If You're Unhappy & You Know It, Shut Your Mouth

there's been a lot of discussion lately about assisted suicide, a lot of it stemming from a movie that's coming out called "me before you" which i know nothing about and so will not comment on directly. instead, i want to talk about how disabled people talk about and treat other disabled people. id like to talk about the voices that go unheard in our struggle to be treated with respect and dignity, and mainly id like to talk about the multitude of people, both SJW's and disabled people themselves, who post about how outraged and indignant they are that someone could even hint at the idea that disabled life isn't worth living.

i think people should be a little more cautious in their outrage and indignation with this. i think that in a lot of ways, other disabled people are sometimes even worse than healthy people at criticizing and silencing other disabled people. i think there's a really, really bad habit in our community of being offended when someone else from within feels they would rather be dead than live with their disability the rest of their lives. just like most other marginalized groups, we are very good at eating our own. sometimes we go so hard with the "im proud to be a tubie/wheelchair-er/survivor/warrior/whatever" stuff that we can make other people who are those things feel completely invisible because they don't feel that way and are being told they should. we silence them by saying, "youre not doing anything for the cause with all your talk about disability sucking. sit down."

i didn't see it before, but it rapidly became very clear to me when i tried out various support groups/forums for the surprise colostomy i had found myself left with. i didn't stay in any of them for long, because i very quickly realized that if anyone else legitimately felt the way i did about it--that i would rather be dead than live with it--they weren't speaking up. in fact, it was taken as a personal offense that i would even dare think of such a thing, and i was instructed unanimously to seek psychological help, though the tone of this 'advice' ranged from sympathetic to downright nasty, including one person who encouraged me to go ahead and die because people like me are the reason there's a stigma around ostomies and everyone else would be better off without my voice being heard.

and while i understand academically at least, why people might get their feathers ruffled, i dont understand it on a personal level. it is not one and the same thing to say "i personally do not feel that MY life is worth the price tag i have to pay for it" and "everyone else in my situation isn't worth the price tag either". people react as though it is a given that if you dont feel your own life is worth living because of Reason X, theirs isnt either. it doesn't seem to come up very often that while you may share a reason, you don't share a life. and thanks to the popularity of the pain olympics, we can't point out that our lives are different, because its throwing down the gauntlet for everyone to tell the best sob story that ends in triumph over adversity.

i have never felt so alone in my life as i have since december. there is *nowhere* for me to turn where i can feel accepted and validated. my feelings about the bag have not changed, i merely stopped talking about them because all it has brought me has been grief and guilt and arguments. it turns out a couple of choruses of "im unhappy and i dont want to be here" is even more taxing to the soul than "99 bottles of beer on the wall". of course there are people who have been very supportive of my feelings, but they aren't dealing with my situation, and there are people in my situation who are not supportive of my feelings, and there has been no overlap between the groups. even the people ive spoken to or post-lurked on who also hate their ostomy still have other factors and seem to feel the reward is worth the cost. i dont. i never have, and i never will. the one person i love more than anything is why i stay--because i love her, and almost losing me nearly killed her as well, and i care about her well-being too much to voluntarily do that to her again. but i am not grateful to be here.

and that doesn't mean i dont want to live, it means i dont want to live like this. i don't want to care for this thing, i don't want to live with the godawful side effects and constant misery and pain. i don't want to have it on my body. and frankly, it upsets me that anyone could tell me that it makes me ungrateful, it makes me selfish, it makes me a blight on the disabled community because my god what kind of message am i sending. i didn't think of myself as a messenger, but i am constantly told otherwise. id better change my tune or stop singing, because the disabled community at large is more important than me. i am not the greater good, and if i won't sing in harmony with the rest of the chorus, i need to sit down.

a huge factor in play here is also that i wasnt given a choice in the matter. i hear a lot that im not alone in that, that nobody would choose to have an ostomy, but im not saying i didnt have a choice because the alternative was death--that's just having a choice you don't like. i didn't get to decide to live or die, that choice was made for me. i never consented to having it done. i had no idea that it had been done. it had never even been something that was ever brought up by any of my doctors in any of my appointments my entire life. it was never considered or discussed, and while i have a lot of fears regarding things that could go medically wrong with me, i never feared this.

