Tags » ‘disability’
October 19th, 2014 by Professor Chaos
Six and a half years ago, I started taking a medication that changed my life, drastically, for the better. There is no doubt in my mind that without starting this medication, I would not be writing this today–I would be dead, probably a couple of times over.
If you have been following this blog for any length of time, you will know that I am chronically ill. My health is not always under control, but sometimes I am granted respites from the tortures that are concocted for me by my body.
Before I began taking this medication, I was very ill. My stomach had lost the ability to empty into my intestine, and my intestine fared no better, no longer able to push food through it. I suffered from frequent blockages and bacterial overgrowths. I couldn’t eat much, and what I did eat, I couldn’t absorb. I lost a lot of weight very quickly. I was told that if I lost any more weight, I’d be given a feeding tube.
Despite the severity of my symptoms, it took years for me to be properly diagnosed. Six and a half years ago, I was finally given a diagnosis, and, even better, prescribed a treatment. It was a medication in the form of subcutaneous injection, a delivery method that frightened me and fully realized for me the gravity of my situation.
In all actuality, as scary as needles are for some people (a group of which I have previously counted myself a member), they are, in and of themselves, not terribly dangerous, and not particularly painful. Six and a half years after that first terrifying needle stick, I do not blink an eye at even the most particularly painful poke.
Since then, I have dealt with situations so much more painful than needles: all manner of trials and tribulations dealing with my health insurance and this medication. From figuring out how to dispose of half a dozen cold packs and a giant styrofoam container each month to making sure someone was home for the delivery man, from finding a place to empty my sharps containers to dealing with a supplier shortage, from prior authorizations to a shipment of the wrong needles to a shipment of the medication without needles, I have been through the fucking mill.
I currently await something far scarier than that first needle stick. In three days, I will give myself my last injection. In three days, I run out of medication, and I cannot get more.
Let me explain as best I can. I still don’t quite understand the situation myself. Insurance companies don’t aim to be understandable, or friendly.
A little over a year ago, I started a new program at a new school, and consequently switched health insurance. This is something I only undertook with much trepidation. In fact, health insurance played a key factor in my decision for what graduate program to attend. (It shouldn’t have had to, but it did. Uninsured, the health costs I would accrue over only a year would be more money than I have made in my entire life.) Fortunately, the health insurance at my chosen program covered all of my medications, even the injectable.
When I transferred my prescriptions over, I was filled with apprehension. What if my new pharmacy wouldn’t fill it? What if my new health insurance didn’t pay for it? What if they refused to deliver it to my tiny little post box at my tiny little apartment?
Unbelievably, the process of getting my prescription was completely smooth. It was a dream. They didn’t have to deliver it–I could just pick it up at the pharmacy. My insurance covered it, and paid for it without a fight, or even a prior authorization. The medication even came in prefilled syringes so I no longer had to deal with the not-really-a-big-deal-but-still-a-minor-hassle of drawing the medication up into the syringe and making sure I got every last drop.
I should have known it couldn’t last. I’ve been burned by insurance companies before. Earlier this month, the insurance plan year rolled over, and my insurance decided to use a new formulary (meaning a list of the medications that they’d cover). Under this new formulary, my medication is considered a “specialty medication” and only 50% of the cost is covered, meaning I can no longer afford it. Without warning, one of the key factors to my health and happiness was ripped from me.
Before you ask–there are no alternate treatments, there is no appeals process, there is no one I can talk to, there is no one I can send H2O2 after with a hickory stick. There is nothing I can do.
There is, however, something you can do. I don’t like asking for help–not from my family, my friends, or even my readers.
But this is also an opportunity–I’ve been considering recently, unrelatedly, starting a new blog. My writing has taken a turn for the steamy as of late–some of it erotica, some of it just more graphic than what this blog usually sees. It doesn’t seem appropriate for Lab Coats and Lingerie, but I have nowhere else to put it.
Instead of a new blog, I’m starting a Patreon account. If you want to be a patron, you’ll get access to exclusive writings about my fantasies, my sex life, and other things I am too shy to talk about here. If I can get one hundred and twenty readers to pledge $1/post, and if I post once a month, that will be enough to cover my medication. I may post more often, and you can set a monthly limit for how much you are willing to contribute. If you want to see what sexy thoughts lie within my twisted brain, and you want to earn my undying (literally) gratitude, then consider pledging, and please share the word. If, for whatever reason, you can’t contribute, that’s fine too, of course. Lab Coats and Lingerie will remain here, free to read, and continuing to update. You still have my gratitude for reading this far, and for supporting me with your desire to read my words. It means more to me than you can possibly know.
September 22nd, 2014 by Professor Chaos
I wanted to give blood today.
