Tag Archives: shaming
Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business
Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.
Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues
Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”
Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010
Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]
Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film
[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.
National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.
One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.
By Annaham 20 April, 2010. activism, bodies, disability activism, gender, global, justice, news, race, recommended reading, reproductive justice, violence advertising, awareness, awareness campaigns, bodies, global, health, health care, India, media and pop culture, news, reproductive, reproductive rights, shaming
You’ve heard the term “choice feminism” right? Usually used derisively by a person who is arguing: Just because a woman makes a choice does not make it a feminist choice, we have to be able to examine issues on a systemic rather than individual level, some choices that individual feels are good for them are actually going to be bad for the group as a whole and even bad for that individual when systemic issues are taken into consideration.
Here’s what annoys me about this argument. It always comes from the perspective of a white, cisgendered, currently nondisabled, middle-to-upper-class, heteronormative, and otherwise socially privileged person.
That doesn’t mean that it’s that kind of person saying it: it means that the very idea comes from a very specific perspective, in response to a very specific situation.
And not all of us are in that same situation.
The assumption, when this person says “we have to be able to make some sort of systemic analysis and that will mean some choices have to be wrong” they are almost always assuming some specific things.
* Women have been historically locked in their homes tending their houses and families, and larger society pushes against women’s ability to participate in the workforce, and women should participate in the workforce at the highest level possible.
* Women are oversexualized, and that sexualization takes specific forms, such as high heels, lipstick, makeup, dresses.
* Women are stereotyped as demure and submissive, soft and giving, caring and intuitive.
* Women are forced into roles as family carers, encouraged to have as many children as possible and to be the primary carer to those children, stereotyped as having special natural ability to raise children.
That’s just a few.
Here’s the thing. Everything I just said above about “women”? Isn’t true for women. Rather, it is true for white women. Or cisgendered women. Or nondisabled women. It is not true for women as a class.
Yet we continually operate on the assumption that it is!
But ask some other women, sometime, what their experience has been. Many poor and lower-class women, for example, would gladly tell you that they have never had a whiff of an option to stay home with their children — they’ve been out there washing the rich women’s drawers, or sewing them in the first place, so that they can afford dinner for their family a few days out of the week. Ask a black woman about being a nanny and wet nurse. Ask both of those women, and a few mentally or physically disabled women, about when they had their children taken away from them or weren’t allowed to spend any time with them at all (apart from the time they spent cleaning up the messes of the children of those rich/white/nondisabled women they worked for).
Ask a little black or brown girl in some poor neighborhoods about being expected to be virginal (a concept that depends on whiteness from the very beginning) until her wedding day. She’ll probably laugh at you. She’s been continually harassed, abused and assaulted since age six. She’s portrayed in larger culture as an unsexual unwoman and yet every man who crosses her path sees her as a potent sexual opportunity.
Ask the little girl with developmental disabilities about sex sometime, too. No one ever sees fit to give her any information on the subject. They fight to have her sterilized, or even be forced with serious drugs and surgical interventions to stay in a prepubescent state for the rest of her life, so that no one will ever have to deal with the messy proposition of a menstruating or pregnant r*t*rd girl. And if she does get pregnant, that baby had better be aborted immediately, because she could never, ever be anything but an utter failure of a parent. Sterilization is proposed precisely so that she will never get pregnant even if she is sexually assaulted by carers — precisely because everyone knows that she will be.
Ask the visibly disabled woman about being expected to dress up in skirts and high-heeled shoes. Everybody around her will wince at the thought of her in form-fitting, skin-showing clothing. Because, you know, “women” are oversexualized in that way. Ask her about those super-special parenting powers she supposedly has. Everybody around her will bristle at the thought of her having primary responsibility over a child. Because, you know, “women” are stereotyped as having those super-special powers.
All of these girls and women live very different lives as girls and women. The fact that they are marginalized as girls and women is one thing they share in common. But the ways in which they are marginalized are different!
A white woman is marginalized in a different way than a Latina woman is. And a Latina woman is marginalized in a different way than an indigenous woman! A nondisabled woman is marginalized in a different way than a paraplegic woman is… and a paraplegic woman is marginalized in a different way than a bipolar woman is. An upper-middle-class woman in urban New York is marginalized in a different way than a poor woman in urban New York — and a poor woman in New York is marginalized in a different way than a poor woman in Indiana.
There are different mechanisms of marginalization for different types of people — and the greater your difference from the presumed default person, the more different your type of marginalization looks than the privileged-other-than-gender woman.