but i didn't find any allies even among others who woke up one day to find themselves suddenly with this bag they weren't prepared for. they were all happy to be alive, too. they all said i needed to "get some help" and assured me that how i felt would change, and i'd learn to appreciate the bag and discover that i could still have a super awesome life. i would adapt and find a new path and be grateful to still be alive. i know it was well-intentioned, but it didn't bring me up. it felt like i was just sinking deeper into the quicksand and everyone else was standing around the pit talking about how they swam out of it and i would be able to do it as well, instead of reaching out to help me. maybe they all really were just coping that well with their stuff and something is wrong with me. or maybe they're not coping that well at all and they're afraid if they tried to help, theyd realize they were still in the pit all along.

cause the thing is, when the bulk of the disabled community screams as one voice about how proud they are to be disabled and what a warrior they are and how strong their will to live is.. the ones who arent screaming find themselves on the outside of the community. like theres something wrong with them because theyre not proud of their struggle or because they can't overcome their disability and it looks like everyone else has, and everyone else is handling it better than they are. so as a group we agree to present a united front by pretending we're standing on the edge of the pit even if in reality we're up to our eyeballs.

when healthy people shut you out, it sucks, but hey, we already knew we weren't part of that world anyway and we can just go meme about it and laugh with our fellow spoonies. there's a solidarity in being a marginalized group. but when its other disabled people shutting you out, you find yourself *very* alone in the world. at least the ring around the pit is talking to you while you sink so you're not drowning by yourself.

 i wish more people would consider the implications of how what they're saying makes some of their fellow spoonies feel. because to me, as i scroll through dozens of posts about not just this movie, but just in general about ableism, about pride, about struggle and the inevitable triumph, overcoming, fighting, and warriors, what i hear is a cacaphony of voices all telling me that my feelings are offensive and stupid and they dont matter because there's a larger picture. there's something*wrong* with me because i can't put on a smile and a tshirt that says "proud to be an ostomate" and stop making people uncomfortable by being honest.

it reminds me  of how i felt when i figured out that i was gay, and i was constantly on guard against letting anyone know that. the real me was locked away inside, because i had to protect her even though i was ashamed of her and wished she'd just stop being awful and go away. and all these years later, ive found myself back in the closet again, lying to everyone and swallowing my truths so that i wont be rejected for feelings i can not change or control. its fucking lonely. and while obviously im *glad* that most people find a way to overcome their illnesses, adaptive devices, and cyborg parts, or at least make peace with them, that simply isnt true of everyone. it feels awful enough to spend every minute of every day wishing for an end to this perpetual physical misery without also feeling like you're a terrible, selfish, broken person for not being able to cope with it better.

we need to make it okay to not cope. we need to make a safe space for people to say, "im not coping" without being told theres something psychologically wrong with them and they need to be medicated. we need to listen to each other and really, truly care what the other person is saying. we need to recognize that its OKAY to not feel like a warrior, that its OKAY to not be comfortable in your own skin, and that its OKAY if its not for reasons listed in the DSM. we need to make it OKAY for people to talk about death, and to want it to happen on their own terms. we need to make it okay to not be okay, and we need to stop making the situation worse by telling people who aren't okay that they need to shut up and stop making disabled people look bad. if we want healthy people to stop looking at us as poster children, i think a good start would be not looking at each other that way.

i don't want to be expected to live up to anyone's standard of disability or illness--healthy or otherwise.

im not a tubie. im not an ostomate. im not a spoonie or a GPer or a mito warrior. im not sick. im not disabled. i am not a spokesperson or representative of any of these communities. im just me. im just a girl with a lot of medical problems and no fight left in me. im just a girl who isn't coping but does a really good job pretending that she is. im just a girl being held prisoner in a body that won't work. i will never, ever be able to have the life that i want, and i do not want the life i have. i dont want to pay the price tag thats attached to this beating heart--but im doing it anyway. im just a broken girl who's still *here* and wants that to just be enough.

im just me, and i am not okay.

okay?

#icantbreathe aka the time police almost killed me but didn't.

i want to talk about white privilege. before you click that little X in the corner, i want to tell you that i understand what you’re feeling right now, reading that. you’re thinking, “i’m poor” or “i’m disabled” or “my grandparents imigrated here”, or any one of a thousand other reasons you feel that you aren’t privileged. i understand that because i used to feel the same way. i grew up in a welfare family. at the end of the month there was never food in the fridge. i wore tattered hand-me-downs and our christmas presents came from the telephone company or the salvation army or whatever charity took pity on my single working college student mother and her two young daughters. i am also seriously chronically ill and physically disabled. i use a hearing aid, a wheelchair, a walker, and i eat through a tube stuck in a hole that was surgically punched through my stomach wall. i am gay, autistic, and 5th generation american.

i am also white.