I have never donated blood before, only had it taken from me for the purposes of diagnosis or maintenance. It’s not that I was unwilling; I was forbidden from this particular act of charity for one reason or another. But today, it has been long enough since I have lived in Europe, and enough time has passed since I have had sex with a bisexual man, and I am finally, finally above their minimum weight requirement, so I give.
I am having health problems. They are too close, too imminent for me to talk about them here yet. Just know that they are serious, and they are frightening.
Walking to lab this morning, I saw the yellow sign reading “BLOOD DRIVE TODAY” and I was seized with a fervor, a desire to do something useful with the body that has been letting me down so much as of late.
Trapped in the space between numbness and my feelings, I am not handling the news well. The feelings are inaccessible. It’s like I can see them out of the corner of my eye, but when I turn to look at them, they’re not there. They won’t let me touch them, and yet they slip out when I’m not paying attention; grief threatens to spill out of my eyes when I ride the bus home from work. Loss clutches at my chest and steals my breath. The numbness is easier to reach. It surrounds me like a blanket, stifling, yet comforting. It is all I have, so I cling to it, though I am desperate to feel.
The yellow sign poked me squarely in the heart, and I felt an inkling of hope. My body was failing me. Perhaps it could do some good to someone else.
I sat in the booth and fidgeted as the tech took my temperature, pulse, blood pressure (my claim to fame, it is always perfect). “One more test left,” he told me, and jabbed a tiny needle into my middle finger to squeeze out a fat drop of blood into a high-tech instrument. I tried to stifle my impatience. I wanted to be in the phlebotomy chair with its oversized arm rests and sticky vinyl seat. I wanted to feel the poke of the needle in my vein, to see the blood pouring out of me, to feel the lightheadedness from bloodloss and to know that loss was for another’s gain. To save someone’s life. I cannot save mine.
Meanwhile, the tech was frowning and making frustrated noises. I asked him what was wrong. “Your hematocrit is 37,” he said. “We need it to be 38. There’s nothing wrong–you’re perfectly healthy, it’s just we need it to be at least 38 for us to take a pint of blood from you.” He told me that it can fluctuate sometimes, so we tried another finger. 36. He threw up his hands and told me to eat some spinach to raise my iron levels and try again next time. “Don’t worry about anemia,” he told me. “It’s just that it’s not high enough for you to donate today. You’re perfectly healthy.”
Perfectly healthy. It made me want to laugh. If only he knew.
I left the blood drive and headed back to work, crushed. There was nothing more for me to do. My body had failed again, but it was not just letting me down this time. I silently apologized to the unknown stranger who would no longer be getting my blood, whose life I wanted so badly to save. I could not save them today.
There are times when you can only save yourself. Sometimes you can extend the effort for altruism, and save another. And sometimes, you cannot save anyone at all.
July 17th, 2014 by Professor Chaos
As she lay dying, we made the long drive back from his parents’ house. By which I mean, he was driving, not me. I don’t drive, I don’t know how. First I wasn’t allowed to because I wasn’t old enough, then I wasn’t allowed to because of medications, finally I wasn’t allowed to because of seizures. Now I am twenty-eight and embarrassingly, still without a driver’s license. Unless I can get my health under control, I’m not sure that I’ll ever get one.
Her death was with me, weighing on me. I speak up about it, an attempt to lighten my load. I talk of her presence in the scene, how much of an impact it made on me, a young femme dominant. I talk about the tea party I attended at her house, and how much of my love of tea service can be attributed to her. I talk about the love I saw between her and her slave, how it was always something that simultaneously warmed my heart and made it ache, not knowing if I would ever get to experience that kind of love.
“That must be hard,” he says. “To outlive your owner.” And at that I become quiet. There is too much to say, so I say nothing at all, and instead I look out the window, into the night roads, illuminated by street lights. Finally, I reply with a requisite: “I think it must be hard for an owner to outlive their property, too.”
And it must be, I’m sure, but that is not really what is on my mind, which is flooded with thoughts and sorrow.
I think about my property–him–and how, if our relationships lasts, he will almost surely outlive me, something for which I am self-centeredly grateful.
I think about how I always wanted to ask her for mentorship, and how I was intimidated to approach her about it, so I didn’t, and now I never will.
I think that while she lived a full and rich life, she still died too young. I think about the precariousness of my health, my uncertainty of my own life expectancy. I wonder if I will still be here in ten years, in twenty.
I think about myself. I think about heartbreak dogs, and whether those of us who are destined to die young are really worth loving in the first place. (I am not certain, myself.)
But most of all, I think about her, and her smile, and her class, and her generosity, and how I wish I had had the chance to know her better. I think how scared she must be, and how alone she must feel, and how I am certain she is handling it all with the grace and poise we have all known her so well for. I think on all these things and my heart fills with grief: for her, for her loved ones, and, selfishly, for myself.
