to make the problem better.

(Remember, you are a person with an obligation to do right by others — not a superhuman taking on the noble burden of saving the poor helpless Other. The difference between the two is that the latter makes the privileged person who the story’s about — the former removes the privileged person from the center of the conversation.)

Certainly, the privileged person’s choice to abandon a venue with a history of problems is a choice based in immediacy: it makes things easier for you; it relieves you of having to face those uncomfortable moments.

It does not follow, however, that the privileged person is obligated to stay at that venue and keep fighting. It’s not that simple, not that easy.

And this is where we must understand the importance of roles in the struggle for justice. Because there are many different roles to play, many different approaches to take, many different areas to address.

We — as a world of all people –need to keep each other alive,
need to free us from violence and hatred,
put food on our tables,
ensure our health,
keep our families together.
We need to strengthen our communities,
treat each other with respect and empathy,
accept difference, accept similarity,
but place no moral weight on one over the other.
We need to fight against hostile attitudes,
push back against stereotypes,
break out of confining narratives.
We need to examine and deconstruct
privilege
power
oppression
We need to know what they are and how they work
and we need everyone else to know it too.
Because, as much damage as you can still do as a person who understands these things, there’s no way there will be widespread change until many more people understand them too.

Here’s the thing — the immediate and the collective both need help.

So, it is useful to get in there, when someone says something stupid, and explain why that thing they said was so doggone stupid.

Even if it isn’t at some international press conference. Even if it isn’t many people. Even if your feeling is that those people aren’t going to go on to be murderers or congresspeople or someone who does something Big.
Even if it’s just you and that guy down the street. Or you and that ass on a message board.

Because if we eschew all action that isn’t Big Enough, will we ever do anything? If we give up because we can’t Make It All Go Away, In Just One Easy Step, are we doing anyone any good?

HOWEVER. And this is one great fucking big However.

If a person without your privilege takes you to task — personally or indirectly — because you’re sitting over there squabbling with Joe Know-Nothing down the street when sie is still hurting — you take that.

Sie might need food on the table, or affordable health care, or safety from violence. Or sie might want more attention on this court case, or help getting this piece of legislation passed. Or sie might want financial help to get this community project started. Or sie might want more direct engagement with hir, rather than talking amongst your privileged selves as those sie (and those like her) just don’t exist. Or sie might want more people to fight the good fight in another venue, for any number of reasons –

Sie has the right to be angry with you for not spending energy in the places sie feels are best. Because sie has the ultimate right to determine what makes an actual gdamn difference to hir.

That might put you in a bit of a bind. Because there isn’t any one easy thing you can Just Do and know that you’re doing the right thing and no one can be anything less than satisfied with you for it. There just isn’t.

So do you stick with it? Or say fuck it and quit (that particular venue)?

Well. In that case, you make a decision based on what you feel you can personally do best. You make a decision. And it is what it is. And you move on.

I don’t think this is quite what Abby was looking for — it’s not a practical answer, information that makes it easy to make that actual particular decision.

I think, mostly, it’s just that I never see this point being made: that we should all know that it doesn’t matter what we do, things will still be fucked up and we will still have responsibility.

But that’s not a call to apathy or despair. And it’s not an exoneration.

It’s just trying to remind us that we aren’t the center of this conversation. Do what you gotta do. It might be a hard choice (for me, feministing is an easy choice, but feministe is a hard one; that might be different for different people). And you live with the implications. Just know that it’s not going to tie up neatly in the end. That’s how things go.

I went through a moderate redesign a couple months back. I think it is prettier. If you read from a feed reader and haven’t been to the site in awhile, click through!

Listen without interruption. (Embedding disabled, you have to click through.)

There are so many times, so many situations, where this song is just the right medicine. Listen. And then watch the video. It provides the right context (despite the annoying interruptions), but most of all the video is simply captivating.

Every time this song comes up on my playlist, my mind just stops and I escape into that video for two minutes.

And then I go back and play it again.

“I’m Not Like Everybody Else” (The Kinks)

I won’t take all that they hand me down,
and make out a smile, though I wear a frown,
and I won’t take it all lying down,
’cause once I get started I go to town.

’cause I’m not like everybody else,
I’m not like everybody else,
I’m not like everybody else,
I’m not like everybody else.

And I don’t want to ball about like everybody else,
and I don’t want to live my life like everybody else,
and I won’t say that I feel fine like everybody else,
’cause Im not like everybody else,
I’m not like everybody else.

