Ableist Gif! They’re like, so original and shit.

I came across this little gif in my feed today.

It irritated the fuck out of me. My response?

“Yeah, back in the day they used to think epilepsy was demonic possession, too.”

I cannot tell you how much that “Back in my day…” crap makes me twitch. Throw in some ableism, and I’m ready to go ALL CAPS on my facebook feed.

The Right to Refuse Treatment

Because of my epilepsy, I have had quite a few run-ins with EMS and ER staff in various cities, states, and countries.

It is my policy to refuse treatment if someone calls an ambulance while I’m having a seizure. I have told family, friends, and partners to refrain from calling an ambulance if I have a seizure, unless I’m severely injured.

I’ve had to justify this decision to the vast majority of those I have conveyed my wishes to.

“There’s no point. If I’m not gushing blood, there is no reason for me to go to the hospital. I have epilepsy. I know this. What is the point of getting dragged to the hospital, getting MRIs, EEGs, and a bunch of other tests done–only for them to tell me I have epilepsy? That’s a bunch of debt for nothing.”

Once I lay it out like that, most reasonable people agree. Whether or not they’ll actually abide by my wishes is a different story.

It’s impossible to avoid ambulances, however. I go out, like people do, and Random Dude on the street knows nothing about my medical history or my wishes.

So, I have a seizure. I wake up, EMTs are there. Even in my post-seizure fog, I can tell them that I have epilepsy, and that I’m refusing treatment.

Here’s my problem.

EMTs do not like to be told no.

Medical personnel operate under two doctrines: informed consent, and implied consent. In my situation, medical personnel approach me under implied consent–meaning, that patients who are either unconscious, or “mentally incapacitated” would “reasonably” want to be treated. Patients in an incapacitated state are assumed to have given consent to be treated.

When EMTs first meet me, I’m either unconscious, or in the grey area of being conscious, but incapacitated. Or so they assume.

It’s a very short time after I regain consciousness that I regain my mental faculties. I have epilepsy–I’ve dealt with unconsciousness and seizures many times. I know what that post-seizure state is like. I know how to care for myself, post-seizure. I know what to expect.

I also know what to expect from EMTs. When I regain consciousness, the EMT will be helpful, sympathetic, and will do their best to care for me. The moment I state that I am refusing treatment, it all changes.

The EMT(s) will get hostile and defensive. No, they tell me, I need treatment. I need to come with them. They need to check me out, to run tests. No, I insist. I’m fine. I don’t need treatment. Next, they belittle me. I don’t know what I’m talking about. I don’t know what’s best for me. I could have severe injuries. I couldn’t possibly know if I’m injured or not. I need to come with them.

I persist, however, and eventually they relent. They make it very clear they disapprove, and act accordingly every step of the way.

This is how it has always gone.

Until last week.

Last week, I had a car accident. My epilepsy was not the cause. I did a quick self-evaluation at the scene, and I determined that I didn’t have any injuries to worry about—certainly nothing to merit the large bills that a hospital trip would result in. I told the responding officers that I didn’t need an ambulance. They disagreed. When the EMTs arrived, I answered their questions, and told them that I would be refusing treatment.

Not only did they get hostile and defensive, but they refused to accept my refusal. “You have no choice,” they told me, “You’re coming with us whether you want to or not. The only choice you have is what hospital we take you to.”

Hmm. Not mentally capable of choosing to refuse treatment, but capable enough to decide which hospital to go to. Interesting. Okay, then.

“Well, I’m not going to any religious hospital, I can tell you that right now.”

The EMT was taken aback. Once he recovered, he listed my remaining options. I chose the hospital my physician is affiliated with.

I’m rather forceful and opinionated for someone incapable of making my own medical decisions, aren’t I? I hope the EMT received the message sent in my glare.

Interestingly enough, I did not receive the treatment the EMTs insisted I needed. I wasn’t immobilized, like car accident victims are supposed to be. I wasn’t given an IV, like seizure victims usually are. They took my blood pressure and my heart rate. That was it.

