Category Archives: intersectionality

Calendar Girls: Sexification Strikes Yet Another Serious Health Condition

[Author’s note: I’d been meaning to submit this piece somewhere since earlier this year, but never got around to it. I know we’re almost finished with 2009–so focusing on a charity calendar may seem a bit old meme, at least in internet time–but some of the issues that this campaign raises are, as they say, timeless.]

When the words “chronic pain condition” come to mind, not many people can name a charitable project that is trying to raise awareness while also dovetailing nicely with current mainstream standards of beauty. British former model Bianca Embley has set out to change this, at least in the UK. After a work-related accident that resulted in a diagnosis of severe fibromyalgia, Embley was left unable to work. According to her website, Embley “aim[s] to raise awareness of Fibromyalgia, specifically in the press and media, but also by supporting awareness campaigns through UK Fibromyalgia charities and organizations” with the rather risqué Polka Dot Gals 2009 Calendar [NSFW]—a 12-month compendium of artistic nude and nearly-nude portraits of female models, including one who, the website crows, has posed for such illustrious publications as Maxim and Playboy. All of the photographs make use of the organization’s official colors (black polka dots on a yellow background) in various creative ways. The calendar and its photos have garnered a fair amount of press coverage in Great Britain, in addition to quite a few celebrity endorsements. While this project’s goal is certainly one that means well, the project also brings questions of conventional female beauty, its marketability, and intended audience to the fore.

The Polka Dot Gals project seems to have an almost-exclusive focus on a very specific type of beauty that’s almost a Feminism 101 cliché: the young, white, thin, fully made-up and free of body hair paragon of femininity that is so overexposed in modern consumer culture, advertising and—dare I say it—pornography. As many a feminist activist has warned us, this type of “beauty” sells; at the same time, it is this sort of representation of female beauty that feminists have decried since the 1970s.

However, what makes this criticism more complicated is that Embley herself posed for the calendar, and though she may appear able-bodied in these images, she is not. The photographs that feature Embley have her posed [link goes to an article that appeared in The Sun; NSFW] in ways that suggest that she is able-bodied, at least in part; in one shot, she stands fully nude, her back to the camera, as she clutches a martini glass in one hand and her cane in the other. Taken out of context, this pose does not seem to allude to her condition in an obvious way—and the photograph, in fact, looks strikingly similar to many soft-core images that have come before it. The message seems to be twofold: 1) Women with chronic illnesses can still be sexy, albeit in ways that are approved and encouraged by the culturally sanctioned gold standard of sexualized, “feminine” display; and 2) This sexiness can be channeled into photographs for public display and consumption, so long as the goal is to “raise awareness” of chronic illness and disability.

A few of the poses struck by these ostensibly well-meaning calendar girls don’t seem to have much to do with the condition, or with disability, at all: former Playboy model Danni Wells, in her photo, wears both a coquettish smirk and a yellow and black polka-dot ribbon that (just barely) covers her naked body. Were it not connected with Embley’s campaign, the image could plausibly be a banner ad for a porn website. Wells’s personal stake in the campaign stems from the fact that her grandmother lives with fibromyalgia. (One might wonder how Wells’s grandmother feels about her granddaughter’s participation in the project, especially given the nature of the images that make up the calendar.)

Such images bring to mind the question of intended audience; according to the website, a “portion of the profits” will go toward raising awareness of the condition in the UK, which begs the question of who, exactly, might purchase this calendar. The fact that the calendar is full of photographs that, by and large, seem designed to appeal to a heterosexual and possibly able-bodied male audience, is obviously problematic in a feminist sense. Given that fibromyalgia is a very gender-skewed condition (the ratio of females to males with the condition—at least within the US—is nearly 10 to 1), it appears that projects which aim to raise awareness of the condition in new and interesting ways have been a long time coming. The goals of the Polka Dot Gals are admirable, and the calendar may bring some much-needed attention to a condition that lacks a public face, but the project’s uncritical reproduction of the white, attractive and (seemingly) able-bodied female body as body-on-permanent-display—no matter if the body in question is wrought with constant pain and fatigue—is still troubling.

