One Million Pissed Off Women Not Safe Space For Differently Abled

Until Tuesday, I was a member of One Million Pissed Off Women, a anti-misogyny, anti-homophobia, and anti-racism group on Facebook. I thought it was a really great group of women, and the page posts a lot of interesting news links and activism opportunities.

Well.

In reaction to North Carolina’s passage of Amendment One, that will enshrine homophobia into the state’s constitution, one of the admins posted a status using an ableist slur referring to the people who voted for the measure. Many of us took exception to this, because hello, comparing people with developmental disabilities to homophobic bigots is not cool.

The admin reacted badly, to say the least, as did many members. The usual defenses were used, “well, they are stupid,” “I’m not discriminating!” “it doesn’t mean [the general accepted definition of the slur], it means this!” The thread quickly degenerated. The admin posted another status, trying to justify her ableism, and frame those of us angry at her bigotry as meanies out to spoil her fun. Needless to say, that thread degenerated quickly as well.

Soon, I no longer recognized the feminist page that I joined months ago. It resembled more a hate-fest on a tea party page. Seriously, it was nasty. Use your own judgment before you click the links–many of the commenters were vile. After posting several comments, I decided to leave the group.

I wasn’t the only one. Others posted of their intention to leave the group.

One poster commented on the page’s wall, saying:

“”Racism, sexism and homophobia are not permitted in this area.” …But saying [slur redacted]–totally acceptable!”

The admin responded thusly: “yep!”

Because of the nature of Facebook, the ugliness will be buried in the group’s timeline…until the next time someone throws out an ableist slur, of course. But differently abled feminists (and decent people in general) should know:

One Million Pissed Off Women is not a welcoming space for us.

 

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Shit TAB Say: Part Two

Yesterday, someone I know was angry at his significant other because she had let him sleep in. He felt like half the day was gone! All that time, wasted! He slept only two hours later than he would have liked, but two hours was too much for him.

Welcome to my world, I said.

Sleep is vital for our health–moreso, for differently abled people with conditions like, say, epilepsy. Sleep deprivation can cause of number of problems: lack of energy, lack of focus, slower reaction time, and the longer we go without sleep, the worse the effects become. For epileptics, the time we’re able to go without sleep is shortened, the effects come on much quicker. There is also an additional consequence of sleep deprivation for epileptics: seizures, partials and grand mals.

When I refrain from setting an alarm, it is pretty much guaranteed that I will sleep much later than I want. If I’ve incurred a sleep debt, alarms wouldn’t keep me from continuing to sleep, either. If my alarm goes off before my body is rested, I cannot get out of bed. I’m too exhausted to move.

That’s a lot of “time wasted.” That’s a lot of days “half gone.”

Much less time to do what I want and need to do.

Thoughtless comments.

It’s funny. TAB have much more time to consider the perspectives and experiences of others. And yet. It occurs to me that TAB are wasting a lot more time than I am.

Take Medication, Or Else.

Last night I discovered a woman of my acquaintance had been arrested under a mental inquest warrant–someone close to her (we know who it is, but to preserve this woman’s privacy, I’m concealing certain details to prevent her from being identified from this post) had gone to the police and claimed she had a mental disorder and was not taking medication for it.

From what I know, this warrant is a means to force one’s relatives to get treatment for mental disorders. You’d suppose that this would require a lot of proof, both of the diagnosis, refusal of treatment, and a danger to someone, right? Apparently not. The woman I referenced above is completely able-bodied, and has not threatened or posed a danger to anyone–but that did not prevent Louisville Metro Police from sending two squad cars to this woman’s home, arresting her, and detaining her for several hours before discovering–whoops!–she had no mental disorder.

So, apparently the word of one person is enough to get someone locked up for presumably refusing to take medication. I received a text message today, the sender said:

“Still I could see it if they claimed she was psycho or dangerous, but _____? Please!”

I responded thusly:

“I can’t. Everyone has the right to choose to take medication or not. That right is meaningless if people who have conditions for which medications are available aren’t allowed to refuse.”

I cannot describe how angry it makes me to see such blatant evidence of disregard for the rights and humanity of those of us who are differently abled–and even those who are thought to be differently abled. To know that the entire time I refused medication, I was one phone call away from being arrested, thrown in jail, committed, and forced to take medication frightens and enrages me.

Unfortunately, I cannot find any information via Google–as in, the requirements to obtain a mental inquest warrant, what happens to the person the warrant was gotten against, or if it can be challenged. This information is something that I, and the PWD community in general, need to have. But ultimately, this is something that should. not. happen. No one has the right to force medication on another. Everyone has the right to refuse medication, to refuse treatment.

