For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

• Older women should not have children because their children are more likely to have a disability
• Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
• Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
• Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
• Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
• It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
• Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
• Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
• Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
• Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
• To violate those cultural ideas means that you are inherently flawed
• The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at FWD/Forward.)

See, it’s an acronym, but it sounds like a snake. Ffffsssstttt. OK, I am easily amused.

When I began work at this full-time job, I asked my doctor if I could increase my Vicodin dose to 3/day.

I don’t take them strictly on schedule, but it averages out to about that amount. I’ve been taking Vicodin this way for half a decade now. I began at 1.5 pills per day, average, which barely allowed me to make it through two semesters of college, earning 15 credits altogether. Since then, punctuated by periods of rest and inactivity, I’ve started my first job ever, six to eight hours a week; then moved on to my first Real Job, twenty to thirty hours a week; then spent some time stutteringly employed before beginning this job, the much-talked-about nine-to-five, with a real salary and my very own desk. Up until that last, my painkiller use increased, overall, to 2/day.

Which is surprisingly stable, considering Vicodin is a narcotic painkiller typically used for acute, not chronic, pain. Most doctors (the ones who at least pretend to care, that is) are eminently afraid to prescribe the Vikes for chronic pain, fearing tolerance, dependence, even abuse. (The last cannot be fairly grouped in with the first two, but that’s another post.) It’s very, very easy for a patient taking narcotics on a regular basis to build up a tolerance, needing more and more to less and less effect, which can head to a very dangerous place very quickly. And this fear on behalf of doctors is eminently understandable.

But here’s my problem. I already take a shitload of other medications. And I’m close to maxed out on each of them. I could probably increase my dose of a couple meds modestly, but I have been very careful not to approach that max, fearing what I know is inevitable: some crisis, some downturn in health, when I need something more to help out, but find that I have already exhausted all my options.

And the non-pharmaceutical treatments? Yeah, look, I’ve been living with this condition for twenty-three years now. I know sleep hygiene intimately. I have to pay very close attention to how I sit, to what I wear, to how I move, to how I speak, to where I go, to what I carry — every second, of every day, because I have identified many of the things that make my pain burden worse. And I avoid those things, so that there’s less pain to treat in the first place.

I make sure to get enough physical activity, but not too much. And the right kind, for the right amount of time. I’ve learned to balance on the edge of the knife, constantly monitoring everything around me, everything I do, every tiny movement I make. It is a complex, nuanced, organic dance, on the tips of my toes while juggling all the hundreds of concerns every healthy person needs pay no mind to whatsoever. And if I slip, I have to know how to react swiftly to regain that balance right away — because it’s a hell of a job to build that balance from the ground up all over again.

I’m already doing just about everything I possibly can be doing. And it’s not enough to allow me some semblance of a normal life. And, ideals and expectations of normalcy be damned, I have to do more than that. I have to push forward. I have to keep going. I have a husband. We want a home and a family. And for the here and now, we have bills to pay. And my own emotional health demands I get-up-and-do. I go stir-crazy sitting in the house by myself every day. I want to go out and do something. And we aren’t privileged enough to be able to afford for that to be art classes and volunteering.

Because of all of this, I take Vicodin. Anybody who wants to fight with me at this point about it can go suck a rotting tree stump. It’s my fucking life, and I know what works for me. Piss off.

***

Two and a half months ago, now, I asked my doctor to increase my dose to 3/day. I did a lot of thinking and I really felt like that would be a sufficient number. Over the first couple weeks I settled into a schedule. One half pill when I woke up in the morning, and thereafter one half pill at every two-hour interval (conveniently coinciding with my breaks) until the work day was done. Considering I wouldn’t need as much on the weekends, that left me a bit of a buffer, just in case.

For the first month and a half, that worked great. I got my first refill right on schedule. I was proud of myself.

The last month, though, threw me a bit of a curve. I got several headaches, which meant increased use. (My headaches are such that I have no other way to address them — I have to take medicine, or it will get much, much worse.) And I was a little incautious about it. I was still adjusting to this new schedule — where I spend approximately four waking hours not in a work environment every weekday — and trying to make sure I would be able to sustain the work I was doing.

So, this week, a week before I was due for my next refill, I ended up a little short. Officially, I ran out of medicine halfway through yesterday. And I had to ask my supervisor if I could go home — for the rest of the week.

Fortunately, I am limited-term. I have no benefits. As such, there is no leave to deal with. But I skip work at the grace of my extremely understanding sup. I can’t abuse that privilege, or I may not have a job to come back to.

My doctor won’t let me refill a day early. I think he is becoming concerned. And, again, I undestand why. But.