Gender presentation, disability and intersections

A few months ago, there was a wonderful conversation in the blogosphere about gender presentation and disability. Jumping off from bfp’s what is butch? (check out the comments for some interesting disability discussion) a range of commenters and bloggers had something to say, and it evolved to have a strong disability focus. Here are extracts from some of the posts:

From cripchick’s on gender and disability:

our bodies are objects that are not supposed to belong to us and by recognizing our genders, it implies that we own our bodies, think about them, take pleasure in them. maybe this is a big jump but to me, affirming our gender also recognizes our personhood: it says we are human and have a right to not have our bodies raped, abused, sterilized, experimented on, harvested, and more…

From Wheelchair Dancer’s Butch/Femme – Crip:

My decision to wear impractical shoes is as much a consequence of me not having to walk in them as it is a decision to participate in a particular understanding of femininity. But what do you see? A sad attempt to look normal? A pair of high heels on a woman? Or something so over the top that it slides into the devotee/fetish view of disabled female sexuality? Note that this is a risk that is only present for disabled women. It’s a long way for nondisableds to go through femme to fetish. Merely presenting certain aspects of traditional femme for a queer disabled woman puts her at risk of becoming a usually straight object of the devotee community.

From Goldfish’s Gender Presentation & Disability:

Myself, I like skirts and jewellery and what my stylist friend calls romantic clothes, but I can’t be doing with discomfort and material frivolity. I can’t cope with it in terms of pain and energy levels, and I can’t afford it. So I break the rules.

How does your gender presentation interact with your disability, your sexual orientation (or lack thereof, if that’s how you frame it) and your life history?

Ill

The topic of mental illness came up again with the latest large-scale hate crime against women to make national news. It’s a nice easy narrative for George Sodini to be a psycho, to be crazy, to be mentally ill because then we don’t have to understand him. We don’t have to relate, because we’re not like that.

Thing is, we’ll never know if Sodini was mentally ill or not. We can’t tell from what he left behind, and he’s no longer around to ask. The things he wrote aren’t all that unhinged; he just took the workaday hatred of black people and women that is everywhere in our society and picked up a gun and went hunting.

And the mentally ill means violent narrative is false anyway. Mental illness correlates with an increased risk of being a victim of violent crime, not of committing it.

It’s been said before, but it bears repeating because there’s so much silence and stigma and ignorance surrounding mental illness. I’ve had kind of a lot of experience with mental illness and the mental health professions. Some of it may be triggering.

I have taken (in no particular order) Prozac, Zoloft, Paxil, Effexor, Serzone, Xanax, Ativan, Risperdal. I’ve self-medicated with alcohol a lot and smoked cannabis and taken LSD when I could get it. I have been diagnosed, at various times, with clinical depression, bipolar type I disorder, bipolar type II disorder, borderline personality disorder, post-traumatic stress disorder, gender dysphoria disorder, depressive psychosis, and paranoia. I strongly suspect that I have Asperger’s Syndrome, which would explain a lot of my symptoms, behaviors, and difficulties. I have spent time in private and public psychiatric hospitals and spent years in weekly or twice-weekly therapy. I have damaged myself in ways ranging from very small — pulling on my hair repeatedly — to very serious — shooting myself in the left hand between the third and fourth metacarpal bones. I still have PTSD-like symptoms from the last and from growing up in an abusive environment, though episodes of it get farther apart as time passes. I have had suicidal thoughts that became elaborate plans. There were times that the only thing keeping me alive was someone needed to feed the cat. I am not alive for big important reasons; I am alive for small stupid reasons. I am alive because I didn’t want whoever found me to suffer the trauma of it. I have suffered delusions and intrusive thoughts and I have always had minor hallucinations (words printed on a page are red instead of black, patterns on a floor or wall shift while I look at them). I often have trouble understanding people when they talk and try to pass it off as being hard of hearing. I’m not; I hear fine. I have trouble processing auditory information and especially picking conversation out of background noise.