January 29th, 2014 by Professor Chaos
The Broken Column, Frieda Kahlo
This is about my body. My body is many things. It houses my soul. It has caused me more suffering than possibly anything else in my life. And, also, it’s beautiful. Sometimes, I forget that. Too often, I forget that.
There is a conflict between how I view my body and how it is viewed by others. This follows from the fact that they don’t have to live there. My body is fairly normative in appearance, but that’s as far as it goes. I have a chronic illness, which is mostly invisible. I’ve heard so many well-meaning friends and acquaintances have uttered the phrase that every invisibly-disabled person knows well and hates deeply: “but you don’t seem sick. You look so healthy.” When your body doesn’t function the way it’s supposed to, and society confirms this by constantly reminding you how pitiable and worthless you are, your healthy-looking body becomes a hateful shell, shielding the dysfunction that lies beneath. You walk a line between wanting your illness to be acknowledged, and not wanting it to eclipse the rest of your identity. It can be hard to see value in your body, or yourself.
Body worship is one of my favorite types of play. It’s very meaningful to me for many reasons, with many layers. On the surface, there’s my dominance; I am a fairly stereotypical dominant in many ways, one of them being that I love having attention lavished upon me. But it goes deeper than that.
There’s really no way to look at my body’s defects in a positive way. There are positive things that have emerged from it, such as greater self-awareness, the connections I have made with others in the disabled community, and activism I have participated in that I likely wouldn’t have otherwise. I am grateful for these things. But, in addition to limiting me, my malfunctions cause debilitating physical pain in many parts of my body, as well as fatigue, seizures, and more. The secondary effects are also numerous: frustration at my doctors, who are not equipped to deal with an obscure and untreatable illness such as mine, frustration at society, which is not equipped to deal with a broken person such as myself. It is, at times, difficult not to turn these feelings inwards, and feel hatred towards my own body.
On a physical level, body worship reminds me that my body is capable of feeling pleasure. That’s one way in which it does function, and when you spend so much time in pain, pleasure becomes something of solace. When I go for long periods of time without sensual touch, it’s almost like a surprise, a feeling that I nearly forgot existed. I’m not a spiritual person, but the closest I have come to feeling spiritual is the intimate connection I experience with another person during sex.
In a deeper sense, an emotional sense, it’s empowering to have someone take pleasure in touching one’s body, and being shown that pleasure. Even though I know, on some level, that my body is beautiful, it can be very difficult for me to truly internalize that as love. Instead I externalize my feelings of hatred, convinced that no one would want something so useless, so broken. But touch that is both gentle and eager, murmuring of appreciative sounds, and tender and hungry kisses are all evidence to the contrary. It is proof. Undeniable proof that despite all that feels wrong, there is something right about my body. If I can step out of feeling resentful and broken, if I can see my body through the eyes of someone who loves it and get a small glimpse of their love, this is an affirmation that living in my body isn’t tantamount to being trapped in a cage. At times, it can be powerful perfection.
My body lies in ruins. Reverence can take many forms: sweeping my hair across my neck to kiss my shoulders, tracing my sides with fingertips, touching me, touching my body with an admiration approaching awe. These actions are transformative and I am reminded that, despite its broken columns and crumbling foundations, my body is still worthy of reverence and of love.
March 16th, 2012 by Professor Chaos
Trigger warning: needles
The first time I ever stuck a needle into myself was four years ago. I was twenty-two. I was terrified. I had just been diagnosed with yet another enigmatic, difficult to treat medical condition, and I had been prescribed a medication that required a subcutaneous (or sub-Q) injection, a shot into the layer of fat under the skin. After a long and tedious diagnostic process, I was looking forward to feeling better, but I was still petrified by the idea of that first needle stick.
I felt completely unprepared to administer it. No one wanted to show me how to properly do the damn thing. I knew there wasn’t a huge risk associated with subcutaneous injections–as far as methods of administering medications go, they’re pretty benign, apart from the sharp pointy bit going in your skin.
Last summer I had two of my friends put ten needles into my back and lace them up with ribbon. I didn’t particularly enjoy it–I’m not much of a masochist–but it didn’t bother me that much either. It was painful, but not terribly. It was emotionally uncomfortable, but no more so than many of the medical procedures I have endured. It was a little weird, a little scary. But that’s okay. As someone whose body has endured quite a bit in the name of medical science, I feel the need to balance that out by making art with my body.What I enjoy about artistic BDSM like decorative needle play is the chance to make a point. Putting needles in my back and lacing them up with ribbon is aesthetically pleasing and emotionally unsettling; when onlookers squirm with discomfort, I ask them: Why is this more upsetting to mainstream society than labioplasty? Or high heels? Or any other way people torture their bodies in the name of beauty?