It wasn’t about getting me medical treatment they thought I needed. This was a power play. As a patient, I was supposed to acquiesce. I was supposed to submit to their judgment. When I didn’t, they took it as a challenge to their authority–and they abused that authority.

ADA Suits Crippling Your Business? Let’s Repeal the Law!

I guess it never occurred to Dianne Feinstein or these mysterious small businesses to comply with state and federal law in the first place.

But for real, ya’ll. It’s not that we want equal access or anything. We just want to sue you for money! That’s why we’re disabled, after all.

We’re special, dammit! Cater to our special needs or PAY.

As Liss from Shakesville would say, it was either this, or a 2,000 words screed riddled with profanity.

Shit TAB People Say

“X disability is worse than yours.”

Really? And you know this…how?

Let me tell you something: Don’t try to measure the “badness” of shit you have never experienced. Don’t try to tell me how my own experiences measure up against someone else’s experience.

Contrary to what you might think, those of us with disabilites don’t sit around and compare our struggles in some sort of pissing contest.

Don’t you dare try to impose that on us.

We have enough to deal with. We get enough crap from TABs already.

I couldn’t even try to compare my epilepsy with someone else’s disability. Not even if they also had epilepsy-and a friend of mine does. Our experiences are different. Our treatments are different. It has impacted our lives in different ways. None of those differences mean that she has it worse than I do, or that I have it worse than she does.

We’ve bonded because of our mutual understanding, something that an able-bodied person could never have.

You can tell us nothing.

Check your privilege sometime, before I seize all over you.

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.

Entitlement of the Able-Bodied

Today, my brother and I were talking about my recent post. His response to it was basically “Yeah, but some people need to know.”

Hmm.

Do they?

And who is they, exactly?

Do I have a legal obligation to share private medical information? No. Could it be a moral one? I don’t think so.

While others may be frightened or feel helpless while watching me actually be unconscious and helpless on the floor–I don’t believe I’m under a moral obligation to assuage an aspect of fear that others may feel if I have a seizure in their presence.

You see, no matter whether or not bystanders know I have epilepsy, I’m told it is incredibly scary to watch. The unknown is frightening, yes, but being helpless to prevent or stop a seizure is also frightening.

And, um, people? I’m the one that actually is helpless while having a seizure. You may feel helpless, but you are still conscious and have complete control over your body, yes?

Right. So forgive me if I’m not exactly sympathetic to your plight.

Despite that fact, I have on numerous occasions, been subjected to the indignation of others who felt they had a right to know. Not only that, but my failure to disclose my private medical information was a failing of mine, a betrayal of the highest order. And they. were. pissed.

I’ve been lectured, berated, abandoned while semi-conscious, told I’m no longer welcome in the home of a friend, threatened, and more.

That does not endear me to trust you with knowledge of my disability.

You are not entitled to anything. I am not morally, legally, or otherwise obligated to tell any one person a damn thing about me.

The Balancing Act of Education and Privacy

Every time I find myself in a new environment or with a new group of people, I have a decision to make: to share, or not?

Because of the nature of The Beast, I cannot simply wait until my epilepsy shows itself to tell others. If I have a grand mal, I’m completely incapacitated, and left to the mercy of those that may or may not know what to do. Later, I’ll probably be treated to the indignation of those I hadn’t told, because of course I should have revealed my medical history immediately, to everyone.

However, I have just as much a right to privacy as anyone else. And sometimes? The mental effort it takes to open my entire health history up for all to scrutinize as well as to educate the ignorant about my epilepsy is just not worth it. Sometimes I just want to be a person that has things she keeps to herself. Sometimes I don’t feel like going into lengthy explanations of what epilepsy is. Sometimes I don’t want to share my humiliating experiences. Sometimes I don’t want to be vulnerable.

Sometimes, I just want to be.

A privilege the abled enjoy is the fact that they don’t have to choose to be, they just are.

That’s the decision I have to make, with every new environment or group I choose to enter: to be, or to be the educator, the vulnerable, the open book?

