Things I’ve been meaning to say for some time.

1.

I am really bad about keeping up with my blog roll, followers, and reading. I am usually up to a week behind in Google Reader. I take a long time to finally get around to subscribing to the RSS feed on a blog I have been reading and loving for some time. And even then I take awhile to add it as a link. I also have the problem of figuring out how heavy a particular blog will be in content — in either length or frequency — and whether I will be able to handle adding it to my reading load.

Last year before I began my full-time job, I went through and culled every blog I could bear to part with (mostly the white liberal boy-blogger types, such as Washington Monthly) that aren’t bringing any news I don’t get from other sources, and aren’t giving me a perspective outside the mainstream dominant-group perspective (that is: Western, upper-middle class, white, cis, straight, abled, educated, etc.) This means I have a lot of trouble in that I keep coming across new blogs and writers I want to follow — but I honestly can’t get myself to stop reading the other people I still have!

There are people I come across, or people who link to me or follow me, and I take a long time to finally check out their sites, and if it appears to be a fairly heavy/frequent blog I usually put off adding it to my reading. :-\ But I am not ignoring anyone on purpose.

2.

I have a lot of trouble writing crisply and coherently on a consistent basis. Sometimes, the words flow without trouble. But most times, I am really struggling to translate thought to speech. A lot of this is what is often called “fibro fog” or brain fog. It’s a state of cognitive impairment common to fibromyalgia patients that makes it difficult to focus or concentrate, makes it hard to recall words, makes it hard to organize thoughts. It is so named because it feels like a thick, heavy fog settling in on your brain. It is hard to push through, hard to see where you are heading and how to get there.

I described it in my about page thusly:

I often have difficulty translating ideas into coherent sentences or pulling up a particular word important to conveying my meaning. My writing may be imprecise at times, like describing the buildings, greenery and landmarks surrounding my house without being able to describe the house itself. When I am angry it gets very bad — or maybe I get angry because it is so bad — and I can grow very frustrated at being unable to untangle the mess of ideas in my head and translate them to cohesive, understandable sentences.

Another aspect of it: I feel like my brain groups words together based on similarity in meaning — but files away all but one of those words. So I have trouble speaking precisely, using the right word for the meaning I am trying to convey, because I can only access the one word from that group, and no matter how hard I exert myself I just cannot pull up any of the other words. And the way my brain organizes these grouped “files” is haphazard, so I may not even be looking in the right group, so to speak — it may just be a group with a loose association to the group that contains the accurate word for whatever concept I am trying to express.

This gets very frustrating, to say the least.

There is another, much more personal reason I have for having trouble translating concepts-inside-the-mind into words-on-the-outside, having to do with my past and childhood, which I may elaborate on in the future. But that will have to be a long post, and I don’t have room for it here, at this time.

3.

I am a flake.

There is no way to get around it. It is who I am. I always have been, and always will be, a flake. No amount of effort, will power, meditation, medication, or otherwise will ever change it, because it is fundamentally what I am.

For a thousand different reasons, physical and mental and emotional, legitimate and il-, excusable and un-, understandable and not, I simply cannot hold true to every commitment. I am apt to forgetting things — anything — my cell phone when I go out, or to close the window in the kitchen when I turn on the air conditioner, or to read or respond to an email (no matter how important; ask both my husband and my best of friends, and they will inform you that they, too, have had it happen — often), to participate in an event or project I expressed interest in … even a very important doctor appointment for which I have been waiting for a long long time. Just last month I actually triple-booked myself at 2 p.m. on the 27th, for a doctor’s appointment, counseling and physical therapy.

I am a flake. It’s what I am. No matter how important something is, how much I care about it, how many check-points I set up to ensure I remember to do it. I am still prone to forget, delay, procrastinate, lose track of.

I’ve given up on changing it, because all it did was foster guilt and self-worth criticism and never actually changed the behavior itself. So what the fuck good was I doing — to myself or the other people who may be affected?

I am a flake. It is who I am. It will never change. And I’m not going to apologize for it any more.

That’s all for now.

From the beginning, we knew I was an artist. It has always been a part of my identity, something everyone simply knew.

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.

Look, the fuss around whether race is a feminist issue (not just race, but race is a particular sore spot) boils down to this.

When people ask

“Why is X a feminist issue?”

what they’re really asking is

“Why should I care?”

I’m sorry. There’s no way to get around it.

The following is for my fellow white chicks. Bear with me, everyone.

If you are committed to feminist activism, what you are committed to is a framework of social justice built around gender. Right? You with me? What you care about is, specifically, women. But more broadly — stay with me here — what you care about is justice.