Why I Didn’t Take Them: Epilepsy and Medication

I’ve mentioned before that there was a period in my life where I refused to take medication to treat my epilepsy. In fact, I refused to take any kind of drug whatsoever. I’ve hinted that there was a reason for that, and some of you may have picked up that the reason was very personal and painful for me to discuss.

I think that I’m ready to share that story.

Several years ago, my parents were going through a prolonged, bitter, difficult divorce, and it impacted me in a very big way. I felt reduced to nothing but a piece of property–something to “get custody of” or a prize to win and lord over the losing parent. As the oldest child, I was the confidant of both parents and my younger brother. I tried to be the peacemaker. I tried to enlist the help of adults close to my family. I tried to shield my brother from the worst of my parents’ fighting, and my own hurt.

In the midst of all of that, I was a teenager trying to figure out who she was, who she wanted to be, and what she wanted out of life.

Because I was dealing with a lot of grown-up issues, my friends didn’t know how to respond or deal with it, much less be there for me, so they backed off. The adults in my life were simply taking sides, and there wasn’t much (proper) attention paid to my brother and I. There was a lot of posturing, of course, as there is in any divorce proceeding where “minor children” are involved.

Civil Air Patrol was my only refuge. I kept my family problems carefully hidden there. I loved CAP, you see, and I didn’t want the one thing that I had that was solely mine, getting infected with my problems. It was the only place where I was happy. But after a couple of years, it wasn’t enough. I had a friend in CAP that I had confided in, and he saw where I was heading. He did his best–but a fifteen year old can only do so much.

<trigger warning>

I was depressed. I was lonely. I couldn’t be strong enough anymore for everyone: for my father, for my brother, for me, (at this point I was not speaking to my mother, or even seeing her.) and for everyone else that needed to vent. So I stopped being strong for myself.

And I started spiraling further and further into depression and misery. I kept it to myself–I’d only allow myself to be weak at night, in the privacy of my room, in the dark. I wanted to die. First I cut up my arm. Night after night, I’d cut and bleed, but I didn’t die. Next I tried to starve myself, bulimia-style, because I still couldn’t have anyone know that I was suffering. I had to stay strong for my family. I shed pounds. More boys started hitting on me. I snuck off to the bathroom at school to purge my lunch. I’d get up from the family dinner every night and headed straight for the bathroom. In my fog of depression, I thought I was being slick about it, but my younger brother knew, as I discovered years later.

At some point, I decided it wasn’t happening fast enough, so one night I took a bottle of acetaminophen–a hundred pills–with me to bed. I managed 43 before I got full from the water and drowsy, and I laid down on my bed. But I didn’t die. I woke up a few hours later and spewed more vomit than I thought a stomach could hold, and hurled it much farther than I thought possible, too. It covered two walls and my comforter. I was too weak to do much but take the comforter off the bed and lay down again.

A couple hours later, Dad came in to wake me for school. He thought I had a stomach virus, and no way was I going to disabuse him of the notion. He gathered up my comforter and wiped the walls and declared I wasn’t going to school that day. My existence for the next two days consisted solely of my vomiting in between long periods of unconsciousness. I was too weak to do much but pull myself along on my belly to the bathroom, hoping I could get there in time. When my brother got home from school that day, he brought me a grocery bag and hung it on my bed post, so I need only roll over to expel my stomach contents before passing out again. I’m fairly certain it was he who changed it for me while I slept.

The third day, Dad declared me well enough to go back to school. I couldn’t eat, and I was still very weak, but I wasn’t vomiting anymore, so I went. Eventually, I had to eat. There lay a dilemma. Was I going to purge? After those three days of hell, I had no interest in vomiting ever again. My throat was raw from all the stomach acid. My stomach churned at the memory of the sensation of vomiting. I couldn’t do it. There ended my bulimia.

Moreover, I couldn’t hear the sound of a pill bottle rattling without getting extremely nauseous. I’d feel sick if I even imagined the texture of a pill. There was no way I was ever going to be able to take pills ever again.

I stuck to it, too. It was years before I could hear the rattle of a shaken pill bottle and not feel sick. I still cannot take anything but capsules–I had taken pressed pills all those years ago, and if I took one now, it would not go down my throat without a hard fight. I have had terrible menstrual cramps, and I would deal with that pain because the alternative was too sickening to bear.

Then my epilepsy flared up. It was thought that I had had juvenile epilepsy–the type that you have as a child but you grow out of. I refused medication. As I’ve shared before, I got a lot of shit for it. But I didn’t budge. The sensory triggers were still too much. My physical reactions were still too much. I couldn’t. I wouldn’t. And it was my choice.

Well, it should have been, anyway.