You’d think I was dangerous. I’m not. Really. I’m not even dangerous to me. Damaging myself — like it is for so many people who self-harm — is a way to stay alive, to cope with trauma. I have better ways to cope now and I don’t do that any more, but sometimes when I’ve had a really hard day and I hurt a lot and the noise in my head is very bad I remember how comforting it was to draw a blade across my arm, to feel the skin part, to see the blood well up, and how it made the noise go away for a while. Maybe it makes me crazy, but that is a warm fond memory for me. And it is what I needed to do when I needed to do it. I have the same memories about smoking, and I don’t do that these days either.

I’m much better now than I was. There are long periods where I don’t need psychiatric meds at all. But I am not cured and I never will be. I will always have mental illness in my life, just as I will always have fibromyalgia and physical pain. I’m back on an SNRI now and it’s helping and that’s good, because I could feel the old illness patterns coming back. Things have been bad lately with the economy. But I’ll be okay. I know how to cope with the bad things in ways that aren’t so drastic. There are people I can ask for help. I’m not alone.

Even if I am crazy.

Ableist Word Profile: Hysterical

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Today’s word: hysterical. There are a lot of different contemporary definitions of the word (Merriam-Webster, Cambridge, Encarta), but the theme among all of them is emotions that are extreme and unmanageable. A movie described as hysterically funny is likely funnier than most and may cause you to laugh uncontrollably and snort soda out your nose. Someone at a funeral who is crying loudly and who cannot seem to stop crying would likely be described as crying hysterically. But while your mental picture of the movie-goer laughing hysterically could have been either a man or a woman, the person hysterical with grief or worry is much more likely to be a woman than a man. That’s no accident – the history of this term is very gendered.

The word itself is derived from the Latin word hystericus, meaning “of the womb,” and from the Greek word hysterikos, meaning “of the womb, suffering in the womb,” from the Greek word hystera, meaning “womb.” And they understood the uterus to be the direct cause of hysteria. As Hannah S. Decker writes, “Various ancient Greek philosophers and physicians, including Plato, had argued that the uterus is an independent entity within a woman’s body… these thinkers concluded that the uterus had an ardent desire to create children. If the womb remained empty for long after the owner’s puberty, it became unhappy and angry and began to travel through the body. In its wanderings it pressed against various bodily organs, creating “hysterical” — that is, uterus-related — symptoms.”

So when someone on a blog tells me to chill out because it sounds like I’m hysterical about an issue,  the etymological meaning is that my failure to put a baby in my uterus (which has independent will and agency inside my body) has caused it to become angry, loose itself from its mooring, and start floating around inside of my body until it bangs into my brain and starts making me unreasonably upset.

There’s also a strong historical tradition of labeling women as “hysterical” in order to silence, marginalize, or even kill them. During the Roman Catholic inquisitions, thousands of European women were tortured and burnt as witches because they were thought to show signs of hysteria. But it was during the Nineteenth Century that things really got going. Some doctors considered the force of the uterus so powerful that it might overcome the brain and cause a woman to have pathological sexual feelings, “requiring” the physicians to “medically manipulate” the genitals in order to release the woman from control of her uterus. Yes, you read that right, the doctors were obligated to fondle their patients sexually for their own medical good. Conveniently, both mental or emotional distress and any physical symptom could be an indication of a woman’s hysteria, so doctors could diagnose literally any woman as hysterical.

Once hysterical women were no longer burned at the stake, the most common treatment was to send them to bed or to an asylum to prevent any activity or thought that would inflame their hysteria. This was an extremely effective way to marginalize or silence women, as any protest that she was not hysterical would be seen as conclusive proof that the diagnosis of hysteria had been correct. This meant, practically, that any woman categorized as hysterical was forever silenced and lost all credibility.

That’s a whole big mess of etymology and history, so let’s unpack that a bit. When I am told I am hysterical, there is both 1) the implication that I am excessively or unreasonably emotional AND 2) the implication that my condition is unique to my femaleness. It’s also 3) implied that hysterical statements (or even statements from hysterical people) should be discounted and hysterical people need to change in order to participate in the discussion, or should be removed from it entirely. Now let’s look at each one of those individually.