Right?

Gender is the organizing concept for you, most likely, because you are a woman. Ya? The way society organizes itself around gender makes you particularly aware of its effects, and that sparked your interest in this activism.

But that is just fucking ridiculous. Yeah, you’re a woman. But you’re also white. Why doesn’t that make you particularly aware of the way society structures itself around race? I’ll bet you don’t think men are ungendered — come on. So why aren’t you also dripping with race? Why isn’t race your organizing concept?

I’ll let you think for a while on that.*

Really: Why isn’t it worth your time to consider race in the same frame of mind you consider gender? Do you think that because you are white, it doesn’t affect you? I beg to differ! And I’ll bet you think men are negatively affected by society’s gendered structure too.

Do you think that there is nothing to learn, no benefit gain, for you or anyone else, from entering a framework other people have built, which doesn’t center around your world? Do you think it will have no relevance to your own life? Do you think it will have no relevance to your own activism?

Why is it that you have to be cajoled into showing some fucking respect for anything that doesn’t revolve around you and your experience?

You care about justice — right? Isn’t that, ultimately, what it comes down to? If you agree, then why are you putting up such a fight? What are you fighting for?

This is what I think.

Feminism is a framework dedicated to social justice, built around examining… let’s leave that blank for a moment.

Feminism is a framework dedicated to social justice.

Feminism cares about every person, no matter their (blank).

Feminism says, you deserve good, because you are a human being.

Feminism says, (blank) should not affect whether or not you receive that good, and we will fight to ensure that.

Feminism wants every person to be treated with respect, to be allowed dignity, autonomy, and self-actuation, on the basis of their shared humanity — and nothing else.

Now, to fill in that blank: feminism is a framework dedicated to social justice, built around examining gender.

But gender is not the only social construction thrust upon your unsuspecting self.

If it is the only one you see — or the one you see most clearly –there may just be a reason for this.

Has to do with social construction n stuff.

That’s all for now, folks.

—————————————————————————————

* BONUS. It killed the flow, but it’s important.

Consider also these: are you straight? younger in age? able-bodied? middle class or higher? If so: why haven’t you devoted your energies to activism built around age? sexuality? ability? Anything? — Beuller?

Is it because you don’t think those things really apply to you? But come on — you don’t think men are ungendered. So why aren’t you also dripping with these things? Why aren’t they your organizing concept?…

for Christmas, i sent my mother a gift card for a local grocery store (she was already in awful shape financially — add in a ballooning ARM and a serious recession and things get pretty bad). i asked if the locations were any good (there were takeovers going on when i was moving two years ago). her reply,

“yes we are going to Food 4 Less they built one on North Court, you can only go there in the daylight, too many shootings”

mmmm, home.

i work in an office now dealing with those same people, those people everyone is so afraid of. the poor people. and especially those who are racial minorities (well, actually racial pluralities where i grew up). you know, the trashy people, the ghetto people, the gang members, the baby mamas and welfare queens.

when i moved out on my own in 2004, a four hour drive from anyone with whom i had even acquaintance, i was warned profusely about the dangers of being a young, single girl out on her own. in public or in my home – no matter, it’s all dangerous. really i shouldn’t be going at all, because you never know what could happen to you, you know, around them.

living in orange county i found in my college peers a strange aversion to using the free-for-students bus system to get around. the system was clean, safe, with good frequency and practically no point at which there wasn’t a stop within a mile at most. but these kids just couldn’t bring themselves to use it. my roommate was without her car for one day, just one day, and she skipped classes altogether rather than take the bus to school and back. my conversation with her made it quite clear why. she felt it was beneath her. and, my curiosity piqued, i found similar attitudes in many of my classmates through my time there.

why? what is it about the bus that makes it so untouchable? it’s not the bus system itself – again, impressively clean, incredibly easy to use, and free! throughout the entirefuckingcounty! no – it wasn’t a systemic problem. it was a problem of proximity. proximity to them.

and, ok, it annoys the shit out of me.

you aren’t going to die of the ghetto cooties if you find yourself within a couple yards of a poor person. they aren’t going to bite you. stop acting like you’re passing through the lion cage at the zoo.

this middle class obsession with “safety,” with where’s a “good” area to live, and especially where is an acceptable place to raise a child, with the very heavy implication that allowing a child contact (especially regular contact!) with the cooties-carrying poor folk is tantamount to abuse – it drives me absolutely upthefuckingwall.