I shared in a previous post, how that choice was taken away from me:

“My professors were outraged that I hadn’t told them while on a study abroad trip. So much so, in fact, that when I had one, they threatened to send me home if I didn’t take medication. I had very little choice. So I did. I took medication that had just been released in Europe, that hadn’t even been considered by the FDA in America, which I knew nothing about. When I forgot to bring the medication on a weekend trip, I was lectured, reduced to tears, forced to remain on the bus while the rest of my classmates toured a chateau, and forced to take a Xanax. I wouldn’t be allowed to join our group on our next stop, Auschwitz, if I didn’t take the Xanax. What choice did I have? None. So I did. I took a drug that I didn’t, and still don’t, even know the name of. I took a pill that I knew would do nothing for me because my professor thought it might, and that was all that mattered. My knowledge of my own disorder, my own body, didn’t matter.

When I got home from the trip, and that new drug ran out, I got on medication. Once I started, I couldn’t easily stop—my body adjusting to the lack of drugs would mean more partials and more seizures while the drug was purged from my body. I’ve been on medication ever since. It’s been a year and a half since my person was disregarded, my choice disrespected, and my agency taken from me. Everyone is happy I’m taking medication. They’re so pleased that I got a little keychain pillholder for emergencies. They’re satisfied that I’m being the Responsible Broken Body. Everyone is happy, but me.”

I was thousands of miles away from home. My professors dredged up this horrible experience, from one of the darkest periods of my life, to demean and belittle me for a choice they thought was trivial, though they saw my decision to conceal it from them as a great sin, a terrible betrayal. My right to silence, to privacy, to protect myself from triggers was nothing. They never asked. I might have told them. I liked and respected both of them. I might have told them, had they respected me. Had they only asked.

I had my reasons for refusing to take drugs. Damn good reasons. But the reasons don’t matter–the choice does. I’m sharing my story because it illuminates very nicely why “such a little thing,” according to the abled, is actually a big thing. A pill on a countertop, sitting by itself, isn’t a big deal. But put a PWD and an abled-bodied person with that pill, with the abled-bodied pushing the pill on us, and it becomes a big deal.

We have our reasons for the choices we make, and it is our place, not the able-bodied, to decide them. We know our bodies. We know our conditions. We know our past and the experiences that have influenced our choices.

You don’t.

Traveling While Differently-Abled

As I write this I’m in the backseat of a friend’s SUV, somewhere on the coast of California. I love traveling. I love that feeling of “Wow. I’m in [place] right now” and looking at the mountains, the ocean, the restaurants, and man-made sights. Traveling is a huge privilege, class-wise and abled-bodied wise. The extra things the differently abled have to consider living day-to-day obviously extends to travel as well, though, persons with abled-bodied don’t even consider it.

Plenty of medication has to be packed, the traveling/touring schedule has to be accommodated to fit certain needs, and environmental factors have to be considered. If your traveling partners are all abled-bodied, there’s also the burden of their perceived burden of having to accommodate your needs. All of these things take the whimsical, carefree nature out of traveling. They add stress.

Part of the fun of traveling is seeing new places, but for the differently-abled, that has a downside. At home, we know which places are friendly to our needs, and which places are not. Our doctors are close at hand, as are our pharmacies. Our living spaces at home are already suited to our needs. We have a support system of family, friends, loved ones at home. None of this is so when you go out of town.

When traveling with companions that are all visibly different from you, locals (or other travelers) want to know why. People like to hear the traveler’s story—where you’re from and why you’re there. When you’re visibly different (in my case the only civilian) they want to know why you’re different (why I’m not in the military). And it hurts. We are constantly reminded of our difference, and these questions are only another slap in the face. These questioners are genuinely curious, but that doesn’t change the feeling one gets when you have to endure these questions. I was already very acutely aware of my civilian status. When my traveling companions are in uniform it is all the more so.

See, I desperately wanted to be in the military. My dream, from the age of thirteen, was to join the Air Force and become a pilot. I wanted to wear the uniform. I wanted to serve my country. I joined Civil Air Patrol at the age of fourteen to better my chances, and I loved it. I loved the military culture. I loved how the uniform made me feel. I love the feeling of serving. I loved that respect (that a woman, and a differently-abled one, gets all too rarely). The uniform masked my womanness, the things that signaled my second-class status, and my accomplishments were born right on my uniform, unable to be disputed by others. My accomplishments were the first thing others saw.

So when I was asked about my difference, it was a crushing blow. I had to, again, for the thousandth time, decide if I was going to be “polite” aka a dutiful broken body and disclose my disability, or if I was going to be “rude,” and not satisfy the local’s curiosity, and therefore be an uppity broken body instead. Making that decision at home, in my comfort zone, is one thing. Making it in a new place, where I am merely a visitor and am completely unfamiliar with, is entirely another. It reminded me that my body can’t do the things I want to do, and that my dream is forever taken from me. They tell you as a child you can be anything you want to be, do anything you want to do. For the differently-abled, our disability tells us, each minute of every day: NO YOU CAN’T.