The first is a criticism of and dismissal of my personal emotions based on the observer’s judgment on whether they conform to what “normal” or “reasonable” emotions would be for that situation. The idea of “extremeness” is built into every definition of the word, implying that there is an assumed agreed-upon “normal” range for emotions. In the past, that likely meant “emotions acceptable to white men with money.” Currently, though, the idea is strikingly parallel to current definitions of mental disabilities and mental health diagnoses in the DSM-IV, which require that a specific set of symptoms “must cause significant impairment in social, occupational, or other areas of functioning” in order for a person to meet diagnostic criteria. This means that thee idea of emotions that are outside the “normal” range of experience to the degree that they affect a person’s function is the very definition of mental illness. So the accusation of “hysteria,” with the implication that the hysterical person has abnormally extreme emotions, is very clearly an accusation of mental illness. And remember part 3 — the conclusion that a hysterical person (or a person with a mental disability, by equivalency) should be discounted in discussions because of their hysteria/disability. THAT IS ABLEIST.

But that’s not all. The other implication of the term is that this over-emotional condition is a uniquely female condition and is caused directly by female reproductive organs being sad about not having a baby. While that’s not literally how it’s meant today, it still feels like a slightly nicer way of saying “you’re just upset because it’s that time of the month,” another way to marginalize and dismiss females based explicitly on their femaleness. It’s a way to say “that sounds like something a woman would say when she’s being super woman-y and influenced by being a woman.” And again, this is assumed to be a reason to discount the information or perspective offered and to exclude that person from the conversation. THAT IS SEXIST.

And here’s where the intersectionality comes in. Hysterical is a handy dandy insta-dismissal that slams two marginalized groups at the same time – and it only works because to be related to either group is considered to make you lesser. It also means that this word, with its invocation of both ableism and sexism, is particularly sharp when aimed at women with disabilities. That’s why arguments like “It’s sexist because it makes all women sound like crazies! Who’d want to be a crazy!” are extremely problematic – not only does the word rely on both sexism and ableism, it relies on the interaction between those two axes of oppression to be a super strong word.

If we thought of people with mental disabilities as full equals, with valid feelings, thoughts and perspectives that deserved respect, then the message “you are talking like a person with a mental disability because you are a woman” would be a compliment. The message would be “you are presenting a perspective or idea that deserves respectful consideration.”

If we thought of women as full equals, with valid feelings, thoughts, and perspectives that deserved respect, then the message “you are responding with extreme emotion because you are a woman” would imply that the emotion was valid and important and deserved respectful consideration. It would likely mean that whatever idea or perspective presented with that emotion would be given more credit and consideration, not less.

It only works as an insult, as a way to dismiss and marginalize, because both groups are considered lesser. And this is a great example of why intersectionality is so important – the kyriarchy uses other marginalized groups to attack us. As we support each other and all grow stronger, the kyriarchy will be less able to use these groups against us.

Note: I use the word hysterical in some contexts (‘I was hoping Zombieland would be as hysterical as Shaun of the Dead but it totally wasn’t.’) — I think these concerns are primarily relevant when using the word to characterize an individual’s argument, ideas, emotions, or perspective. I’d be interested in learning if others find it problematic in those contexts.

Email Q&A: What About Womanists?

We’re not even a week since the roll-out, but the response so far has been tremendous. Along with the excellent discussion in comments, we’ve gotten some really great questions, like this one (which we’ve paraphrased from the original email):

Why is the name of the blog Feminists With Disabilities? Wouldn’t it be more inclusive, especially of women of color, if the name acknowledged the womanist movement? Say, Feminists and Womanists with Disabilities?

We’ve been discussing this since we got the email, and we’ve come to a consensus that for now, we aren’t comfortable using womanist in the title of our blog. None of the current group of contributors identifies as a womanist. While we aren’t all white, those of us who are women of color identify as feminist. Those of us who are white don’t want to be disrespectful of the work womanists have done and are doing and appropriate their word for their movement created specifically in response to white privilege and oppression.

We also do not want to imply that we are authorities on womanism and that anything about womanism needs to change by including “womanists” in the title. Many of us are concerned with the historical exclusion of women with disabilities from mainstream feminism, and that exclusion is the primary focus of this website.