i’m just tired of it. look: i grew up with Those People. hell: i grew up being part of Those People. and though i am mostly comfortable financially now (it’s nice, having a husband who can work full time, not having to rely on anemic disability benefits) we still live surrounded mostly by Those People. Those People are my people.

and i say this as a moderately conventionally-attractive skinny young white chick who dresses and behaves like a solid member of the middle class (trust me, i learned how to “pass”) – all the things which supposedly make contact with Them so dangerous – as long as you aren’t stupid (you know, the old flashing-your-cash cliche), you can walk among Them and make it out alive. because really, when you get down to it – look: They are the same species you are. you can even breed with one and produce fertile offspring! (well, i guess that’s not that much of a revolution – it seemed to be about the only purpose the higher classes [that's you too, mr. middle man] had for direct contact with Them throughout history…)

anyway – if you understand these people as people, and learn a little common sense (that is, not limited to “stay away altogether”) you’ll do just fine. even if you’re white. even if you’re middle class. even if you’re a chick. even if you’re all of the above!

and maybe if more of “Us” started treating “Them” as, well, us (and not in that fakey feel-good liberal way) maybe we’d find out that there’d be much less reason to stay away from Them than we thought.

This has been a rather curious endeavor, working at a state office that provides assistance to several disadvantaged groups — and being able to see things on the other side of that reinforced wall. It is an interesting perspective. And I think having a background (however limited) in disability rights and other issues of social justice helps me understand far better what is going on. I’m not sure about you, but I can hold two opposing ideas in my head at the same time and manage to see the truth in both of them. I am large; I contain multitudes. There are honestly many things that are beyond our ability to fix, address, or really do anything other than acknowledge, if that. Sometimes, there is nothing we can do. And yet — and yet. Are the way things are the way things have to be? When the way things are means our rights cannot be fulfilled, must we abdicate them? Are our minds, our worlds, so limited?

I think I’m glad this is a limited-term job; I am still debating myself over whether I can really handle this. But for the time being, well, I will. It’s who I am. And honestly, I love it. I only wish my body allowed me the option of doing anything else too.

So this is what I have been doing. I’m doing my best to restore, slowly and deliberately, a careful balance to my life. Come say hello.

amandaw on tumblr — for quotes, short thoughts, and other collections.

I hear it in just about every political commercial now. What does it mean?

“He shares our values…”

“Family values”

“American values”

“Traditional values”

If nothing else, this election season makes one thing quite clear: in a sociopolitical context, the word “values” is nothing more than a code word for “white.”

Welcome to the fatosphere, amandaw.

5′8″. 173lbs. BMI 26.3. Sizes 12 and 14 top and bottom. 38-34-44.

My habits have not changed. I eat the same shit I ate six months ago, and get the same amount of physical activity (trust me, that is carefully monitored). The only thing that’s changed is the shot in the ass I get once a month.

After my body settled down from puberty, I was 5′8″, 110lbs, 16.7 BMI, sizes 6 and 8, 32-25-36. I had no appetite and was visibly undernourished. Fending off accusations of anorexia, I would insist that “I’m not fat; I have fat.”

Just before I turned 19, I started on the Lyrica, which gave me a normal appetite. After about a year of slow and steady weight gain, my body settled in to 5′8″, 150lbs, 22.8 BMI, sizes 8 and 10, 34-30-40. And there my body stayed for just about three years.

Three years during which I lived a variety of lifestyles, to use the popular vernacular. I ran around college eating quite a bit; I ran around college eating almost nothing; I sat around my mother’s house eating fast food at least five times a week; I started working on my feet eating healthy portions of home-cooked family means (sandwiches, chicken, grains, pasta). And I stayed the same weight through all of that.

Last night, I went to a friend’s house to try on suits for an upcoming job interview. She used to work as a paralegal, so she had an abundance of suits. She is, well, the average American woman size-wise. She had several suits mostly in 10 and 12 but across a range of sizes.

I tried on every suit. I think there were seven or eight.

None of them fit.

OK — one fit… if I didn’t zip up the pants.

I was fucking humiliated.

I haven’t been able to fit my own jeans recently. I am fortunate that the only thing I’ve had to leave the house for recently has been physical therapy, so I’ve had official excuse to appear in public wearing sweat pants.

The friend was very helpful, and we ended up at Kohl’s where she bought me a fitting skirt, pair of pants, button-down top, and thong.

(Which makes her the first person to ever buy me underwear.)