And that means that what affects you, how it affects you, what issues are important to you, what is good for you and what is bad for you, is different for different sorts of people.
So we cannot, cannot assume, if we agree that “choice feminism” is misguided (and indeed, I believe that straw-ideology would be misguided — well, surely many people think that way, but that is not usually the argument that is being put forth in these discussions), that high heels, lipstick, being submissive, foregoing paid work to raise children, etc. etc. are clearly problematic under a systemic feminist analysis. Because they might be clearly problematic for one set of women — but they are not clearly problematic for the set of all women.
Actually, sensible shoes and baggy desexualized clothing might be clearly problematic for a different set of women who have been historically deprived of their right to any sexuality. Actually, full-time participation in the paid workforce might be clearly problematic for a different set of women who have already been working outside the home for centuries and have historically been denied the right to raise their own children. Actually, being aggressive and dominating or even merely appearing assertive and self-confident might be clearly problematic for a different set of women who are culturally typed as bossy, loud, demanding and unyielding and rarely read as anything but.
Given all of this, I am distrustful of anyone who argues against “choice feminism” or the idea that “any choice is a good choice for that person” because that is not the point. When people protest as you judge their choices against your standards, they are not claiming that no choice could ever be problematic. They are protesting because you are applying the standard of your particular experience against their very different experience. They are protesting because you are assuming that your experience is universal. They are protesting because you are invalidating their own experience, their own feelings and thoughts and desires, in the process. They are protesting because you are objectifying them. And it feels pretty shitty to be objectified.
By amandaw 28 February, 2010. Uncategorized ability, ableism, abuse, choice feminism, class, cultural lens, culture, defaulting, disability, diversity, erasing, essential concepts, family, feminism, fuck that, head asplode, i thought you were supposed to be my ally, invisibility, justice, normal is only one option, power, privilege, privilege-check, problematic attitudes, race, roles, self-determination, sex, sexuality, shaming, social construction, social justice
For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.
Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?
Have you ever participated in the cultural narratives that say:
- Older women should not have children because their children are more likely to have a disability
- Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
- Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
- Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
- Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
- It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
- Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
- Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
- Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
- Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
- To violate those cultural ideas means that you are inherently flawed
- The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all
You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.
But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.
This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.
The rest of us can “choose” to stop existing.
Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?
And you expect me to think you’re any better for my rights and needs than pro-lifers, why?
Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.
I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.
Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?
I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.
By amandaw 22 January, 2010. autonomy, bodies, feminism, gender, intersectionality, justice, media and pop culture, mental health, normality, policy, politics, reproductive justice, sexuality, shaming, social attitudes, Uncategorized ableism, choice feminism, class, cultural lens, culture, disability, feminism, health policing, justice, language, mental illness, neurodiversity, normal is only one option, politics, pop culture, pregnancy, privilege, privilege-check, problematic attitudes, reproductive, self-determination, shaming, social justice, social treatment, speak up, the left, the right
This post originally posted at random babble… on 06 January 2010
The policing of other women’s bodies is never OK from a feminist standpoint. I can’t stress that point enough. It doesn’t serve any productive purpose in feminist discourse.
It is mostly an understood concept among people outside of the mainstream of feminism. Those who are able to work their theory around the concepts of white, straight, cis, upper-middle class, educated, able-bodied privilege.
Yet, a concept that still slips into the space between understanding is the difference between criticizing someone who comes from a place of thin privilege and tearing someone down for a body that is not like your own.
It doesn’t seem like so long ago that I was a size 0. And yet, looking at myself now it feels so far away. That is something I am coming to grips with even today. But my mind remembers it all so well. How can nothing be something? And even at nothing I felt all my flaws. I covered in my towel so I didn’t have to glimpse myself in the mirror and be disgusted by what I saw. I still do that now! I refused to own a scale, afraid of what I would see (I still do that now!)…because it would send me into fits of fear and rage and crying…because no matter how much I threw up and refused to eat I could not weigh what all the charts said someone of my height and weight should…and my thighs jiggled and my belly bulged and my arms — while muscular from kitchen work — wiggled. Even though I was actually nothing. My clothing size was nothing.1
Jennifer Hawkins has thin privilege. Yes. She most certainly does. But when I was struggling I had two kinds of people to look at in magazines and on television: overly photoshopped women who were too perfect, and purposefully imperfect women meant to make me hate myself so that I would work to not be like them. There was no campaign of women of any size coming out to say “we are imperfect, but here we are“.
