[medical discrimination, medical abuse] What my roommates have taught me this hospital stay.

youneedacat:

My roommates have taught me more about how people at this hospital see me, than almost anything else.

I’ve had some really good individual nurses and other people here. But when I look at how overall people treat me versus my roommates, there’s no comparison.

My roommates got proper anesthesia, either local or general or heavy sedation, when they were operated on. Under local anesthesia, if it wasn’t working, all they had to do was squeeze a hand and they’d stop everything and administer more.

After their surgeries, people doted on them. Even when their pain was less than mine had been, the nurses were coming in practically every five minutes to check up on them and doing every possible thing from medications to positioning, to help with their pain. Even the way they talk to them is gentle and friendly. And when they had visitors they were never thrown out, regardless of loudness. Once they even explained to a visitor that soon they were doing away with visiting hours so they wouldn’t bother throwing him out.

I still remember what my pain was like after my surgery. Worse than many more invasive surgeries I’ve had. And not controlled as well. Interacting with my existing neuropathies and other chronic pain to become even worse.

It felt like the pain filled my body, filled everything I touched, filled the room, and filled my mind. It filled my mind so hard that it pushed a lot of other things out. Like identity, orientation to my surroundings, comprehension, and lots of other cognitive skills. I often had delirium to one degree or another. But nothing could make me escape the pain, and I just had to endure it. The meds put a tiny dent in it but not enough.

Today I tried hard not to cry because when my roommate complained of unbearable pain they treated it as an emergency and sent in doctors specializing in pain and anesthesia to make her better. Her pain, like mine, like my last roommate, is made worse by one or more tubes rubbing her incisions. I’m almost crying because of how they treated me.

There’s a point with a certain kind of pain where I react more or less normally. But usually pain makes my body and face stiff. My mouth hangs open. My face goes blank. My eyes go fixed. I move as little as possible. Other times strange moaning sounds come out of my mouth and my body writhes around uncontrollably. Often it’s a combination of both reactions.

I once attended a talk by a nurse specializing in pain. About the under-treatment of pain in people with developmental disabilities. She gave us handouts that stressed that for people with communication problems, the important thing is to have people around who know how our specific bodies respond to pain. That way they can alert the nurses when pain is out of control.

One such person is my DPA. She spent all her time by my bed trying to explain how severe my pain was and how she could tell. They treated her with suspicion. They tried to throw her out as she was trying to orient me through bouts of disorientation and delirium. Her attempts to point these things out were dismissed as well. “She’s not delirious, she’s sleeping.” With my eyes wide open? There was anger and irritation in their voices as they talked to her and she had to call in the head nurse to be allowed to stay and comfort me.

And I keep thinking I must be really tough. Because I’ve made it through all this with far less medical help than all these people passing through. I leaned hard on my friends, and on the knowledge that so many people all over the place were pushing for me. And I couldn’t be more grateful. But damn. Nobody should have to go through this. Nobody.

And disabled people are more vulnerable. Aside from the conditions they were getting surgery for, my roommates were nondisabled. Not cognitively disabled. Not developmentally disabled. Not communication impaired. Not wheelchair users. Not on feeding tubes. All of them white, of course, since nondisabled people of color can be treated as bad as white disabled people like me, let alone disabled people of color. Not lesser beings who the medical world would just as soon get rid of.

It is hard to realize again and again the hate. The annoyance that you exist and need and want the same help everyone else seems to take for granted. They never wanted me here even after they saw my life was in danger, they didn’t want to save my life, and they sure as hell didn’t want to make me comfortable. A few individuals were great but the system was horrible.

It’s hard to just sit there and know that to them you don’t matter.

I want to throw things dammit. They are telling my roommate to take her time starting to walk and that what she’s doing already is one huge step and not to go too far. You already know how I got treated when I said the same of myself.

And this isn’t about jealousy. This is about my roommates getting what everyone should get and me getting what nobody should get. It’s frustrating.