But I digress–back to medical needles. My specialist couldn’t show me how to do the injection because of insurance reasons. My general practitioner didn’t want to do it because she felt uncomfortable dealing with specialty medications. The pharmacist wouldn’t show me how to do it because that wasn’t his job. I felt like of all of these people, all of whom were supposed to be on my team, no one was willing to go to bat for me. None of this did anything to assuage my fears. While I was used to getting needle sticks–frequent blood draws will do that to you–I still wasn’t entirely comfortable with the idea of them, or the sharp pain that went with.
My specialist was the one who finally caved and extended me some kindness, the one to show me how to do it. She was very reassuring and willing to accommodate my uncertainty. First we practiced with some saline solution. I think I did it on an orange before I gave it to myself. She showed me how to uncap the bottle and disinfect it with alcohol. She showed me how to unshield the needle and draw up the liquid. She told me to hold it at a 45º angle to my skin. And then she told me it was my turn to do it.The moment of truth.
And I don’t remember it. I know I gave it to myself on the left side of my belly button and that it burned and was red afterwards, but it often burns and is red afterwards. The terrifying event itself–the poke in the skin, the push of the plunger–I have no memory of. I have given myself the same injection every night (more or less) since then. The memory of that first time has been blurred, washed away by a long and steady, day-by-day, stream of the same action.
I don’t remember the injection itself, but I do remember what happened afterwards with astonishing clarity. I remember being in the car on the way home with my mom. I remember the intersection we stopped at, because that’s when I started to panic. My heart raced and my breath came so fast and shallow that I wondered if I was having an allergic reaction to the medication. The hard part was over, and yet I was still terrified. That first needle stick that had scared me so much wasn’t such a big deal; what it represented was
. It meant a big change in my life. I felt scared and alone and overwhelmed with uncertainty of what my life was going to be like in the future. I felt weak and not at all brave.Needles have become mundane to me. Over one thousand injections later, the stick is still as painful as the first time. I barely notice it. It doesn’t phase me. It’s not because I am brave or tough or special. It’s because, if anything, I am normal. I’m human. The only super power I possess isn’t very super at all, but normal human resilience.
Soon, I will have to face another medical fear of mine. I’ll be getting a peripheral intravenous central catheter (PICC) line, a semi-permanent IV line that will start at an opening in my arm to snake through my veins into a major blood vessel and finally rest in my heart. This will be a contributing source of fluids and nutrition for me for the next two months, as my gastrointestinal tract can no longer do its job. There will be machines and bags of nondescript stuff that doesn’t intuitively seem very nutritious. There will be a hole in my body, and so there will be dressings to be changed and care to be taken not to infect the line, as line infections cause death in 15% of patients receiving this kind of nutrition. A bigger deal than a self-inflicted needle prick, to be sure, but you’d think with all I’ve been through, I could handle it. But I’m not that resilient. That statistic rings in my ears and hammers in my chest–I have a very real fear of central lines, because they end in your heart, and I need that thing to work, goddamnit. It’s one of the few parts of me that does these days.
People tell me “you’ve been through bad stuff before, you’ll be okay” and I want to hit them. I might be okay, eventually, I will probably be okay, eventually, but right now I am exceedinglynot okay. I’m suddenly transported back to that intersection in the car with my mom. I’m that twenty-two year old girl, feeling scared and overwhelmed and unready for a big life change. I feel weak and powerless and needy–all the things I hate feeling.
If courage is the ability to choose to face your fears, then strength is the quality of simply being able to ignore them. I don’t think of myself as being a particularly courageous or strong person. I’m just a person. A person who gets terrified of what the future holds and who tries to calm her fears and handle things as best as she can, but who still melts down and cries and gets unnecessarily angry at people. A person who writes emotional blog posts to try and process all the overwhelming things that are happening to her.“How do you keep going with all you have to live with?” People sometimes ask.
I always respond: “You keep going because there’s nothing else to do.”
February 2nd, 2012 by Professor Chaos
I have recently jumped back into the wonderful world of dating. I have to educate people in my personal life, which is incredibly emotionally exhausting. Not only does it require me to be immediately vulnerable to them, but there’s nothing that makes me feel less sexy than talking about my health. What invariably ends up happening is that I just decide to not have a social life, because it’s too much work.I had this idea of making a pamphlet–“So You Want To Date a Chronically Ill Person.” Whenever somebody asks me out, I’ll hand it to them. It’ll save us both a lot of time and energy–which, for me, is extremely important, as time and energy are my most limited resources.Few people are more outspoken than I am in defending the rights of people with disabilities to have an equal place in sexual or romantic relationships and in society as a whole, yet I can’t seem to finish my “Guide to Going Out with Gimps.” It’s too hard for me while I’m struggling with my own feelings of inadequacy about being a worthwhile romantic partner.
I feel like such a fucking hypocrite. I feel needy, reduced to a mess of insecurity, brought down by my own internalized ableism.