I’m having a wonderful time. I celebrated my birthday here yesterday, and I did not regret being away from home. But for me, and others like me, there’s always something lurking at the back of the mind.

Special Rights in a “Normal” world

During a conversation with a friend last night, my epilepsy came up. We were talking about housing, and something my friend said really struck me.

“You know, you probably could have gotten private [on-campus] housing because of your epilepsy.”

I was dumbfounded for a moment, stumbling over my words. While I didn’t get angry or upset, those words resonated, and they bothered me. My friend had only the best intentions. I only replied that I hadn’t been comfortable disclosing my medical issue, and that it’s better that I live with someone anyway.

But that’s not the point. I had never, ever thought about using my epilepsy for personal gain, and basically, that’s what that would be. I have no need of having a private room.

That conversation was my first experience with someone focusing on my epilepsy as a means for gain or personal benefit. Differently-abled people experience this all the time from abled individuals. Accommodations for us are often labeled “special rights.” See, we get to sit down all day! We get deadlines extended! Private housing! Aren’t all these things great?

No.

“Special rights” is a term I view with contempt. It’s a malicious, inconsiderate, ignorant, and hateful term. We call ourselves differently-abled in a world that views us as other. We call ourselves differently abled because the world views us as other. We’re some kind of anomaly. We’re not normal. The world isn’t constructed with us in mind. Hence, the need for “special accommodations” for us. If this world was truly one that accepted people in all their glorious diversity, “normal” would be an extinct, useless word, and accommodations wouldn’t need to be made. Our cities, homes, and schools would be constructed with everyone in mind. As it is, these places are constructed with only the “normal” in mind, and if we’re lucky, the rest of us are tossed a breadcrumb or two.

That is not to say, that everyone who says things like this are hateful. My friend is not hateful. He is equally contemptuous of the term “special rights.” But he is privileged in a few ways, and one of them is his ablism. Many incidents like mine are due to ignorance. However, this is not to say that their ignorance is acceptable. Everyone should make an effort to understand, or at least empathize, with others who experience the world differently. This makes us better people, and it slowly improves the lives of Different People.

All of this to say, that to me, epilepsy is normal. I live my life around my epilepsy. I have no other choice. It is not “special” and it is not something I have for use to my benefit. It simply is.

I will take medication twice daily for the rest of my life. I will still have partial and grand mal seizures. Stress and sleep deprivation are triggers, and I cannot avoid those. Sometimes I have to stop and sleep. Sometimes that means I can’t meet deadlines, or fulfill commitments. That’s not a special right. That’s something I have to do to ensure my safety.

It’s not a special right. It simply is.

Student Government and Disability Access

I’m excited to say that Colton Jessie and Kendrick Bryan have won the Student Government Association election for President and Executive Vice-President respectively, at WKU.  Kendrick was running for re-election, and Colton was running for his first term. What has me so excited about this is that one of the issues that Colton ran on was increasing disability access on campus (not to mention he supports domestic partnership benefits for WKU employees, woot!). Like I pointed out in this post, Western’s campus is pretty inaccessible, because of its location on a huge hill, and because many buildings weren’t constructed with the differently-abled in mind.

Western’s student government boasts of being the most active in the state—but it has a lot of improving to do.  1,209 votes were cast in this election, and considering we have many, many more students than this (about 18,000 when you take our satellite campuses into consideration), that’s not a lot. Student government has a similar reputation as politics and government in general—that it’s a useless body, with little accomplishment, and its members involved solely for personal interest. SGA’s budget is significant—over $100k. Most of it goes to student organizations on campus, to fund whatever it is those organizations are doing, with a limit of $500 each. But there’s a lot of money that can be spent however the student Senate wants—including adding ramps, curb cuts, or whatever.

I suspect, however, that most of their effort in regards to this issue will be meeting with university officials, and passing resolutions. I was in SGA for two years, and served in several different positions, and SGA has a lot of influence. Just bringing this issue up with administrators can have a huge impact. SGA can also work with University Senate—the faculty’s version of SGA—to bring up issues and get things done. But of course speaking with officials shouldn’t be the only things done–talking to differently abled students about their experiences on campus, bringing awareness to this issue, and lobbying Frankfort for more aid should also be priorities.

I spoke with Colton during the election, after he came to speak at the Student Identity Outreach meeting on campus, and he’s very eager to work on this issue. We’re supposed to meet soon, to get the ball rolling. Updates will be posted as soon as any developments occur.