I will grant this: The Bitch piece does criticize the way that Jennifer Hawkins’ flaws have been the main focus of her nude cover. That is not the conversation that this cover should be invoking in feminist circles. But if she is talking about how hard this was for her, that is not something we should be criticizing. Dismissing her hesitancy, her own insecurities just because she is thin and has a different body type than someone else… that is not feminist either. When has it ever been OK for us to dismiss another woman’s experiences?
Why can’t we, as feminists, understand that?
She no longer has the protection of her Photoshop Deflector Shields, so she is in a vulnerable place, but her thin privilege doesn’t put her in the same place as all the fatties of the world who are crying in clothing stores because shirts are not made for their bodies. I get that. I think Kelsey Wallace at Bitch, for whom I just did a mostly lovely guest blogging stint w/ some of the FWD/Forward team, even gets that despite what I am garnering from her post.
Jennifer Hawkins is not the same as me. She does not know what it is like to walk into a doctor’s office and have hir assume that the pain or illness is caused by my weight before they know anything about me. She does not know the pain of the stares when I have trouble walking somewhere, as if it is definitely because I am a fattie. Or how clothes are made for people like her and not for me…or how society is made to make me feel like I am a big worthless pile of shit whose only chance at redemption is to adopt a “Lifestyle Change” for just sixty bucks a month or whatever.
But while we are throwing stones at Hawkins and scolding her for making us all feel like crap, let’s remember that she is entitled to feel like crap too. And other women who look like her, who aren’t models, who might feel like crap about themselves, they are allowed to feel that way too if they want too. Because some of them might be trying to recover or hold on or what the fuck ever. Maybe they are healthy, and have been told to Eat a Sandwich2, as if it funny or hip, but they can’t gain weight or can’t eat that much for whatever reason.
Or, maybe we, women of any size, are allowed to love our bodies and just be fucking happy, no matter what, and these women on these covers should show us that at any size we can all be beautiful (and maybe we will see more variance soon…but I am a silly, idealistic girl3).
We can criticize thin privilege without policing other women’s bodies.
- Why are women’s sizes arbitrary numbers? Why can’t they be waist measurements? That would be more consistent? ↩
- Yes. I linked to them. I want people to see how awful that thread is, and how flippantly and dismissively that is defended, even when it is pointed out to the mod to be harmful. As in, she doesn’t care that some people find it harmful. ↩
- I can’t back this up. I am not. ↩
Permanent Limited Duty is an option that a service member has to being fully medically discharged. It allows the member to stay active duty on a strict schedule and with very strict limitations of duty. It allows them to fulfill their contract obligation as opposed to being released from it early. There are specific criteria that must be fulfilled, including proving a need to be allowed to placed on PERMLIMDU Status. For me, things like having a minor child who needed insurance and being unmarried and without another source of income would have been sufficient for me to prove a need for PERMLIMDU. There are other factors involved, including approval from your CO and CoC.
In the year leading up to my Medical Board and subsequent discharge I was in so much pain and so tired all the damn time and overall not coping well with what was going on with my lack of medical care. On top of all of my work and training and single motherhood was Physical Training (PT), which was increasing because as my body was struggling my readiness standards were falling due to my inability to push through the pain. As I was forced to ease up I gained a little weight which meant I had to increase my PT. Increased PT increased my pain, which increased my problems overall, and somewhere along the line something broke completely inside me. It was a vicious circle of some of the most cruel means of my life. I needed more PT, but increasing PT caused more injury that meant I had to decrease the type, intensity and amount of PT my doctors would let me do. That decrease caused weight gain…you can see where this is going…
Long story short, I had to be put on a day shift and have my hours reduced to half days because I was not doing so well. While the rest of my friends and peers were moving on to the things that we had now spent over three years training for, things that were going to expand their careers, the actual finish line of all we had worked for, and I was riding a desk. To be fair, it was a job I really grew to love and something I could see myself doing again. My direct supervisor was awesome, and our division boss was incredible. To date he is the most wonderful Senior Enlisted person I have ever had the honor of working for who also happened to be very supportive of my medical process. But it wasn’t what I had trained for, and the sudden disappearance of all of my friends made that even more heavy for me. I was devastated that I was missing that. I felt, once again, like a failure, like my body was a failure. The career I had worked for was crashing down around me and it seemed I had no one to support me through it.