None of this means that we don’t welcome womanists and womanists with disabilities to join us as readers, as commenters, as guest posters, and as contributors (and if someone who did identify as a womanist did join us as a contributor we would revisit this issue). We want to create a safe space for all women here, and we do not want womanists to feel excluded; they have much to add to the conversation, and we look forward to hearing from them. We hope that FWD will be a place where inclusivity and respect are the rules rather than the exceptions.

Portrayals in Pop Culture: Adam

In August the wife and I saw Adam, a romance featuring a person with Asperger’s Syndrome and a neurotypical. And it was really rather good, especially measured against other portrayals of autistic persons in popular culture. It is always astonishing how much of myself I see in depictions of people with AS, even when the wife isn’t nudging me and whispering “You so do that.”

It’s true, I do. I’m older than Adam and my (admittedly self-diagnosed but dude it really fits) version of the autism is a bit different than his. But we still share a lot of traits. Tinnitus, check. Visual distortions? Yup. Difficulty with officials and paperwork? Yes. Socially inappropriate questions? Oh deep fried shit on a stick yes. Rage? HULK MOIRA SMASH!

Of course, when I was a wee bairn, Asperger’s Syndrome as a diagnosis hadn’t made it to the U.S. yet and wouldn’t until 1992. Autism, then, meant you didn’t talk and I talked like anything. I didn’t talk like a kid. My family still tells these things as cute baby stories: I taught myself to read by the time I was three and read compulsively. If there was a cereal box on the table I had to read everything on it. I would grab my crossed ankles and rock on my back for hours at a time. The day I found out what penises were I went around the neighborhood asking everyone if they had one. I did not know how to make friends. I sort of wanted to, but I was most comfortable in structured settings like Scouts or, later, role-playing games. It was (and remains) difficult for me to look people in the eye and to touch them and I was constantly being told to do that and to shake hands firmly. I needed to look more like I was paying attention in class. I actually was paying attention as was demonstrated every time a teacher asked me a question and I answered it correctly; I just didn’t look like I was paying attention and that made them angry.

When I am very upset I stop being able to talk. I pick compulsively at my skin. I don’t interview well — I’ve never gotten a job by applying and interviewing for it. Every job I’ve ever had I’ve gotten because I started as a temp and they kept me. I’m not good with figurative speech or most kinds of humor. If I get something in my head I want to say it will come out.

So, Adam. His is the version that has more externally-directed rage. (Mine is turned mainly on myself, hence the scars and the hospitals and becoming a veritable sommellier of psych meds.) It’s done very well. Hugh Dancy spends a lot of time with reddened, tearful eyes, but he has suffered a series of very large life-changing events. He does a pretty good job portraying a person with AS without making Adam a straight-up freak. It’s clear that Beth (Rose Byrne) loves him at least partly because of (and also in spite of–I know I’ve been difficult to live with at times) the way his brain works. Adam-the-character is rather luckier than most of us; he grew up upper-middle-class in Manhattan, inherited a fair amount when his father passed (before the movie even starts, it’s not a spoiler), he gets lots of interview coaching and gets his well-paid dream job.

It’s not exactly the median experience. It can and does happen, but many more of us work a series of low-end, low-paying jobs until our social difficulties get us asked to move on (which has happened to me, though it was also tangled up with transgender issues). My résumé is a very model of stability by AS standards despite the occasional long gaps in it.

Sorry. It’s hard to talk about the movie without talking about AS in general and about me. It’s a sweet movie. It’s nice to see someone like me as something other than a socially crippled freak or the larval stage of a serial killer. It’s just the movie version of an autistic person’s life: charmed and ultimately successful (socially, financially, romantically) despite occasional setbacks.

Of course I consider my life moderately successful and I’m looking at not working at all soon. I have a family. I’m loved. I’m still poor.

There’s one thing I’d change about Adam-the-movie: After Adam-the-character’s father dies, a guy named Harlan (Frankie Faison) fills in as father figure. The role edges into Magical Negro territory. It didn’t have to be this way. Harlan, you see, is a locksmith. He drives a beat-up green van and wears a gimme cap. He is the only working class character with a significant role in the film and the only person of color with a significant role in the film. I suspect that since Adam was given a folded flag at his father’s funeral (again, not a spoiler, it’s the first scene), Harlan knew Adam’s dad in some sort of uniformed service and stayed in touch after despite Harlan being a black locksmith and Adam’s dad being a white professor at Julliard.