I shouldn’t have to be this tough. I should have had what everyone gets. When I ask for what everyone else gets, I get told I’m holding up care that other patients need. When other patients get what everyone else gets and they worry about whether other patients are getting enough care, it’s “of course, stop worrying”.

Men dominating conversations is seen as normal. When women get exactly equal time with men, everyone perceives the women as taking up 90% of the time.

Nondisabled patients getting all the care is normal. When I ask for even a fraction of what other patients get, I’m accused of being a selfish waste of resources who is wanting so much more than other patients get.

See the similarities there? It’s not that I want any more than anyone gets. It’s that when I get even a little more than the nothing they want to give me, they treat me like I take up all their time. I’m a nuisance. I’m selfish and greedy for wanting the bare minimum. But it’s all an illusion. I’m really getting next to nothing and having to rely on my own resources to battle pain so strong it tries to destroy my mind. And it’s always like this. If I told you half of my hospital stories… they all run like this and my regular doctors know it but they can’t protect me.

Something is terribly wrong here and me, it ain’t.

Bolded: that’s the thing people don’t realize a lot of the time is that this isn’t an “isolated incident.” This is the manifestation of systematic discrimination.

I also am a survivor of medical abuse and discrimination. I’m a survivor of being treated as nonperson, crazy person, less-than-human, doesn’t count, too much trouble, liar, faker, hysterical, exaggerator, drug-seeking, it’s-all-in-my-head, and the recipient of fucked up assumptions and long-suffering sighs. I’ve had my consent or lack thereof ignored. I’ve been lied to by “medical professionals” more times than I can count.

It’s fucking unbearable. You can feel it chipping away at the most basic foundations of your humanity.

THESE ARE NOT ISOLATED INCIDENTS.

I am angry.

youneedacat:

My roommate had surgery and is in as much pain as I was all last week. They are falling over themselves to control it with a large combination of medications. I basically got one medication no matter how much agony I was in and nobody ever hurried to take care of me. I’m not mad at her. She’s getting what everyone should get. I’m mad at this damn hospital for not taking my pain seriously. I also found out through a previous roommate that when they rely on local anesthesia and it isn’t working, they will have the person squeeze their hand and they’ll give more. Me? “Just one more thing. And another. And another. I know it hurts keep going. You won’t remember this later anyway.” While I screamed.

I want to throw things.

Not Done Yet.

calliowong:

Dear Tumblr,

I thought I was finished speaking when I wrote the last sentence to my supposedly-last post, “Thank You.” Apparently I’m not done. There’s something you all should be aware of. This comes to you in rough-story form, with all relevant folks addressed using the gender-neutral honorific Mx (instead of Mr, Ms, or Mrs).

I was going to wait until the weekend to write, but the information is the same regardless of how polished I write—and I feel this is necessary.

A few days ago, I heard back from some friends from Smith Q&A (a group in support of transwoman acceptance at Smith), who contacted others on my behalf about the legality of using the FAFSA as a bar against my admission.

Jon O’Bergh, Special Assistant to the Under Secretary of the US Department of Education, gave some clarification on the matter. Mx. O’Bergh commented on the fact that, according to both the Dep of Ed and FAFSA, the self-reported sex indicator on the FAFSA is used for Selective Service only. Then Mx. O’Bergh referred me to Cameron Washington, Web Usability Specialist at FAFSA, for further clarification.

I won’t keep flitting about with a play-by-play of each specific person’s contribution to the (quite-substantial) email chain that built up. However, according to Mx. O’Bergh and Mx. Washington:

The FAFSA sex reported is only used for Selective Service purposes. Neither FAFSA nor the Department of Education cross-checks sex information with Social Security. The federal government is irrelevant in this conversation. All concerns about my hypothetical admission endangering Smith’s status as a historical women’s college receiving federal funding?

Irrelevant, and wrong. The government does not care about my sex marker.

Thus, Smith College’s decision not to process my application based on my FAFSA sex marker is at Smith’s sole discretion. Their hand was not forced; they chose this.

