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.