I want to write up my guide. Maybe, at some point, I’ll be able to. But right now, the only things that come to mind are questions, the questions I want to ask someone when they start to fall in love with me.
Will you still love me?
Will you still love me when I am hunched over the toilet, throwing up for the fourteenth time because my stomach has decided it doesn’t want to work that day?
Will you still think I’m clever when I can’t speak because my brain has experienced an electric storm, ripping me away from consciousness?
Will you still consider me brave when I am curled in a ball in bed and crying from the pain because there are tiny rocks building up in my ureters, damming the flow from my kidneys?
Will you still think I’m beautiful when I’m in the hospital, in a gown that hides my curves but reveals my shame?
Will you be okay with the fact that you will almost certainly outlive me?
Will you be okay with the fact that we may never be able to have children together?
Will you be strong enough to hold me up when I cannot hold myself anymore?
Will you be patient enough to come with me to doctor’s appointments, to listen to me ranting about my health insurance, to help me deal with the inevitable mishaps with the pharmacy?
Will you be brave enough to face the inevitability of my situation and to let me grieve? Will you be able to comfort me without platitudes, without empty words of a hope that doesn’t exist?
Can you accept the fact that I will always have to put my health first?
Can you learn to live with uncertainty? Can you learn to live to see the beauty in the moment?
Can you still love me even though I am broken? Further than this, can you learn to think beyond positive and negative judgments, can you accept that is part of who I am, and love that person as a whole?
Will you still love me?
October 19th, 2011 by Professor Chaos
Today is Love Your Body day.
I feel like a fraud talking about loving my body today–I don’t particularly love it. You see, my body and I have a complicated relationship.
Right now, as I’m writing this, I’m sitting in my hospital, in the midst of an extremely boring, 4-hour long medical test. This sort of thing is routine for me. Monday, I had another doctor’s appointment. And I have more next week. On a daily basis, I find myself in a lot of physical pain. It’s hard not to turn that physical pain into emotional pain.
My body is high maintenance. Good health is something most people my age take for granted. I envy them. I am constantly reminded that my body doesn’t work the way it’s supposed to. Even on the good days, I have to remember to take all my many medications and schedule doctors appointments.
Sometimes I can love my body. Even if I can’t forget its malfunctions, I can forgive them, and focus on the ways it can function, and revel in its beauty.
But it’s hard to love your body when it feels like it doesn’t love you.
There is a societal model of illness that is damaging. When we think sick, we think cancer. We think fighting. We think this is something that has to be overcome, a war that must be fought and won, because losing would mean death. When the illness is a part of your own body for so long, who is the enemy? I cannot fight my body–that’s a war that I cannot win, the collateral damage would be too high. Instead, I fight the voices I hear from society that tell me that healthy is beautiful, echoed by my own internal demons who whisper that if healthy is beautiful, I will always be ugly.
So today–Love Your Body Day–the day I am supposed to love and appreciate my body, I instead find myself feeling frustrated and resentful towards it. I will try and put aside my resentment and remind myself something I wrote the other night. Physical pleasure is deeply important to me. I find it empowering to take pleasure in my body when it often causes me so much pain and I take pleasure in the pleasure others take from my body. Here is what I wrote:
My body is broken. My body is beautiful. My body is perfect. No matter how badly it functions, no matter how much, at times, I hate the way it looks, no matter how much pain it causes me, after a night like tonight, after I’ve given myself countless orgasms, I can say, with certainty–my body is absolutely fucking perfect.
August 9th, 2011 by Professor Chaos
The BDSM blogosphere has been all aflutter lately about the devaluation of male submission. And it’s about fucking time. Because the kink scene treats male subs as if they are unwanted, uninvited guests, not recognizing the fact that they are real people with feelings of their own, that their dominant partners cherish them. Every time I see a Fetlife profile that reads “I’m not attracted to submissive men” (frequently, in my experience, on the profiles of female switches and occasionally other female dominants), my stomach clenches. They don’t seem to realize that such an attitude is linked to another problem in the scene: the tokenization of female dominants.
The public BDSM scene has a predilection towards the maledom femalesub dynamic. If you are female, you are presumed to be submissive unless stated otherwise, and if you are male, you are presumed to be dominant unless stated otherwise. (And if you are non-gender-normative, if you don’t fit in a nice little ticky-box, then the scene may accept you but not really know what to do with you.) As much as we would like to believe that the scene is a problem-free sexual utopia, it still suffers from many of the problems that mainstream society does. Straight male sexuality is prioritized, and thus straight male doms are the prevailing players in the scene. Straight male doms have no use for male subs, yet they still like female doms—they like us because we bring a certain energy to the scene and are fun to talk to and be around and because they hope that maybe we’ll co-top their girls with them and that they might be able to get into our pants.