I’d have made Harlan one of Adam’s dad’s colleagues from Julliard. A piano instructor or something. Put him on an equal footing with regards to social and economic class with the white people, instead of the working stiff they did. I can’t tell you how many books and movies I’ve seen the same damn thing in. Hey! Creative people of America! There are rich black people! They go to college! They teach at college! Put them in movies and TV shows and books already, you crypto-racist falsely-inclusive jerks

Mental Health Services and the Welfare System

The United States cash aid welfare system underwent a major overhaul in 1995, when Congress and Clinton famously “ended welfare as we know it.” There were a whole lot of important changes made to the system then, but the most significant was the imposition of 5 year lifetime limits on welfare receipt. Under the previous system, people could receive welfare as long as they were eligible by having a child under 18 and being economically eligible. Now, even if a person has minor children as is poor enough to qualify for welfare, if that person has already received 60 months of aid, she cannot receive any more. (I use female pronouns when referring to people who are on welfare because the caseload is predominantly female, but men do receive it also.)

Even the federal government realized that if we were going to cut people off at the end of 5 years, we had to offer them some tools to move towards economic self-sufficiency and to remove any existing barriers, such as mental health problems, substance abuse issues, or domestic violence.  So, in theory, a person can use her 60 months of aid to receive treatment, medication, and therapy for a mental health problem so she is more able to work when her time limits kick in and her case aid is cut off. In theory, the group of people who are very poor and have disabilities so severe that they cannot engage in work activity are not in the welfare population because they are already on the Supplemental Security Income (SSI) program through the Social Security Administration, so welfare administrators assume that everyone on welfare will eventually be able to work and support themselves once the “barrier” has been removed.

To be clear, the concept and terminology of “barrier removal” is the welfare program’s and not mine. I don’t find it a particularly helpful or accurate framework. I do not think that a mental health problem is something like a brick wall standing between me and the workplace and if I could just dismantle the wall, I could go right into work without any problems. I think it’s unproductive to frame it as a temporary condition that can be permanently eradicated, rather than a life long disability that can be managed to various extents but will continue to need attention, treatment, and management over time. I also think framing it like this gives the welfare system tacit permission to blame people who have undergone treatment while on welfare but who are not economically self-sufficient at the end of the 5 years, whether that be because their ongoing mental health issues need ongoing management, the failure of workplaces to provide meaningful accommodations, or even the lack of jobs that provide living income wages.

Even presuming the framework in which the welfare system thinks about mental health care were a meaningful one, their administration and implementation of that framework is … problematic. To phrase it generously. I’ll primarily focus on the Los Angeles County implementation, as that’s what I’m most familiar with, but problems like this exist to some degree in most welfare programs. Keep in mind that California is considered to be very generous with our welfare benefits and progressive in our “barrier removal” methods, so this may be the best case scenario.

For this discussion, I’m also assuming that participation in the mental health system is a good and beneficial thing, which is also far from a foregone conclusion, especially given the language and cultural diversity present in the welfare population and the, um, lack of such diversity in the mental health providers. (For example, good luck finding a therapist who can talk to you in Khmer! And good luck benefiting from therapy that has to go through a translator!)

The welfare system aims to identify people would would benefit from mental health treatment and connect them with providers. And right there is where there’s a major breakdown in the system. How do we identify people who would benefit from treatment? The welfare system relies primarily on what they call “self-identification,” where a person meeting with her caseworker would be asked if she has any mental illnesses. If she discloses, she will be routed into mental health services. If not, she would not.

Obviously, self-identification is a very problematic method. First, there are significant barriers that would prevent a woman from disclosing an existing mental illness to a welfare caseworker. Among those barriers: fear that disclosure will result in a referral to child services and could result in the children being taken from the home; fear that disclosure will result in involuntary treatment and/or institutionalization and/or medication; fear that disclosing will result in losing welfare and/or food stamp and/or Medicaid benefits; fear that any personal information disclosed to a caseworker will lead to discrimination, etc. And those are just the fears specific to the welfare context – there’s also general stigma issues and everything else that makes it difficult for anyone to disclose a mental health issue, even if they’re not financially dependent on the person to whom they’re disclosing.

