Nom Internets

(Long, very personal rant about disability below.)

In the U.S., there isn’t really one universal legal definition of “disabled.” There are various act and accommodations under which you can apply, but what really matters to me is the Americans With Disabilities Act (ADA), which has all that juicy language about non-discrimination in it.

Thing is, I can’t figure out who gets to say what a disability is.

Is it me? Do I get to point at the language of the ADA (a disability is something that “majorly impairs” my ability to perform essential life functions) and say, “I have a disability”? Is that good enough for an employer? Do they have to take my word for it? Or do I need a doctor behind me? Or what?

This disability is so fucking complicated because 29 days out of the month, I’m a perfectly able-bodied person. 1-2 days out of the month, I’m disabled across the full range of any disability checklist I’ve ever seen: can’t walk, often can’t verbally communicate, can’t think clearly enough to perform everyday tasks (mostly due to the, you know, blinding pain), can’t dress myself, can’t wash myself, can’t feed myself- I’m pretty much just able to lay there and, if I’m lucky, crawl to the bathroom every five hours.

And the whole thing is so deeply embroiled in shame, I’ve never mentioned my disability to an employer or a school. I just try to work as best I can around my numerous absences, and make up excuses. (Once, only once, was I forced to tell a manager about it, because it happened while I was on the floor, and I was stuck in the clothing section for twenty minutes, gripping my cart white-knuckled and realizing I couldn’t walk. She covered for me till I could make it out of the store and she respected my privacy, but it was still the worst work experience ever—especially because she kept cooing, “Feel better” and things like that, which made it feel like she was just shining a giant spotlight on me. And it also irrationally made me angry, because it wasn’t like I had a cold—I had a permanent medical condition that will continue to cause me pain, no matter what I do. “Feel better”?)

Thing is, I don’t think I can get away with the silence anymore. I’m in college, and last semester it almost cost me my G.P.A. I’m going to keep getting increasingly serious jobs, where random and frequent absences aren’t an option. I think I’m nearing the point in my life where I have to bite the bullet and try to assert this as a legal disability, or I’m not going to be able to move up into the types of careers and positions that I long for.

When I was twelve years old, I’d resigned myself pretty quickly to the “fact” that I would never really be able to do anything normal people would be able to do. I “knew” that I would never be able to play sports in high school, I “knew” that I would never be able to hold a serious career, I “knew” that I would never get As in college, I “knew” that even relationships would be difficult. And the majority of that mentality wasn’t about the disability itself—relatively minor, when you think about it—but about the certainty that society would make no accommodations for it. The certainty of the embarrassment, the horror, the complete social dismantlement of having to tell people about this in order to fish for exceptions. I just couldn’t handle the thought. I still can’t handle the thought.

It’s not like I’m ashamed of my period in any other context. I’m always spouting feminist this and feminist that about society’s attitudes toward it. But when it comes to menstruation in the context of disability? I’ve got so much deeply ingrained shit that I can’t seem to claw my way out of it.

Maybe it’s because all the language I’ve ever been fed about period acceptance is all about how “natural” it is, and how it’s “just another part of life”, and “it happens to everyone”, and all that.

But that’s not true for me.

What happens to me is definitely not natural—it’s a dysfunction.

It’s not “just another part of life”—it’s a wrecking one that gets in the way of everything. In the “I don’t know if I can make it to the phone” way, not in the “I can’t wear white pants” way that the commercials chirp about.

And it sure as hell does not “happen to everyone.”

When it first started happening to me—that is, when I was 11 years old—I of course immediately tried to tell people. I’d grown up being told nice, calm facts about menstruation, and the one thing that everyone kept saying was, “I know it’ll seem like your life won’t be the same, but once you get used to it, you’ll realize that you can do everything with your period that you did without it.” It’s the line for preparing young female-bodied people for their transitions.

So when that turned out to be a lie, I was practically screaming it in the streets. I was the first person at my entire school to start their period (as far as I knew, but I’ll still put money on it), and I immediately went to the other girls and said, “Dude, they lied to us. The pain is more than you can even imagine. It’s the worst thing you’ll ever feel.” They recoiled from me, called me a liar, said that their mothers weren’t liars, and so forth. It was the Big Divide. Suddenly, they didn’t want to include me anymore. It seemed that before I’d started, all we’d ever talked about was periods—but now that I came in with something negative to report, they didn’t want to hear about it.