I was not well. I had done far too much that day, to begin with: wake up early, physical therapy, driving to Canonsburg and back for aforementioned syringe in the ass, and shower, all without a single pain killer. I should have known to take one before going to the friend’s house, because trying on clothes always exhausts the hell out of me (I’d put it on the level of a long shower in terms of physical cost). But I didn’t until all the clothes-trying-on was done.

The physical consequences should be obvious, but something else happens when I’m in that kind of state. My brain goes blank. I am putting so much energy into staying awake, alert, upright, and minimally active that I don’t have any brain power to spare — to form coherent sentences, find the right word for the idea I am trying to express, offer responses that are relevant to the topic being discussed, or just plain make any sense.

Being social in this state is hard enough. It’s even harder when there’s the dark cloud of humiliation hovering over your head.

I looked myself in the mirror. I arched my back, sucked in my stomach, straightened my shoulders.

The gut didn’t go away.

God. I don’t know how to say this. It’s hard. It’s really hard. Up until recently I still saw myself as the skinny chick. My brain still thought it was stuck in the body I inhabited as a teenager.

And now? Now I’ve finally caught up: my brain feels like it’s stuck in the body I inhabited those three years prior to the Lupron.

I was OK, mostly, as I grew. I’ve been involved in fat acceptance for a while now, and body positivity has been a pet issue of mine for years and years; I trained myself to stop finding things to disparage, whether in myself or others, and instead find things to treasure. I accepted my fat rolls, and welcomed the substantiating of the tits. I admired my ass. I was building muscle; my thighs are thick and solid and I rather like them that way.

But now I can’t fit in my fucking clothes. And it’s fucking embarrassing.

***

I have a lot to deal with, personally. But right now I am fervently hoping that cessation of the Lupron will go hand-in-hand with shedding of the weight I’ve gained. I’m already damn sick  of it. The first month I suffered worse pain, dizziness and tremors and fainting spells; I had two months of reprieve after that, and in the last month the back pain came back like a boomerang and hit me in the ass, and brought with it cramping, nausea, and a scary amount of hair loss.

I have two months remaining. One more shot.

I’m scared. I’m scared I’m going to keep gaining. I’m scared there are some new and even more bizarre side effects in store. I’m scared that after the Lupron is done the pain will come right back. I’m scared it won’t have done anything.

I’m scared that all of this will be for nothing.

I’m scared that the Depo won’t do my body any better. I’m scared my periods are going to be as bad as ever when I come off the birth control. I’m scared we’ll end up running into trouble trying to conceive. I’m scared pregnancy is going to wreak havoc on my body. I’m scared of birth. I’m scared I won’t be able to keep up with kids once I have them. If I have them.

Most of all, I’m scared the pain is never going to go away. I’ll be thirty years old and living with the knowledge that I’m not even halfway done living and I’ve already exhausted all my options.

And when I look at that prospect, honestly? I want to die.

***

I meant this post to be about body dysmorphia. Fat. It ended up being something else.

I don’t know. I’ll be ok. But I’m struggling.

how utterly stratified our society is.

I’ve been hearing radio ads for the PA Governor’s Conference for Women for months now, but recently (and before the unfortunate breaking news) touting speakers such as Elizabeth Edwards, and, uh…. I mostly really don’t register any of the names after hers.

So I figured, lazily, hey, I’ll go check out that web site, and it tells you to save the date (October 2) and I think, you know, I wouldn’t mind going. I mean, I’m utterly meaningless to any of the people who are going to be there, but I would love to hear Elizabeth and I would similarly love to hear many of the other speakers — it seems like something that wouldn’t really be a business opportunity for me (but maybe they’d take pity on the young disabled just-trying-to-get-a-job-as-a-secretary girl? I dream, I dream) but it would be an enjoyable experience, so if I wasn’t working, you know, I wouldn’t mind spending my spare energy, you know?

And then I click on Register Now! out of curiosity and I find out it’s not just energy it would cost me.

These prices are valid through September 2. Prices will increase on September3.
	General Seating	$125
	Table of 10	$1,250
	Mother/daughter combo	$200	Each additional daughter $75
	Student	$60	Student ID required

…. yeah.

This reminds me of the first flight I took, LAX to PIT to visit mattw back in May of ‘05. I’d only ever flown in a tiny puddle-jumper, but I had taken an Amtrak once when I was little enough to remember it clearly but also not remember why or where I was going. And you know how they have the concession car and you can get up and move around if you want, and buy food, and sit in the window car for a bit? Yeah — I thought that’s how things would be on the plane too. Silly me.

