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.

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.

 

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 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.

Pushing the Limits

As I’ve mentioned, I’ve been making several changes in my life recently. I’ve been doing well. I tried my first casserole last weekend, and did quite well–I’ve eaten it every night for dinner and I’m nowhere near tired of it. Of course, I added about two pounds more cheese than the recipe calls for. (Have I mentioned that I love cheese? I love cheese.)

I’ve been going to the gym, every night after I get off of work. And, of course, I’ve been making an effort, with good results, to write more.

All of this has taken a toll on my body–most of it is good. But. Working so hard, and doing so much, leaves me with less time to sleep, and in need of more rest than usual. For a while I simply made up for it on the weekends, and invested in some caffeine during the week to avoid falling asleep at my desk. That worked, for a while.

I’ve had a few partials lately, one of which resulted in a fall down the stairs. Naturally, my arms were full, and naturally, it resulted in a comic face plant at the bottom worthy of America’s Funniest Home Videos. (Don’t worry, aside from a couple of bruised knees, and a bruised ego, I was fine.)

Last year, my doctor increased my dosage of Dilantin, from 300mg a day to 400mg. I was to begin taking 100mg in the morning, in addition to the 300mg at night. I found it unnecessary, to a certain extent, in addition to finding difficult to add to my schedule, since I don’t wake at the same time every day. So I didn’t take the morning dose.

Having the extra medicine was helpful, because of the never-ending battle with insurance companies to cover my shit means I have a hard time scheduling doctor’s appointments. (I need to make one now, but can’t because I owe the full cost of my last visit, which I’m having difficulty paying. Last time I tried to pay, I was transferred three different times before I was put on hold and the line cut off. Joy.)

After the fall down the stairs, I decided to add the morning dose. I was interested to see if all of my partials would stop. I was also interested to see if I could get by with less sleep than I usually need.

The partials have stopped, but my body’s needs haven’t changed. I still need sleep. Yesterday, I was exhausted. I couldn’t stop yawning to save my life. No amount of caffeine had any effect. I kept nodding off at my desk. Near the end of my shift, I wondered if I could summon up enough energy to go to the gym.

As if responding to my question, my body sank deeper into drowsiness.

The answer was no.

Could I simply skip the gym, go home, and write a post for the next morning?

Nope, my body said. I imagined laying in my cozy, warm bed.

Fine then. I’ll skip the gym, skip writing, go straight to bed, and I’ll just wake up at a decent hour and write then.

Nope.

There was no getting around it. I needed rest. I needed to recover. It’s perfectly fine to push myself, so long as I draw back every now and then so I can recover.

I know that, but it’s damn hard to accept–especially when I have so many new readers and commenters. I don’t want to disappoint.

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.

Another Day, Another Fucking Partial

Partial seizures are the bane of my existence. They’re worse, even, than grand mals. Partials disrupt my day. They mean spilled coffee. Half my medication, flung all over the room. Food on the floor. Sore knuckles. Maybe even a scraped knee.

Following that is the heavy silence. The silence that, depending on the audience of my performance, is filled with shock and fear, or judgment.

“Oh my god, what was that?!”

“Look at you, thinking you can live a normal life. What did you do this time? Look what happened. You shouldn’t even try. Now I’ve got to deal with this.“

That’s what I hear in the silence. It never fails. And every time it makes me angry. My hands shake as I try to clean up, go on eating, or do whatever it was I was doing. That silence never let’s me go on with my day.

And inevitably, because I’m tense and angry and stressed, it happens again. Another mess. Another bruised knuckle, or wasted morsel of food.

And another round of silence that judges me.

At this point, I usually leave the room. Sometimes I try to nap. Other times I go off alone to smoke a cigarette, closing my eyes and concentrating on my breathing.

Either way the day is ruined.

At least when I have a grand mal, I’m too occupied to hear that silence.

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.