Soon after, they all started theirs, and pointedly came up to me to tell me what a liar I’d been—how it doesn’t hurt, how I’m crazy, exaggerating, whiny, etc.

When I tried to tell grown-ups about it, the result wasn’t much better.

“Oh, yeah, for some girls it can hurt—but it’s okay, just put a hot water bottle on it. You’ll be fine.”

“No, you don’t understand. It really, really hurts.”

“Hey. Look around you. Every single woman in this room has learned to deal with it; you’ll learn to deal with it to. You just have to suck it up. Take some advil.”

Basically, I was talking to people who only had normal cramps—not the black-out, full body assault that had me vomiting on the floor in a wretched fever-dream every month. But this was all so subjective, I didn’t know that. I thought that maybe I just was unable to deal. That maybe I was weak somehow, or crazy, or whatever was being insinuated in my direction.

It didn’t help that the only message I was getting from the male quarter, both my age and grown-ups, was how menstruation caused insanity. When I entered the high school age, that message transformed into, “Be a man.” Essentially, that women had no excuse to not have the same full, month-long functionality as men—because we wanted to be “equals”, right? Then we couldn’t whine or complain about it. We had to “earn” that equalness by dealing with our periods in silence and not letting it show. My choir teacher went as far as to give us this speech in a pretty literal, word-for-word fashion.

I told doctors a couple of times, more incidentally than anything else. Check-list types of questions. I was too embarrassed to ask for a doctor’s appointment specifically on this issue, since I had to do everything through my mother, and we were not close.

“And have you started your periods?”

“Yes.”

“Are they regular?”

“Yes—but they’re really painful.”

“Okay.”

“…Really, really, horribly painful.”

“Okay. And what about your sleep schedule? Do find it difficult to fall asleep or to stay asleep?”

This was before the 1-10 pain scale was invented/in popular use. I wish I’d been able to go into a doctor’s office and point at the 10 and say, “THERE. THAT.”

Point is, I tried to communicate at first, but the return massage was so loud and clear:

SHUT UP.

So, I did.

And I was never able to un-shut up.

It seems absurd now that I’m writing it out that this is something that I’ve been paralyzed with fear of talking about for so many years, but it’s one thing to post it on a blog under a pseudonym, and another to stand tall in front of a (possibly male) employer and assert, “I need exceptions made for me because of this disability. It’s a genuine disability, it’s not just me ‘not dealing’ well enough with a common problem.”

Thing is, from what I read, this is really fucking common. I read somewhere online that 10% of women who suffer severe dysmenorrhea. Ten percent. I read somewhere else that 1-2% of women describe their periods as “debilitating”. Now I don’t know where that data came from, but if that’s even close to accurate, then that’s a shit-ton of women who are struggling through this society with a fucking severe impairment.

So why don’t I ever hear about this? I mean, I hear about it in closed feminist communities, but I don’t hear about it out and about in society.

Is it because so many of those women, like me, have felt bolted into silence all their lives?

Anyway.

I’m finally going to do the research on this. And I’m finally going to do the only rational thing I can do, which is to go into future engagements asserting that I have a disability and need exceptions made. It’s the only way I can imagine ever holding a job of the caliber that I long for—the types of jobs where you can’t call in sick every month. And right now, it’s looking like the only way to save my grades, because even though I’m doing all the work, the timing has been poor this semester and I’ve already missed three classes.

Just a couple of quick notes: if you are disabled in some way, I’m sorry if my sense of shame feels like a projection. No one should ever be ashamed of a disability—but it’s easier to say that of others than to say it of oneself.

Also, if you have “helpful tips” about my condition—please don’t. I do finally have a wonderful doctor now, and everything that can be done is being done or has been done. Believe me. There is NO remedy, home-made or prescription, that I have not tried. No lifestyle change. (Heck, I was vegan for two years.) Yes, I’ve even tried illegal drugs. Trust me. I have run the FULL gamut on this. “Helpful tips” stopped being helpful a while ago and are now simply frustrating and even hurtful. Thank you for understanding.

And thank you for letting me vent this here. I know this isn’t really a “personal” blog most of the time, which is why I put this stuff under cuts. But it’s been helpful to “put this out there” in a sense—to be public about it, even in a minor way, as a sort of precursor to taking more serious steps toward “coming out of the closet” with this. Thank you.