I’ve made that decision countless of times already in my life, and I’ll make it countless more. As I said earlier, I cannot simply choose to wait until my epilepsy shows itself to introduce it. I also, often, cannot wait until I trust the person and feel comfortable revealing this thing about myself, because it’s quite possible my epilepsy will manifest itself in a very public, very violent way before I feel that trust.

So I must weigh the risk of complete vulnerability and helplessness with someone completely ignorant, with the vulnerability it takes to educate, with my desire to simply exist, to live my life as a woman whose medical history is none of your business, thank you.

That I have the ability to make that choice is in itself a privilege. Much of the time, my disability is invisible. That I can feign normalcy, that there are times that I forget, is a privilege.

But even so.

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.

Manboobz Writer Shows His Ass

David Futrelle is having a bit of trouble understanding ableism, language, and the concept of “a thousand cuts.” Founder of Manboobz, he is currently guest-posting on Feministe, and in his last two posts, he uses ableist language. We all slip up occasionally, right? We fuck up, apologize, edit the post, and move on. Not this guy.

I’m starting to wonder if the MRAs that flood his blog are starting to have a negative influence on him, because the way he has reacted is abhorrent. You wouldn’t know, once you got past a certain point in the comments section, that you were even on a feminist blog at all.

He reacts in a very typical MRAish fashion. In one comment (#34) he pulls the whip-out-the-dictionary-to-prove-I’m-smarter-than-you trick, accuses commenters (fellow feminists! WTF!) of being whiny, oversensitive, and of being unable to function in the world, accuses commenters of being bad feminists for pushing others “who are not in fact ableist” away, and being counterproductive. He also very much takes offense (as in, hand on heart indignation) at being “equated” to misogynists. Because ableism isn’t as bad. Or something.

Despite that bit of trolling, many commenters patiently explain to him why ableist language is wrong, that Feministe is a safe space, why his reaction is inappropriate, etc. Unfortunately, they get nowhere, trolls jump out the woodwork, and David jumps at the opportunity to “prove” Feministe’s regulars wrong.

He whips out the “I have a FEMALE friend who is a FEMINIST (!!!) and she AGREES with me. So there. I win.” and “SEE those PWD that agree with ME?!?! So you’re WRONG and I’m RIGHT! Ha!” Right. Because all feminists and PWD are supposed to be a monolith, and if he can find one or two that agree with him, the rest of us are wrong, and should…shut up?

Another galling thing here is that he’s not even doing this on his own fucking blog. He’s a guest poster, a guest, and he’s acting like a jerk.

Then there’s this comment, by Florence, at #42:

“The constant chorus about ableist language is distracting and frustrating. As a person with several disabilities I think it’s condescending and ridiculous to problematize language for the purpose of blog-gotchas.

Language has history. A lot of words that we use on the regular have extremely socially colorful roots. To insist that we change or constantly mitigate the use of standard English to participate in discussion demonstrates a lack of understanding of how language spreads, works, and grows, and encourages us to police and silence one another despite clear authorial intent and meaning, which is in itself an appropriation of power and privilege.”

Ahem. As a woman with a disability, who has studied language, this is ridiculous. If you’re a PWD that has no problem with ableist language, that’s cool. Go on with your bad self. But some of us do have a problem with it. It’s not your place to tell me that I shouldn’t have a problem with ableist language. I have to wonder where this commenter gets the idea that we PWD that take issue with problematic language are simply being malicious and engaging in “blog gotchas.” (What the hell are those, anyway? Some type of word-tag?)

On language: this commenter clearly has no idea how “language spreads, works, and grows.” Language evolves, and is constantly evolving. Words change meaning over time. Words die and words are created. Eliminating ableist language is a form of activism–you cut out bigotry in our very language, you cut it out of society–a deliberate effort to evolve language, if you will. But, this commenter has no issue with ableist terms (do they take issue with sexist and racist language, or is that okay, too?) so it is not surprising that they know little about the importance of language, and it being the very foundation of society.

I hope that Feministe will kick this rude and demeaning guest to the curb, and flush the comments of that post quickly of the trolling and ableism.