When you are going through a serious medical Thing (for lack of a better…whatever) you start to notice that people tend to disappear. I don’t know if it is too hard for them to handle or if they don’t give a fuck or what…but you run out of people who you can call to take you to a doctor’s appointment because whatever medication you are on makes you so dizzy you really shouldn’t drive, or people who you can call to watch your children while you go to physio. You can’t get someone to hold your hand during an X-ray, let alone get them out for coffee. While I adamantly maintain that my medical problems and disability were not brought on by depression as some would have you believe, being utterly alone during this time cause me an at the time crushing depression. Sometimes I still feel it. I literally did not hear from my former friends. Sometimes if you run into people you used to have energy to club or shop with they bring it up as a polite thing to say, kind of like when people say “How ya doin’?” and never really expect you to answer. So when they would say “How’s…all your…stuff?” I would tell them, “Oh, it’s a big boring mess, how’re you doing?”. If I actually did talk about it I would notice that they tended to not really want to talk to me again (even though most of them had to eventually because of my new job).
I still had to take my yearly training. During my yearly training our annual Evaluations came out. I was pleasantly surprised to receive a relatively high mark on mine. My boss apparently thought that I was doing a lot in the hours I was allowed to be there during the day. I worked as hard as I could with what I had to give, and someone noticed. I was beginning to feel as though maybe I could still do something productive in the Navy, as if the thoughts of PERMLIMDU Status wouldn’t be the end of the World as I knew it. I began to seriously consider it. I was in my annual training with the sister of a friend whom I still had occasional contact with, and who was unhappy with her own eval. As much as I sympathized with her situation, I understood that due to my circumstances our peer groups were different, and my evaluation was not competitive with hers. I made it a point to not discuss my eval with her or even bring it up. But when she asked me point blank about mine, my refusal to answer made her assume that mine was better, and this caused a riff between us that I had hoped to avoid. I felt awful, because she was a really great person whom I had actually though I had made friends with. It is such a tricky thing to make new friends when you are going through so much…
It was very difficult. Nothing I could say was good enough. It wasn’t fair, she said. It was wrong, she said. I was on the same fitness enhancement, she said, and I didn’t even work shift work, she said. I only got that mark because I sucked up to my boss, she said, and because I “lucked” into a job above my pay grade, she said. All she could see were the positive outcomes of what was, for me, a really shitty situation. The one good thing I had going for me was that someone had need of a body to fill a position when my world fell apart, and that it could have been a semi-permanent thing.
That night I received a phone call from my friend, inviting me to meet her for coffee…something that we hadn’t done in I don’t know how long. She certainly hadn’t had time for socializing in a long time, it seemed, and I was pleasantly surprised. We met at the Starbucks near my house, another nicety, so I didn’t have to go far. She treated and we split a big chocolate brownie, because we shared that superhuman tolerance I brag about. We had polite chit chat and I really felt great getting to talk to her.
Until she brought up my eval.
She brought me there to defend her sister’s side of the whole thing — to tell me that she didn’t think it was fair that I would try to stay on in an office where I could get unfair evals when the rest of my peers were doing real jobs in the Navy. I was so ashamed that I didn’t even think to argue on my own behalf. To tell her that it would have been the best thing for me to do so. That it would mean that I could still give my Kid insurance and have an income and finish my obligation. That I would still have some connection to all the work I had put in. But again, all anyone could see was how my situation was unfair to them (even though, in reality, it wasn’t, since my evaluations had no effect whatsoever, on theirs, in case I haven’t made that clear). No one else could see beyond how they felt, to what it meant for me and my family, to me and all the work I had done. Instead of a legacy of nothing finished, I could give something back. So, I lied. I said that I didn’t have that intention — I said I intended to quit and just go away.
But now I was just ashamed.
I was so embarrassed. I put on my Brave Face and finished up the visit as well as I could. I cried the whole way home. I remember deciding that night that if I chose PERMLIMDU that people would all think that I was some big lazy slacker. A Bad Cripple, even though some people would never see me as disabled at all, and why should they? I hadn’t even considered that label for myself yet. They would all see me as someone who was there to milk some system and gain some unearned privilege. I had let someone who was supposed to be my friend shame me into giving up things that I needed for my life. So, when the choice came up with the Medical Board Liason and my Division Officer, I turned it down. Again, I lied. I said that it wasn’t something I thought I could do. It wasn’t what I joined the Navy to do, I said.
It is easy to say “who cares what people think” because we all want to assume that we don’t make decisions based on the feelings of others. But the guilt and shame we feel at the stares and hands of other people is hard to take, so much so that we will often expend our spoons to make the feelings go away — even if it is not to our own benefit.
One thing I should add: Through it all, I learned the value of the friends who come out of seemingly nowhere to support you, just when you least expect it, and the value of friends in Bloglandia. Never let anyone tell you that your blog world friends aren’t as good as Meat World friends. They are all appreciated, especially as the wounds of the lost friends heal. The Meat World friends who held on might be few and far between, but they have been a much needed comfort through the many tears.