And that long list of problems only applies to the people who already know that what they are experiencing is considered a mental health issue, usually people who have already had some access to the mental health system and gotten a previous diagnosis. If I don’t know that the anxiety and panic I sometimes feel culd be considered a panic attack, I’m not going to disclose anything. If I don’t realize that the depression and hopelessness I feel is not how everyone feels and might be related to a mental health issue rather than my abject poverty, I’m not going to disclose anything. The relationship between welfare recipients and caseworkers is notoriously fraught with mutual distrust, so I’m certainly not going to start discussing my symptoms with the worker, and even if I did, a caseworker with no mental health training isn’t going to recognize my symptoms as a potential mental health problem.

I know very well what happens to people who have mental health issues who are unable or unwilling to self-identify to a caseworker — they’re required to comply with work requirements (in CA, 30 or 35 hours a week, it varies by state) and if they’re unable to comply because of untreated mental health problems, they’re sanctioned for failing to work and their cash grant is cut significantly. If they continue to be unable to comply, they will eventually be cut off the grant entirely and cash aid will go only to the minor children (again, in CA. In other states, the entire cash grant, including that for the kids, will be terminated.).

This doesn’t even deal with the problems with the mental health care that is offered to those identified as needing it, just illustrates how a significant number of people with mental health disabilities will not even make it that far and are likely to be penalized financially for their disability status. And in some cases, their children will be significantly penalized also – simply because the welfare system cannot figure out how to meaningfully identify and accommodate people with mental illness in the welfare system.

Outrageous pre-existing conditions

(Originally posted a month ago at three rivers fog; in the meantime, news also came out that things like acne were considered pre-existing conditions as well: consider any and all further outrage well and fully included in the subject of this post.)

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.

Transparency and Feedback

It is important to all of the contributors here at FWD that readers and commenters be able to provide feedback on the site . It’s also important to us that you can see the processes we use and know how we respond to that feedback and address it on the site. So even though we’re quite a new site, we’ve already received some valuable feedback which has caused us to make some immediate changes and wanted to share it with you in the interest of transparency.

When we announced the site going live this afternoon, we received some immediate feedback on the site’s blogroll and how it excluded an important perspective – that of women over 50. (I’m not identifying the person who provided this feedback publicly because I don’t know if they’d be comfortable with that – if they’d like to be identified, just let me know and I can swap it.) During the planning for this site, we had identified age as an important axis of diversity and made it our goal to include a range of perspectives on age and aging in our blogroll and our posts. We put together the blogroll fairly quickly and intended to continue to revise and supplement it as the site progressed.

HOWEVER – neither of those things were at all evident from the site or the blogroll, so the only way people could have known is with psychic powers. That is a failure of inclusion on our part, and we apologize for that. Many of us have experienced implicit exclusion from mainstream feminism sites on the basis of our disabilities, and sincerely regret causing that same feeling of exclusion to women over 50, bloggers exploring the issues of ageism, and anyone else who was offended or felt excluded. That was our bad, and it was bad.

Since then, we’ve been working on finding relevant sites that we can add to the blogroll and are planning to think and write more about the issues of age and how they intersect with both feminism and disability. Some of the site’s contributors are 40ish, but none are over 50 and I’m not aware that any of us focus specifically on issues of age, so that’s obviously an important perspective for us to seek out and make affirmative efforts to include on the site – not just saying “if you want to see it, write a guest post.” (Although of course if you want to write a guest post we’d love to have you!!)

This is not an appropriate time for me to talk about how ageism interacts with feminism and disability, because it’s obviously not an issue I have any business speaking on. But we will continue to be doing and research and reading and working to connect with older feminist disability bloggers to feature and include on the site.