i used to think, probably like you are right now, about the terribly difficult life i had and still have. how could i be privileged? look at all the evidence that i’m not privileged, right? but privilege has different levels. if you are in a heterosexual relationship right now, you have heterosexual privilege. this is true no matter what your skin color is—you are privileged in a way that i, as a lesbian, am not. you do not have to live in fear that someone will hurt you or the person you love for being together. you can get married and never worry about what state you’re in. you can adopt a child, you can visit your partner in the hospital, and should your spouse die without a will, you will get whatever rights are due you, including survivor benefits and unquestionable custody of your children. none of this is true of me. so in regards to sexuality, you are more privileged than i am.

so when i say the words “white privilege”, i want you to understand that i am talking about your skin color and nothing else. the rest of your life is objectively excluded from this argument. it doesn’t matter how poor you are, or what gender or sexuality you are. it doesn’t matter if you have a wheelchair or a seeing eye dog or an ostomy. if your skin is light, you have a privilege that people who are dark-skinned simply do not have.

when a police officer sees you standing on a corner they assume that you are waiting for a friend, waiting for a bus, waiting to cross the street, or just hanging out. if you’re in a mostly black neighborhood, he will assume you are lost.

but if you have dark skin, and are standing on a corner, they assume you are buying or selling drugs, looking for someone to carjack, waiting for your fellow gang members, casing a place you intend to rob, or, if you’re a female, prostituting yourself. if you’re in a primarily white neighborhood, he will assume you are there to commit a crime.

white privilege is being able to walk down the street and having nobody notice you. when your skin is dark, you cannot blend into the background that way. you stick out even among other dark-skinned people as a target of interest to suspicious whites.

i want to tell you a story from my life now.

this all happened only a few weeks after my 18th birthday. a legal adult and in a bad mental place, i made the poor decision to steal a book from a toy store. it was stupid, it was illegal, it was wrong, and it ended with me in handcuffs getting stuffed into a police cruiser and taken to one of philadelphia’s hovels that passes as a police station. i deserved to be arrested and punished—i broke the law. i took something that i did not pay for and i didn’t even have the moral high ground of it being food or medicine.

i was brought into the station around 2pm and put in a cell. as the hours passed, my cell and the ones around me filled up because the police had been doing a bust on several crack dealers in the area. sitting on a cold, dirty metal shelf and staring at a corroded privacy-free toilet-slash-water fountain, chewing slowly on a stale cheese sandwich and purposely not sipping the carton of iced tea i’d been given because i didn’t want to piss in front of 40 strangers, i was surrounded by drug addicts and scared out of my mind. one black woman sat next to me, using a fake nail she’d snapped off her finger to slash into her fingertips, attempting to obscure her fingerprints. the cells overflowed with other black women and a handful of white women.

im gonna interrupt myself to point out that drug users in general are predominantly white, while crack users are predominantly black. if you think it’s a coincidence that they were cracking down on crack, i refer you to leroy jethro gibbs, who doesn’t believe in coincidence.

after a few hours of sitting with my knees pulled to my chest, the elmo fabric of my pants getting increasingly dirty from the squalor of the cell, crying on and off quietly and wanting nothing more than to just be home with my mom, the woman who’d been trying to scratch off her fingerprints looked over at me and frowned. “how old are you?” she said. “shouldn’t you be at juvie?” i wiped my cheeks and shook my head. “i turned 18 last week.” the woman sat up straight and i shrank into myself, afraid of this stranger who’d been arrested—never mind that i’d been arrested, because i wasn’t a real criminal, i wasn’t buying crack.

and this woman, who had made a career out of sitting in jail cells at that point, reached out and gently touched my shoulder. she said, “honey, tell me you didn’t tell them you were 18. tell me you lied about your age.” i told her no, i hadn’t. that i’d figured they would know if i was lying and i’d be in more trouble. she, and a few other women from our cell and the others, then gave me an hours-long lesson on police procedure, on law, on attitude, and on the fact that because i was a young white girl, if i had told them i was only 17 or 16 or 15, i would be home with my mom right now, the way my younger sister who had also taken something and who also was arrested, but had been brought to juvie and released within a few hours, was.