Smith College is fully capable of reviewing my application and making an admissions decision for me based on my credentials. Just—it’s so simple, really.

This is obvious discrimination on Smith’s part.

In case I didn’t mention earlier:

Dean Shaver’s  words to me over the summer, when I was still trying to figure out Smith’s transgender-acceptance policies, were that: “It seems to me that if your teachers provide the language you suggest, all your pronouns would be female and therefore consistent with what Smith is expecting.” She spoke of school papers and transcripts consistently reflecting “female” for my application. Nowhere was there mention of FAFSA, a federal financial aid form.

I am quite convinced that Smith’s supposed transgender-acceptance policies have been evolving with every letter of this Tumblr posted, with every obstacle I manage to clear.

So, Smith chose this path.

Make it a hard walk, folks.

 

 

Calliope.

(via shwetanarayan)

I find this hilarious. Also white supremacist.

widdershinsgirl:

alexandraerin:

crackerhell:

When I discuss the racism that white Jews in America perpetuate on PoC, I make sure to do one thing every single time:

Specify that I am talking ONLY about white Jewish people.

I do this because I really don’t have shit to say about non-white Jewish people. I’ve never seen one use being Jewish to excuse white supremacy so I mean. Not really a problem for me.

However, white people, regardless of ethnic background, have one big thing in common: when you say white people, they’re so used to being the default that they immediately think ALL people.

Every single time a white Jewish person on tumblr has had some shit to say to me, they ALWAYS change “white Jewish people” to “Jewish people”.

I am not talking about “Jewish people” because that includes people I have no problems with.

I am talking about WHITE Jewish people. More specifically, the ones in America that I personally have to interact with.

Of course, when I clarify this, I get the OTHER thing white people just LOVE to do; group all Jewish people in one bag as if they all have the exact same experience.

Sadly, as a negro who deals with misogyny AND queerphobia, I’ve seen this crackerlicious tactic a billion times. White people in groups that include non-white people LOOOOOOOOOOOOOVE using the violence aimed at the bottom and pretending it’s “all of them”. They LOVE it.

You tried tho, you really did.

Sadly it’s STILL only the WHITE people I hate. :D

White people in groups that include non-white people LOOOOOOOOOOOOOVE using the violence aimed at the bottom and pretending it’s “all of them”.

(Repeating with emphasis for the white queer and trans* communities.)

Ok, I am going to go over this AGAIN, because it never seems to sink in.

freedominwickedness and I have run the numbers, in increasing detail, multiple times. Trans* is the classic example of the exception proves that the rule exists. Statistically, in terms of risk, white trans* women exist on the same order of magnitude of risk as trans* women of color, the only group of white women where that is true. In every other demographic, white women have orders of magnitude less risk of violence than women of color.

Let me repeat that: For a white woman to be as disposable to the Patriarchy as a woman of color, she has to be trans*. This demonstrates rather depressingly that the only value of women to the Patriarchy is whether or not they are able to produce white babies.

Trans* sisters regardless of skin color, keep yourselves safe. A well-developed sense of danger really can keep you alive, and where trans women are concerned, pale skin really does not protect you. The numbers do not lie.

Wow, okay. You’re wrong.

This is the reason I made this entire post, about the appropriation of the violence against Black folks (specifically police violence and criminalization in this instance) by White people who share an axis of marginalization: gay, trans*, disabled, et cetera.

PALE SKIN REALLY DOES PROTECT YOU, NO MATTER HOW MUCH YOU WANT TO DENY IT:

The 2010 NCAVP survey found that 44% of the murder victims in their study were trans women, but trans women made up only 11% of their sample; in the 2009 report, half of the murders reported were of trans women. Surveys of the trans community have found that 98% of violence in the trans community was targeted at trans women, and that trans women of color accounted for 70% of the murders of trans people reported internationally in 2003.