I’m concerned myself. The past couple weeks, during which I saw this whole ordeal coming, I have been chewing on things. And I’ve decided not to pursue the highly-unlikely-to-happen-anyway permanent spot in this office. (Thank Rendell for that. They could lose five clerical employees and they’d be lucky to be allowed to hire back one.) So long as I stick the job out until its end, I have recall rights next fall. And I am moderately likely to be able to collect unemployment in the intervening months. It won’t be much, but it’s income.

More importantly, it’s income that affords me a chance to rest. I really don’t think I can handle doing this year-round. More and more, I am grateful that the hiring freeze came down. It took away my chances at a permanent state job. But it meant I jumped at the chance for this job when it came down the line. And all things said, this looks like a good deal for me. Work full time through the winter — rest in the spring and summer. And thinking long term… it’s the best chance I have to be able to keep working through pregnancy, childbirth, and early motherhood. It gives me a schedule. Life rarely works out on schedule, but I’d still have a chance. I wouldn’t have to be altogether out of work.

In the meantime, I am sitting at home and resting. I see my doctor tomorrow, and we will talk over my options. Because I want my life to be sustainable. This is the best chance I’ve ever had at that goal. And I don’t want to lose it.

Quick hit today, out of CAPAF’s report on how McCain’s health plan would affect women — well worth a read on its own — noted without further comment.

… Sen. McCain’s plan would encourage insurers to eliminate coverage of basic health services. These state requirements include:

* Twenty-nine statesƒƒ require cervical cancer and Human Papillomavirus screening Sixteen statesƒƒ require coverage of the HPV vaccine
* Thirty-one statesƒƒ require comprehensive drug benefit plans to include contraception
* Twenty-one statesƒƒ require coverage of maternity care
* Forty-nine statesƒƒ require breast reconstruction

Catblogging will return on Friday.

***

My body is mine.

There are seven tumors in my breasts. They are benign.

Two of them are palpable on the surface at one o’clock on my left breast. The size of ping pong balls.

I don’t bother to self-exam anymore. I know they’re there. I don’t want to be reminded.

***

You know the slur idiot-savant?

I know its counterpart. They are called parent-saints.

There is a reverence simply unparalleled in this society (with the possible exception of professional athletes) reserved for these people.

What earns them such a status? They didn’t terminate the pregnancy instantly upon learning of the disability.

There are no standards beyond that. I do not exaggerate. It does not matter how a parent treats a disabled child. They might even beat them, and their actions will be excused because after all: they are dealing with a heavy burden, so who are you to judge?

And that’s it. Upon knowledge that a child has a disability, that child is no longer a child. Sie becomes a burden. In familiar words: dead weight. Hir humanity is erased altogether. Sie has no curiosity, no sense of mystery or delight, no joy or sadness, no hurt or relief. Sie learns nothing, hir growth only physical. There is no sentience.

And so the relevant facts about hir have nothing to do with how hir environment affects hir. They have entirely to do with how sie affects her environment.

Which is why “choosing” to keep a disabled child is cast as such: an active choice. Because the default assumption is that such a child is not worth keeping.

After all, no one wants to be saddled a dead weight.

The attitude toward those sainted persons is summed up thusly: “I don’t know how they do it; I wouldn’t be able to. There has to be a special place in heaven reserved for them.”

It is such a drag on a person’s life to deal with any person with a disability, any person who does so must have supernatural patience. Love is not an issue, of course; love requires more than one person.

Parents of children with autism, muscular dystrophy, Down’s syndrome, and others. Anything that requires assistive equipment any more complicated than a pair of glasses, and anything that renders a child unable to speak clearly and “articulately” in their region’s preferred language. It is not limited to these, but these are conditions that earn a parent a sympathetic eye.

Do not leave these assumptions unquestioned. Sarah Palin’s refusal to terminate her Down’s child will be invoked as a shorthand for her upstanding moral character. Don’t buy it. She did not do so out of respect for the disabled as equal persons of equal worth. She did so out of allegiance to a philosophy that would deny women the ability to make their own choice to carry to term and keep a child with a disability or to safely terminate a pregnancy likely to result in disability. On that note, even those in feminist circles will frame Palin’s circumstance pretty much exclusively as a question of awoman’srighttochoose. DON’T BUY IT. For better or worse, with a few but only a few exceptions, the only time disability issues are picked up on mainstream feminism’s radar screen is when it involves a disabled woman who becomes pregnant in questionable circumstances. Sometimes it is a case of rape, and sometimes it is a case of upper-class white abled feminists plowing right past said woman’s agency to insist she must have been raped and/or coerced because of her “diminished mental capacity” (whether or not her disability is mental in nature, and even then, whether or not her “capacity” is “diminished,” and even then, whether it has any bearing whatsoever on her right to control the direction of her own life). DON’T BUY THAT EITHER. Women are damn well entitled to a well-defended and highly-accessible right to reproductive justice. That includes disabled women, and that includes any woman’s right to choose to continue or cease a pregnancy likely to result in a disabled child, depending on that woman’s own personal considerations. THAT IS NOT THE ONLY ISSUE AT STAKE, and GODDAMMIT, THAT IS NOT THE MOST IMPORTANT ISSUE! Why the HELL is a woman who does not faint at the idea of a disabled child someone who deserves a Goddamn crumb of praise?