later that night, around 8 or 9 pm, i had an asthma attack. i felt it coming on, felt my lungs tightening, and i kept telling the police officers that i couldn’t breathe, that my inhaler was in my pink backpack i could see hanging on the wall behind a desk. they never looked up, never acknowledged me. i fell to the floor and while i was half-conscious, my cheek resting on the ground in a puddle of my own vomit, my vision going dark and my lips turning blue, choking and gasping for breath, i heard a woman in the cell opposite mine—one of the only other white women in there, and whose husband was a lawyer who probably would not be happy to hear she’d been picked up at the crack bust—shouting that they were going to have one hell of a lawsuit if i died there, and that every last woman on the cell block was a witness. the women shouted and stomped and banged on the bars, all of them yelling and rubbing my back and trying to get me to breathe, screaming at the cops to get the inhaler out of my backpack, telling them i was dying.

at some point someone pressed the inhaler into my hand and, too weak to lift it to my mouth myself, a dark, feminine hand lifted the inhaler to my lips and depressed it, thumping my back, rolling me to my side, trying to force me to take one last breath, to pull the medication into my dying lungs. the next thing i knew my own hand was on the inhaler and i pumped it a dozen times, gulping in the albuterol and forcing my lungs to keep working until the EMT’s arrived. with a blood pressure of 250/180 and oxygen being forced into my lungs from a tank, they took me to the hospital via ambulance and kept me there until my blood pressure dropped. the triage nurse made them take the cuffs off of me when she found out i was in for shoplifting a $5.00 book, and threw the cop out of the room. she told me i had to calm down because i was about to have a heart attack. after she’d stabilized me and i’d been forcibly drug tested at the officer’s request (i was sXe & they had no reason to believe otherwise), i was taken back to the cell. every woman in the hall reached out as they marched me back to the cell, touching my shoulders and thanking god that i’d come back, because they didn’t think i would. those women, those "hardened criminals" that i'd been so afraid of, saved my life. they protected me while i was there, they comforted me and enabled me to survive one of the worst experiences of my life.

after that, i was kept at the precinct all night before being transferred to the “round house” the next day. we were herded around like animals and finally, at the round house, given toilet paper for when we had to use the bathroom. later that second day i went before a judge in a little room with a bunch of individual video-phones. i never spoke. the judge looked at me and released me “ROR” which means “Released on Recognizance”—basically that i realized i’d committed a crime and i was sorry about it. i did not need bail money or a lawyer. i was told i would receive a date and time and location to attend a criminal justice class, which did cost several hundred dollars to attend, but that after spending two hours learning about the justice system, my record would be expunged and no one would ever know what i did. and that’s precisely what happened. the only reason anybody would know what i did and what happened to me, is the fact that i am blogging about it right now.

now that i’ve told you my story, i’m sure you’re saying, “but look there, you are white and you almost died, you were on the ground crying out ‘I can’t breathe’. so how is that privilege?”

the privilege is that i am here. telling you this story. i did not die on that jail cell floor. my heart did not stop beating. they brought me my inhaler when they realized i wasn’t pretending, when they realized what an outcry my death would cause. when they realized that if a young white girl was left to die on the ground, people would be angry. people would care.

eric garner did not have that privilege. the policemen and EMTs that left eric garner to die did not think to themselves, “people will be angry. people will care that this man is dead.”

the only reason that i am alive right now is because i am white. because my picture on the evening news would outrage the nation. a young white girl with a life full of potential was left to die over a $5 book, the politicans and news anchors would say. how could such a tragedy be allowed to happen? how could these officers, these people charged with upholding and enforcing the law, let this child die?

Michael Brown, 18.
Eric Garner, 43.
Kimani Gray, 16.
Kendrec McDade, 19.
Timothy Russell, 43.
Ervin Jefferson, 18.
Amadou Diallo, 23.
Patrick Dorismond, 26.
Ousmane Zongo, 43.
Timothy Stansbury, Jr., 19.
Sean Bell, 23.
Orlando Barlow, 28.
Aaron Campbell, 25.
Victor Steen, 17.
Steven Eugene Washington, 27. (Autistic)
Alonzo Ashley, 29.
Wendell Allen, 20.
James Brissette, 17.
Ronald Madison, 40. (Mentally disabled)
Travares McGill, 16.
Ramarley Graham, 18.
Oscar Grant, 22.
Trayvon Martin, 17.

all black males. all unarmed. all murdered by police officers.

all somebody’s child, too.

white privilege is not having to think of these names every time you leave the house. white privilege is not having to be afraid of being killed for existing. white privilege is having the police assume you are unarmed, assume you are where you are for legitimate reasons. white privilege is being given a pass, being given the benefit of the doubt, being assumed innocent until proven guilty rather than guilty until proven innocent. white privilege is never being in the wrong place at the wrong time.

white privilege is surviving to tell the story of the time you almost died in police custody, rather than having the story told by your surviving loved ones while you are six feet under.