So my sexuality is something that people in the scene can appreciate and sort of see the value in from afar. But the object of that sexuality is not accepted in the scene. While male subs are not seen as potential objects of desire, female doms are seen only as objects of desire. That’s how I feel sometimes as a femme dom in the public scene: they see me, but not my desires.
I feel like Geordi.
[Image: African-American man in a yellow Starfleet uniform, his eyes obscured by a “VISOR”, a piece of technology that allows him to see. Image source: Memory Alpha]
In Star Trek: the Next Generation, the character Geordi LaForge never got laid (this is where I out myself as a nerd, if the pseudonym and the lab coat and the giant boner for science weren’t already a dead giveaway). They had to have a character who was black and disabled, to show how progressive and inclusive they were. But they weren’t progressive enough to give him a sex life. Hollywood had this ridiculous idea about the primal, savage nature of black men, especially in relation to their sexuality. And so the closest poor Geordi ever gets to having a sexual relationship is with a holographic character, and even that is unconsummated–he gets blue-balled by his own fantasies, because oh no, if we show a black man in a sexual situation then the viewers will have to be reminded of the fact that he has a penis. We all know that there’s nothing scarier to mainstream 90’s American culture than a black man’s penis–the popularity of racist porn stemming from the eroticization of this fear belies it. (Not to mention the fact that Geordi falls right into the trope of “disabled characters don’t have a sexuality.”) Geordi and I are both welcomed in our respective communities, as long as we keep our sexual desires silent—closeted—and to ourselves.
When I meet het male doms, I always try to make it abundantly clear to them from the beginning of our association that I am not a switch, I am not interested in playing, I am not interested in co-topping girls with them, I am not interested in anything beyond friendship with them.
And often, they continue to be friendly. And I like that because I am also friendly and I like to have friends, of all orientations. And I think to myself, “you know, we’re different, we get off on different things, but maybe he can appreciate me for who I am even though I’m not submissive and he knows we can’t have that type of interaction.”
“Maybe he can still respect me and the dynamic that I enjoy.” But then I hear language that refers to male submission as if it is something disgusting or shameful.
And that’s what bothers me.
A few months ago, maymay was referred to as “such a fucking weak-ass male submissive that he makes male submission look bad” by a dominant man who is well-known in the local community.
This writing has since been deleted. But the harmful words still ring in my ears. Maymay is not making male submissives look bad. The author is the one who is making male submissives look bad, because he is using the words “male submissive” as an insult. Would he have said “a fucking weak-ass gay”? I think not, at least, not in the San Francisco scene—such words have a clear underlying implication of homophobia. But somehow, using someone’s D/s status as a slur is acceptable.
While I don’t enjoy the maledom-femsub dynamic myself, I think it is a completely valid sexuality. I would never presume to tell someone otherwise. These het-male-doms who make up the mainstream of the subculture that we inhabit? I think they like me and respect me and think I’m hot, but I don’t know if they think my sexuality is valid.
And so I feel tokenized. It’s not fair to me, because where would I, a femme dom, be without my masculine sub? We are two sides of a coin. Today I am not beating my queer drum; today I am borrowing maymay’s drum: You cannot truly respect me without respecting my submissive as well. If you value me, you must value him.
There is a lot of male submissive-shaming in the public scene. You’ll hear it all the time. “Male subs are creepy,” “male subs spoil the atmosphere, so we don’t want to encourage them.” And while I have indeed encountered many male submissives who have acted in inappropriate ways, I have one question to ask: why do you suppose that male subs like maymay who do respect boundaries don’t feel welcome in the scene? It’s not because they are making male submission look bad, it’s because you are equating male submission with badness.
And by doing this, you are hurting me.
This is the reason I go to sleep alone every night. It’s not because there’s something wrong with me as a potential romantic/sexual partner. It’s because there’s no one for me to date. Because everyone’s been telling all the male submissives that they’re unwanted for so long that they won’t come out to play. So I’m sitting here in my kinky sandbox with my toys all by myself.
And it hurts.
If you respect me, if you respect my identity as a female dominant, then recognize that when you devalue male submission, you are devaluing the objects of my desire, and by doing so, you. are. hurting. me. too.
July 6th, 2011 by Fizz
I’m a bit of a clotheshorse for someone on a thrift store budget. Just a few weeks ago, I found myself fretting about what to wear to a party—did I want to go more femme, or masculine? To follow the theme, or not? I got a sexy idea, put it together, tried it on … and frowned. It was exactly the outfit I’d intended, but the image in my head was nothing like the one in the mirror. My body type’s been roughly the same since puberty; why can’t I picture my own clothes on myself?