It’s like people see the ideas “disabled child” “pregnancy” “conservative politician” together and obviously the issue at hand is every woman’s right to be free of a dependent with any sort of “defect.” Just like every woman’s right to kill a mosquito that lands on her arm.

Don’t let this opportunity pass. “Liberal” men and “feminist” women, consider your privileged asses called out. You should know better. And I, we, any person with a shred of human decency, should expect better of you.

***

I was enjoying some much needed heat therapy and electrical stim at therapy today, lying on my back on the you-call-this-padded? exam table in a room of about eight others, all of us closed off individually behind hospital curtains. Usually I am one of two or three people in the room, but I came at a busy time today and that was the last table.

My physical therapy office shares space with an acupuncture/holistic therapy group. And, um, they had a rather loud patient in the curtain-cube across from mine. She was screaming at length about how her doctor put her on some medication for an infection but she’s going to taper herself off of it, medication don’t do nuthin, etc. etc.

When I laughed and told my therapist — quietly — “I think most people would be scared when they saw my medicine spinner” — she reacted negatively to my twelve-pills-a-day and Ol’ Screamer caught wind and bellowed louder and more defensively. THATSTUFFISNOGOODFORYOUDON’TYOUKNOW and so on.

I’m kinna’ tired of it. My therapist has been amazing but I was let down a little by her reaction. Look, I know I pretty much funnel 75% of my paycheck to Big Pharma. I know most people are only accustomed to the occasional Z-Pack. But most people don’t live every day in my body. And damn it all, I know the difference between my-body-now and my-body-then. I took about a third of the medication I currently take a couple years ago, and I couldn’t work any more than 8-10 hours a week, tops. Then when I got on my current regimen, I was able to up that to 20-30 hours in a retail environment. And back when I took none of it? Oh yeah, that time in my life, you know, the time I almost failed out of high school and had to drop out of college (whether fifteen units or five) twice, all within a span of 18 months?

Yeahhh, that.

I’m sick of placating. So, to those people, kindly accept my Gayest Look.

This public service announcement was brought to you by … oh hell, I’m going to bed.

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 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.

What does it say about my experiences with the healthcare industry that when I see this:

Why do we want to know more about you?

In order to personalize the site to you, we need to know certain things about you. For instance:

• We need to know your age and gender to remind you of the check-ups you need.
• We’ve got a great pregnancy program so if you’re pregnant, tell us and we’ll help guide you through a healthy pregnancy.
• Your email and zip code helps validate that you signed up for the site and no one at our organization did it for you.
• And so on..

I read this:

Why do we want to know more about you?

In order to increase our profit margins, we need to know certain things about you. For instance:

• We need to know your age and gender so that we can “adjust” your premium and care accordingly.
• We’ve got a great pregnancy program so if you’re pregnant, tell us so that your employer has the option to discriminate against you based on it.
• Your email and zip code helps us earn money by selling it off to spammers, both “legitimate” and il-.
• And so on..

Cynical and unfair? Yes. But when you’ve lived the life I’ve lived, in the body I’ve lived, with the experiences I’ve lived, you’ll understand why I’m not so eager to provide my employers’ insurance “discount” company* with any of this information.

*I’m required to have this insurance in order to be listed on my husband’s insurance, and I have to have a denial from my employers’ insurance before his employers’ insurance will consider any claim at all. Which is kind of easy, considering the former doesn’t cover anything anyway. Throw soon-to-expire Medicare and on-going tertiary Medical Assistance for Workers with Disabilities into the mix, and I’ve got a headache-inducing full-time job on my hands juggling all of the above.

I’m adding a link to my blogroll, but I wanted to bring attention to it here. I’m sure this site has made its rounds in the past, but I think it’s an invaluable idea and I want as many women to see it as possible. That site is The Shape of a Mother—it shows what real mothers look like before, during and after pregnancy. It is definitely NSFW as they are not afraid to include nudity, but really, that’s the beauty of the site. You get to see all the blemishes and imperfections un-re-touched, but at the same time you see just how wondrous they are and how beautiful the human body is. Pass it on.