I mean. I grew up poor, and now I’m living the comfortable lower-middle life. And I have a pretty socioeconomically diverse network of friends and acquaintances now. But every once in awhile it still hits me hard. A ten-ton wrecking ball smack into my naive expectations.

I dunno. There’s really not much point to this post. I just feel shut out, wistful. It’s that realization that the world is so, so vast, but moreso the reminder that, well, that world? Is not for you.

ETA: I think what bothers me most is that I already knew that the conference wasn’t particularly meant for me. I’m a 22-year-old disabled girl who’s trying to move up to a job as a state-employed secretary. I don’t think I’d particularly have a place there. But I figured there would still be access, you know? But no; it’s closed off. I know this is how these things operate, but that’s rather my point; I grew up so far away from any of this, I had no clue. And every time I run into one of these unexpected roadblocks, I just feel like a friggin’ reject.

How the hell can Bush redefine abortion as “any of the various procedures — including the prescription, dispensing and administration of any drug or the performance of any procedure or any other action — that results in the termination of the life of a human being in utero between conception and natural birth, whether before or after implantation”?

EVERY ONE OF MY PRESCRIPTION MEDICATIONS FITS THIS BILL.

Including the Lupron, which is a Major Treatment during which we are very strongly advised to be double-extra-careful in the area of birth control, because it can cause major serious birth defects. The Lupron which I am taking to shrink endometrial implants which can fuse together my organs and completely sterilize me.

Fucking caffeine fits this description.

It’s not just oral contraceptives, folks. It’s treatments which have no relation to family planning whatsoever. Just think of all the prescription medications that would be restricted.

How the hell? How the FUCKING hell? Are there any lawyers in the house who can address this one?

Tagging this one under accessibility just to emphasize how much this policy would affect my medical condition and my ability to WORK, to HAVE CHILDREN, to LIVE MY FUCKING LIFE without debilitating pain.

Fuck.

Y-you mean… the handicapped have… sex?!???!

BFP touched on it in her post, but I wanted to emphasize the cultural reaction to a person with a disability* being at all intimate with a fully-abled person. Not only sex, but also intimate relationships. They reel. They gag. They wonder what must be wrong with the abled person for wanting to have anything to do with that… thing.

Who would want to fuck a cripple, after all? Why would anyone stay in a long term relationship with someone who is disabled? How can it possibly be a relationship of equals?

And that’s just it, isn’t it? The disabled person is not a full person — sie is inferior.

And who would want to deal with, you know, the wheelchair, or the medications, or the panic episodes, or the whatever… dealing with the disability would be too much of a burden, you know. And someone has got to be crazy to be willing to take that on. What could they possibly see in a cripple to make up for that extra load to carry?

I’m a far different person than I was five years ago, when Matt and I became “official.” Five years ago, I hated myself — in the way that the sun is kinda hot, or the Pirates aren’t too good at that baseball thing — that is, severe understatement. And I had quite the complex of why the fuck this young man would have any fucking interest in me, because clearly I wasn’t worth the trouble. This was fed by my mother’s Issues(tm) about men (she never knew anything but abuse, so she had nothing else to teach me) but it was also connected to my disability. I was only just learning that my life was going to be completely different because of it, and coming to terms with the fact that it was real and I was not normal and I couldn’t just breeze along through life as though I were normal anymore. So I was very, very insecure. And here’s this slightly older kid who struck up a friendship with me a year or two ago, and we connect pretty well and everything, and waitasecond he’s actually interested in me?…

My first thought wasn’t “WOW!” or “AWESOME!” or “*squeal**gurgle**lovestruck*” or “OMG I have to go tell my girlfriends!” — my first thought was: “WHY?” Why would this awesome guy have any interest in ME? I’m useless, and ugly, and worthless, and I’d be a huge burden, being sick all the time, and dragging him down, and why? Why?

I didn’t get a “honeymoon period.” I spent the first two years of our relationship, every time he would compliment me or say he loved me, explaining to him why I was undeserving of his consideration — or just asking him “why?”

And you better damn well bet that just about every pwd out there has jumped through those same hoops at some point…

*I hesitated in using the word “disability” to describe Troyer’s condition but really, that’s the class of people we’re talking about — people whose bodies/minds are just different and who have multiple obstacles to free, unrestrained participation in society. And the objection to using the word “disability” for this condition or that condition comes in part from a fear of the pejorative sense connected to the word “disability” — the negative connotation, the feeling that it makes a person deficient, less than. And folks, that’s what disability activism is devoted to fighting. I know there is fair disagreement among the disability community but, for lack of a more serviceable word, I’m going to try to own this one.