I am surrounded by examples of how skinny people can choose to look. They’re in magazines and advertisements, shop windows and clothing catalogues. Many of the brands they suggest I wear don’t offer anything in my size; when they do, many stores don’t sell them. And where they are sold, you certainly won’t see a mannequin shaped like me in the window. Plus-size models? Please. According to the LA Times, the average American woman is a size fourteen. From a Huffington Post interview:
At 5’9″ and a size 6, Katie Halchishick was deemed “plus sized” by the modeling industry and asked to “just shave two inches” off her bony hips.
For reference, this is me. The skirt I’m wearing in that picture is a size twenty-two.
(Size numbering itself is a whole other can of worms, of course. It’s surreal to me that “plus sizes” begin at half my numerical size. Someone half my actual size would be tiny! A friend of mine who is that tiny has the complementary complaint: being labeled a “size 0” as if she were all but incorporeal.)
I’m not just angry about the dearth of sex-positive imagery because it makes clothes shopping a pain. We use our partners as status symbols in this society; if I am never depicted as desirable, I have no social value. That means not only that I’m ignored as a potential partner, but that the very idea that I might have one is a little gross. And of course, anyone who happens to genuinely like fat people is therefore a deviant. The Village Voice described Kevin N.’s experience growing up (emphasis mine):
Meanwhile, his “pretty” girlfriend was an all-state softball player—size 16, five feet nine inches tall, maybe 200 pounds—but could bench more than her scrawny boyfriend. A rumor spread that he was gay, which he didn’t bother to refute. Liking a fat girl was so much more of a preposterous scenario that he worried the truth would “make it snowball even more.”
Living with self-respect while surrounded by this bullshit requires constant attention and willpower. I’m lucky—I have good friends and lovers in my life who make it unambiguously clear how sexy they find my shape. And as much as the BDSM scene marginalizes those who don’t fit its favorite dynamics, it’s pretty size-positive; in a clothing-optional dungeon, there is neither the means nor the incentive to maintain the fiction that stick-thin, unblemished bodies are the norm. I feel confident in the dungeon, and that’s great. I need to, if I want to strut my deviant body proudly in a public space. But I still want something hot to wear while I do it, and then I’m struck once again by the frustrating lack of examples.
I know nobody looks like a mannequin. That’s what the dressing rooms are for. The difference is that I have to actively ignore what I’m seeing in order to imagine myself usefully close to accurately. That’s difficult, and tiring, and having to do it depresses me. If those mental gymnastics sound familiar, it might be because you’ve been listening to maymay.
As a sexually submissive guy myself, I look at a lot of BDSM porn, a lot of women bottoms, and I’ll change the genders around in my head. When I see a woman tied up, I think, “It’s okay, I’ll just imagine them as a guy, someone like me.” […]
And the more I looked at porn the more I realized I really wasn’t interested in seeing images of sexuality that aroused me, I was much more interested in seeing images of sexuality that reflected mine, so I could connect with them and see myself represented in that image and have a validation that I actually exist, that other people are like me there.
He reached it through sexuality, I through fashion, but the longing is the same: we both want to see people who are similar to ourselves portrayed as normal and desirable, and the images just aren’t there.
Neither of us is even holding the shortest end of the stick when it comes to having one’s attractiveness marginalized. Being female-assigned, I benefit from the trope of the curvy girl, and from the BBW and fat admirer communities. BHM appreciators exist, but in the mainstream, the assumption that fat men’s bodies are disgusting is so reliable that it can be used to sell advertising (if they’re acknowledged as objects of desire at all). Maymay’s gender/role identification is underrepresented at best and reviled at worst, but when you do find them in erotic images, most of the models are slender and pretty like him. People who are fat, male, and submissive are both kinds of invisible, no matter how sexy they really are.
I could go on, but a bunch of smart people have already done it for me. Professor Chaos wrote a post in this blog about the invisibility of disabled sexuality. For the 2006 film “A Girl Like Me,” filmmaker Kiri Davis interviewed young black women about their perceived standard of beauty, returning over and over to light skin and straight, fine hair. As the New York Times observed, even those who would reject that standard in favor of a “natural” look might not know how to maintain it—and then may have to endure unwanted rubbernecking and touching. Long, straight, shimmering locks are a mainstay of the beauty-magazine pages. When did you last see a shampoo ad feature someone with naturally kinky black hair?
Our shared concept of what a person looks like comes from the images we see around us—images which have already passed through the very narrow filters of the fashion and entertainment industries. This isn’t just dishonest, it’s dangerous. The link between unrealistic body image and adolescent eating disorders is so strong that the American Medical Association recently adopted policy to discourage digital alteration of advertising models. Such alteration is currently common practice, and its unambiguous message is that even the thinnest few percent of us aren’t thin enough.