For fucks sakes, every single time anyone tries to argue “in this instance of marginalization, racism doesn’t exist” THEY ARE ALWAYS SHOWN TO BE WRONG. Because no matter how you want to shift paradigms or categories, no matter how small a sample group there is, if there is a person of color included, especially a Black person, THAT PERSON WILL BE SUBJECT TO VIOLENCE FROM INTIMATE PARTNERS, POLICE, INSTITUTIONS, AND WILL BE CRIMINALIZED TO A MUCH, MUCH LARGER DEGREE THAN A WHITE PERSON AFTER ALL OTHER FACTORS ARE ACCOUNTED FOR.

sancheck:

You know what having a mental disability is?

It’s never asking for accommodations you know you desperately need because you’ve been taught that you don’t deserve them.

It’s being afraid to say you can’t do something or tell someone that you need help because you know they’re just going to guilt you about how they thought you were “stronger than that” or “why can’t you get over it.”

It’s the fact that being seen as disabled is mutually exclusive from being seen as “functioning,” and if for one second you look like one, then obviously you can’t be the other.

It’s the fact that “functioning” for you is held up to the exact same standards as everyone else who isn’t disabled, and functioning any less than “highly” (perfectly) means you’re worthless and can’t be trusted to do anything right or well.

It’s the people who love you never, ever being able to grasp the fact that “irrational” or “all in your head” doesn’t change the fact that you experience what you experience and it fucking hurts.

It’s people telling you that you need to smile more, or speak up, or try harder because “everyone has bad days.”

It’s people saying things like “well at least you can walk” because physical disability is seen as more valid and real than your disability.

It’s also, at the same time, nobody saying you’re “brave” or “inspiring” for managing to do things outside of your limitations.

It’s being told you’re horribly selfish for being the way you are, and being expected to change that and never fight with it ever again.

It’s people you love honestly telling you that they’ve suffered too because of you, and it’s so difficult to deal with you, and you should be grateful they put up with it.

It’s being eyed in the hallway because you’ve been labeled “dangerous” even if you haven’t actually hurt anyone.

It’s being told you’re just “doing it for the attention,” and being told that needing attention is bad.

It’s being told in order to be good or valued that you need to somehow magically make yourself all better.

It’s relatives asking all the time if you’re “still” taking medication.

It’s people listening to neurotypical people more than they listen to you because everything you say is automatically discredited because you’re insane, or broken, or some other bullshit excuse for ignoring you.

It’s being told that it is impossible for you to know what’s best for you.

It’s never getting a “get well soon” card when you’re being treated because no one expects you to “get well,” or thinks there’s anything for you to get well from.

It’s having to repeatedly explain that there’s only so much you can do, and to please not push you, but no one listens.

It’s being reminded every day of your life that you are a weak, horrible, diseased thing, and that first and foremost your kind should be eradicated from the genome instead of treated.

It’s fighting with your insurance repeatedly over whether or not your condition is “legitimate” enough to be covered.

It’s hating yourself, and feeling like a burden, and being incredibly lonely, and being marginalized because there’s something wrong with you.

It’s looking in the media and seeing 9 out of 10 portrayals of someone with your condition being a manic, screaming, uncontrollable lunatic; or a drooling, childlike, oblivious dullard; or any combination thereof. (What I’m saying is, negatively stereotyped all to hell. And if they’re not a bloodthirsty villain, they’re a plot bus.)

It’s probably having multiple slurs against yourself solidly ingrained in your own vocabulary.

It’s having hordes of people question or genuinely outright not believe your disability even exists.

It’s your employer or school never accepting your sick days because you aren’t really “sick.”

It’s syrupy fountains of superficial pity being poured over you whenever it’s convenient.

It’s having your condition romanticized and glorified to the point where everyone is surprised and disappointed to find out that in real life it’s ugly, and messy, and makes you absolutely miserable.

It’s getting fired for all of the above, even if you’ve never made a mistake any worse than your abled coworkers.

It’s wondering every fucking day what you did to deserve this.

That’s what it’s like.

(via deliciouskaek)