But darling, you know that I love you true,
do anything that you want me to,
confess all my sins like you want me to,
there’s one thing that I will say to you,
I’m not like everybody else,
I’m not like everybody else.

I’m not like everybody else,
I’m not like everybody else
and I don’t want to ball about like everybody else,
and I don’t want to live my life like everybody else,
and I won’t say that I feel fine like everybody else,
’cause I’m not like everybody else,
I’m not like everybody else.

Like everybody else,
Like everybody else,
Like everybody else,
Like everybody else.

If you all want me to settle down,
slow up and stop all my running round,
do everything like you want me to,
there’s one thing that I will say to you,
I’m not like everybody else,
I’m not like everybody else.

I’m not like everybody else,
I’m not like everybody else.
and I don’t want to ball about like everybody else,
and I don’t want to live my life like everybody else,
and I won’t say that I feel fine like everybody else,
’cause I’m not like everybody else,
I’m not like everybody else.

Like everybody else (like everybody else),
Like everybody else (like everybody else),
Like everybody else (like everybody else),
Like everybody else.

It was a great experience — I love the DC area and I was excited to go back. But five hours in a car makes for stiff muscles, and I was already dealing with some endo flareup. So I was dealing with spasms and pain even with my TENS on (here’s the trick: if you have a big bag, security doesn’t bother patting you down when you enter) and more painkillers than I should have taken.

We had nosebleed seats but whatever, they were seats. It was a great game, even though we lost. It’s hard not to enjoy an NHL playoff game. Especially being able to whisper at each other about the clueless fans behind us who had several amusing misconceptions about how the game is played. (It’s fairly doubtful that the linesmen are biased in calling off-sides. It’s one of the most objective and least arguable calls there is. But “they only ever seem to see ours!”)

Throughout the game, the people behind us kept tapping my shoulder and yelling at me for leaning forward. They “couldn’t see.” Of course, everyone else in the section was leaning forward, and I couldn’t see without doing it too. But most of all, my back was killing me, and doubling over stretches the muscles in a way that helps relieve some pain. (Ask mattw — I sleep in the same damn position.) I tried sitting back for part of the second period but couldn’t last.

After a few times of them tapping me, toward the end of the game, I turned around when they tapped again and stuttered, loudly, wide-eyed and annoyed, “I have a disability — in — back in a lot of pain –”

and they sneered and threw up their hands at me. So I turned back around.

I was steaming inside. I complained to mattw on our way out when the game was over, noting that my TENS was turned up all the way and I’d already taken way too much medicine. And when we reached the bottom of one escalator, the couple behind me tapped my shoulder and the middle-aged bearded guy said, with a smile, “They meant it nicely.”

There are several things going on here. We were wearing Penguins shirts at a Capitals game, and there’s a budding rivalry there. It’s a playoff game, and there’s the whole MVP debate going on (Malkin vs. Ovechkin), so of course it’s contentious. I severely doubt they would have bothered me if I’d been wearing red & blue rather than black & gold. So I understand it. All in good fun, in that respect. A little rivalry can make the sport more fun.

It’s a national sports game, though. At a huge arena. Some people pay attention to the game. Those people might lean left, right, forward, backward, so on. And as long as they aren’t standing up all the time, or wearing a very tall hat or something, that’s accepted, and you work around it. You lean one way or the other to get a better view. People move around as the puck moves around the ice to see better. You move too. And when things are really tense, they probably scoot closer to the edge of their seat and lean forward. So you do the same. And at the very end of the game, people often stand up. Which means you stand up too. IOW, it’s a rather ridiculous thing to complain about, no less multiple times, and angrily (not politely).

Finally, their reaction mattered. When I spilled out why I kept leaning forward, they didn’t do what I expected — look away awkwardly and quiet down as though nothing was ever said. I’m used to that. But instead, they kept gesturing and yelling at me.

That’s what’s so frustrating. It’s not respected at all. Or only respected for so long as it has to be — when you have any reason no matter how trivial to discount that person’s experience or opinion, respect goes out the window. People with disabilities are “protected” in this society only insofar as they are nonthreatening. And that protection is paternalism at its extreme. But that’s a separate issue. When they aren’t subjects of protection, they are objects of harassment.

It isn’t the worst case of harassment I’ve had related to my disabilities, but it bothered me.