When I mentally assembled my outfit for that party, I pictured it unthinkingly on my limited idea of that “normal” human—one who is white, able-bodied, female-assigned, and skinny. The difference between my real body and that image means that when I’m doing my damnedest to disprove the “fat people can’t be sexy” meme, to actively create a better example, I can still try on an outfit, look in the mirror, and for a moment before I catch myself, feel disappointed by what I see.
The day after I tried that outfit on, several hours before the party, I was telling a friend over coffee about my experience with mismatched self-image. We talked about fat-positivity, about frustrating invisibility, and about culture and desire and shame. Finally, she asked,
“… so what was the outfit, anyway?”
I told her: black jeans, a wifebeater, and black suspenders. She stared at me. “What?” I asked.
“Fizz, you have exactly the body type I would imagine that outfit on.”
“Except for having boobs, I guess.”
We compared notes. The image in my head was tall and lanky. She was picturing a “big, working-class punk guy”—my type indeed, but for the boobs and the attitude. That take on it hadn’t occurred to me, but I trust my friend’s judgment; I wore it, chest bound, and packing a strapon. I went to the party, had a good time, and by the time the clothes came off again, it didn’t matter what they’d been; there was nothing to be ashamed of underneath them.
When the next party rolls around, I’ll be fretting once again about what to wear. I want the confidence boost, but I also need to be an example. I am fat. I am sexy. And I won’t let the world keep pretending I don’t exist.
June 20th, 2011 by Professor Chaos
Image: Close-up of legs and feet resting on a footrest and gray wheel of an electric wheelchair. Feet are clad in black patent-leather maryjanes with 4-inch heels, laced with ribbon.
When this picture was taken, I had barely begun adulthood and I thought my life was over. I was twenty-one. Many of my health conditions were undiagnosed or untreated. I was sick. I was tired. I wanted to think of myself as strong, but I was just a kid who was lost and confused because my body was breaking. I felt isolated from my friends, who couldn’t understand what I was going through. I couldn’t take care of myself very well. I was so tired that getting out of bed took a huge effort. If I wanted to go somewhere farther than my apartment, I had to use a power chair.
I have never felt less sexy than when I was in my wheelchair.
My chair is not sexy. It is upholstered in a color I can only describe as “medical gray,” a color that says “I have zero personality.” It is a color that says “I am functional and not sexy, because why on earth would I need to be sexy?” The plastic of the chair is red, but not a “fuck me” red. It is not a red that evokes any sort of lust or hints at any secret desire. It is a “we needed to make this a customizable, so you have a choice of red or blue, isn’t that nice” red. The chair as a whole is bulky and not especially well-designed for comfort. Form, I suspect, was not a factor in its design. It is simple, but inelegant, minimalist only insofar as it has few features. It is almost purely designed for the function of getting from point A to point B, and, truthfully, not very well even for that.
Disabled sexuality is virtually erased in our society. People with disabilities are, at best, considered nonsexual, entirely lacking in sexual identity. At worst, we are seen as perverts merely for having sexual desires. And we are, above all, undesirable. The aesthetic of my power chair reflects this–why bother make something sexy when the person using it isn’t going to be having sex?
There is a difference between impairment and disability. To borrow a definition from Stacey Milbern, “impairment is the reality of what your body is able to do, and disability is what society disallows your body to do because it has an impairment.” I have a degenerative illness. Whether I am in a wheelchair or not, my body is impaired. Pain and fatigue are not perceivable by the naked eye. But once I sit in my wheelchair, my disability becomes visible and I can no longer “pass” for able-bodied. When I sit in my wheelchair, the status of my disability does not change, but the way society views me does. Suddenly I am an object of pity rather than desire. When I roll down the street, people avert their eyes.
I don’t want people to see “past” my disability. I want them to see me as a whole person, including my impairments. I have fucked someone in my wheelchair. (I have fucked a couple of someones in my wheelchair, actually, I mean, not to brag or anything.) It was physically awkward and uncomfortable, and also? incredibly hot, because I was living out this idea, that my illness is a part of who I am, deserving of love, just like the rest of me. I also tended to dress more provocatively when using my chair for a similar reason–I wanted to forcibly turn people’s eyes toward me, to demand from them the desire that I knew I deserved.
The photo at the beginning of this post is one of the oldest sexy pictures I have of myself. I took it to make a point. I wanted to confront people with their preconceptions about disability and desirability. With this picture, I wanted to do what social norms prevented me from doing, to scream, “Look at me! SEE me. Recognize me as who I am, a sexual being!”
I no longer use my powerchair. I still have it, but I am on a combination of medications that render it unnecessary, at least for the moment. I do still use a manual wheelchair in certain circumstances. I dream of the day when pushing my wheelchair is seen as a service, not a chore. Some day sleek, sexy wheelchairs will be the norm. Some day someone will worship my wheelchair, and me, in my wheelchair. When that day comes, I will sit as in a throne, and I will be powerful and broken and beautiful and whole.