So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.
I beg to differ.
You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.
You know what is really hard?
Confronting people on their use of same language.
We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.
You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.
All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.
We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.
Two seconds to reconsidering what you’re really trying to say? Easy.
Changing other people’s deep-seated attitudes? Really damn hard.
How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?
By amandaw 20 November, 2009. 101, activism, justice, language, social attitudes ableism, assholes, culture, essential concepts, feminism, fuck that, i thought you were supposed to be my ally, justice, language, privilege, privilege-check, problematic attitudes, shaming, social treatment, speak up, stereotypes, things people say
I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.
For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.
I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.
It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…
Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.
It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.
On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.
I’ve been in a lot of pain.
I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.
(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)
So, at work today.
I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.
My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.
I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.
The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.
And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)
OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…
And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.
I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.
I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.
They were talking about me.
They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.
But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?
They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.
The difference is, Dr. House is a character.
And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.
I am that woman.
I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?
I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.
Maybe she’s abusing. Maybe she’s handing it out on the street corner.
Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.
By amandaw 23 October, 2009. blaming, i'm right here, media and pop culture, shaming, social attitudes, Uncategorized ableism, abuse, addiction, causation, characters with disabilities, chronic illness, chronic pain, chronic pain conditions, disability, disability in fiction, disabled characters, disclosure, drugs are bad mmm'kay, erasing, fibromyalgia, House M.D., invisibility, invisible disabilities, invisible disability, life, me, medications, myths and misconceptions, pain management, passing, personal, pop culture, privilege, problematic attitudes, shaming, social treatment, stereotypes, stories, television, things people say, work
I am a pop-culture junkie. If you have been playing along at home long enough this is common knowledge. I have been a big fan of House, M.D. since it’s poorly lit pilot. I am simultaneously appalled and amused by his crass behavior. Even the best feminist in me laughs and fairly inappropriate moments.
I have seen and read plenty of critques concerning Dr. House and his manner. I have chewed out my share of doctors for acting like him as if it makes them seem clever. He is a character that is worth critiquing on many levels and for many reasons from many points of view.
What I haven’t seen is a lot of criticism of the characters assembled around House. From Dr. Wilson, or Dr. Cuddy, or the myriad staff members he has had around him (yes, even Dr. Cameron-Chase) I have watched for nigh on five seasons now as all of the people who claim to care about him have done little more than chastise and concern troll his life. Most notably, his addiction to Vicodin as his chosen method of pain management.
A repeated theme throughout the series has been watching person after person in House’s life try to trick or otherwise convince him that he should quit taking Vicodin and learn how to deal with his pain. They constantly badger him about his addiction, and will go to great lengths to get him to quit taking his pain medication.
Only a person who has never experienced chronic pain would dare criticize a person for their pain management.
Because, like it or not, Dr. Gregory House is managing his pain. Sure, he is an addict. There is little argument there. The character admits it freely. In his own words he says that he takes a lot of pills because he is in a lot of pain. Whatever your feelings on narcotic medication it is a proven method for making intense and chronic pain manageable, and a down side to that is that narcotic drugs can in fact be dependency and/or addiction forming. The presence of an addiction does not take away the fact that the pain beneath it is real. When a doctor and a patient together decide to pursue pain management via narcotics such as Vicodin they will weigh the pros and cons of such treatment. One of the cons that is weighed is the fact that a person can develop an addiction to a drug and a tolerance that will probably mean their intake will increase over time. As with any course of treatment the costs must be weighed with the benefits.
House is able to function as a result of the Vicodin to which he has become addicted. He is able to be independent in moving and living, not housebound (no pun intended) by his pain. He is able to hold down his job and do it with the skill through which he receives his notoriety. His course of pain management gives him a life and independance that many of us living with pain or other disabilities are hoping to achieve. It might not make him a happy ray of sunshine all the time, but neither does living in agonizing pain all of the time.
It is very condescending for a person who is not living in pain to assume that they know better than that person how to manager hir pain. The way that I see House’s collegues and the people who could pass for his friends treat him over his addiction and the way he manages his pain strikes too close to the way I feel most doctors and friends of those of us living in chronic pain will treat us.
Criticize the way he behaves to his subordinates. Criticize the way he treats those closest to him. But if you don’t know what it is like to live with chronic pain, don’t criticize his decisions as to how he manages his pain. If it’s not your body, frankly, it’s not your business.
Originally posted at random babble…