This is what we hope the site can do – receive feedback, respond to it, and incorporate it into the site moving forward. While we certainly hope we won’t make too very many mistakes, it is inevitable that we will make some. Our committment to you is that when you raise them with us (and emailing is a great way to do it – either the author of a specific post or administrator [@] disabledfeminists [.] com for site-wide issues like this one), this is what we hope to do with feedback. If you take the time to identify an issue and highlight it for us, we owe you the respect of serious consideration of your feedback and a good faith effort to respond to it.

How Do We Understand This Experience?

This the story of the first time I really understood the degree to which intersectionality was key to understanding and addressing mental health issues.

When I was first diagnosed and the subsequent years when we all tried to figure out what was really wrong with me and what medications would allow me to function without too many problems, I had a lot of problems with anxiety. Or hypomania, or mixed state, or whatever people want to call it. But back then I had absolute faith in the power of the DSM-IV, and the medical professionals for which my parents were paying big bucks, to analyze my illness, assign it to a category, and know exactly the protocol to treat me. So back then, I thought of the episodes I was experiencing as panic attacks.

They felt like sheer terror, like my heart was pounding so hard I could feel it through my whole body, like my hands were a blur of shaking, like my muscles were pulled tight beyond their limit. I couldn’t make myself breathe right, taking a short gasp each time my heart thudded. But it was even worse inside my head, where a giant storm raged and kept me from thinking even a full thought because I was so overwhelmed with the thunder of certain and unavoidable bad! harm! doom! destruction! And after ten or fifteen minutes, the storm seemed to pass, and I could take deeper breaths, but felt battered and sore. They were awful and I hated them and resented them for appearing out of nowhere. I was ashamed that I could be so affected by whatever it was that set one off, if that could even be identified. I felt like I had no power to affect them.

Years later, when I no longer carried a bottle of tranquilizers with me just in case I had an attack, I went to a week long training up in the mountains with people from all across California. We were all young professionals with lots of degrees and post-grad degrees from US institutions. One night, I sat with some of the other women at the edge of the forest, in the kind of pitch dark you don’t get very often in California, with all our lights. It was super quiet, with no cars around for miles, and you could hear rustling of animals in the trees. Frankly, it was a little scary, so we of course decided to tell ghost stories.

One of the women told us a story about a road near her house in rural California. She said there was a section of the road where a bad car accident had taken place in the past that when you drove through, you could feel it was haunted. She told us how people from the surrounding area would drive by it to try to see the ghosts. I’m a complete skeptic about anything remotely paranormal or extraterrestrial or psychic, so I wasn’t making much of the story, and neither were some of the other women. But the woman explained that while the people who came to the spot were silly and would never get anything out of it and were wasting their time, she said she was certain that there were ghosts there.

She told us that her grandmother was from one of the indigenous tribes of Mexico and had been considered a holy woman because she could be possessed by ghosts. Her grandmother would be possessed for short episodes, around ten to fifteen minutes, and during the possession she would breathe quickly and her muscles would shake and she felt overcome by fear and evil. And the woman had inherited some of this ability through her grandmother’s bloodline and had similar episodes sometimes. She described the possession in detail and it was if she was reading my psychiatrist’s notes on my experience of a panic attack. Exactly the same – it felt like we had experienced the same thing.

I still remember the feeling I got then, when I realized that what I called a panic attack and thought of as a mental health problem to be treated with medication, she experienced as a ghostly possession and thought of as a valuable ability and a tie to her grandmother. And that neither of those definitions or perspectives or frameworks was any more valid. It was like one of the optical illusions where suddenly what I’d been seeing as a vase was also two faces in profile. That there were two realities that had been co-existing this whole time and I’d just now noticed one of them was there.

I was, and am, still overwhelmed with the implications of that realization. How would a person with her framework interact with a mental health system with the DSM categories and staggering range of medications? What would happen if she described an episode of possession to a physician or psychiatrist? And what would the difference be if I could think of it as a valuable ability instead of a debilitating problem with my brain? Would I even want or get any treatment if that were my perspective? What if my culture valued me for this? How does she handle the prevalent skepticism to ghosts and such? So many things to consider.

And then there’s the remaining question: how many other realities are there? How many other perspectives are on this experience we’ve had? How else can I think about what I experience?