Ableist Word Profile: What’s Your Damage?

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.

“What’s your damage,” “what’s your problem,” and the accompanying “what’s your childhood trauma” are, it’s true, not words. They are phrases. But they are ableist phrases, so we are including them in our Ableist Word Profile series. All of these phrases are used when someone’s behaviour appears perplexing, erratic, or unexpected, and they are often used to silence someone by dismissing or belittling them. Fortunately, they are rather outdated and are rarely seen in common language usage, but they are still worth addressing.

These ableist phrases are interesting because they use the disability-as-objectively-bad shorthand to dismiss and marginalize people, using a form of disability which many people would argue is, in fact, harmful, which is a bit of a departure from the norm, in which all disabilities are blanketed with the “bad” status. People should not be traumatized, and the experience of trauma is not a pleasant thing. However, people who have been traumatized are not bad, and using these terms is extremely hurtful to them, whether it is applied to them or applied to someone who has not experienced trauma.

Trauma is a form of invisible disability. There’s no way to tell if someone has experienced trauma unless that person openly talks about it. As a result, when terms like “what’s your childhood trauma” are used in a group setting, there’s no way to know if you are directly hurting someone with your words.

The term “what’s your damage” uses “damage” as a standin for “trauma,” referencing the idea that people who have experienced trauma are damaged, broken, and in need of fixing. “What’s your problem” is another riff on this theme. For people who have experienced trauma and are going through therapy or are coming to terms with the need for therapy, hearing a slang term like this callously tossed out is very hurtful. It marginalizes and belittles the experience of trauma, reducing it to a slang term which is used to silence someone in discussion.

These slang terms can also be very triggering for a survivor of trauma, which is something to keep in mind; once said, it cannot be taken back, and it can cause pain for someone without the speaker being aware of it.

If the speaker knows that someone has experienced trauma and uses one of these slang terms, it is especially hurtful. It implies that a response is not valid because the person is “damaged” or has a “problem” and is therefore not worthy of respect and does not need to be taken seriously. In a literal sense, it is also asking a person with disabilities to explain a disability in personal detail, which is not something which many trauma victims want to do or should do.

“What’s your damage” and similar terms are ableist phrases which most readers should find easy to eliminate because they are so rare. But elimination requires an extra step; eliminating these phrases requires people not to come up with good replacements, but to actually think about the context in which these terms are used. They are usually used as a dismissive silencing tactic, sometimes in response to heated rhetoric.

Introspection about why one feels the need to lash out to silence someone in conversation may help people come to a better word or phrase to use, such as “I understand that this conversation is upsetting, do we need to take a break” or “I respect your point of view, but I disagree” or “I think that this conversation is becoming heated and it’s time to take a step back and regroup.”

By 14 October, 2009.    101, Ableist Word Profile, language  ,  

Disability Is a Feminist Issue

FWD/Forward is all about the intersection between feminism and disability issues, so it’s worth talking about why I think (know) disability is a feminist issue. I’ll note that this post is not intended to be a comprehensive review, nor is it intended to be the final word on the matter. It’s just a brief primer. Also, fair warning, I’m a bit jived on asthma medication right now, so this post is a bit slangier and more sarcastic than my usual oeuvre.

The short version of the reason that disability is a feminist issue is that some people with disabilities are women. I know, shocking! But I’m here to tell you that it’s true. And I don’t speak from purely anecdotal evidence. According to the Centers for Disease Control*, approximately one in five American women is living with a disability. So, people, science says that some people with disabilities are also women.

So, if you identify as a feminist, presumably you are doing so because you care about women and issues which affect women. If an issue affects one in five women, it’s probably something which you should care about.

But, there’s more!

Did you know that women with disabilities are up to twice as likely to be victims of sexual assault and violence? Those certainly seem like feminist issues to me, so it seems worth examining why one in five women is at a higher risk of experiencing violence.

Did you know that people with disabilities are also twice as likely to experience poverty and unemployment? Poverty and unemployment are also considered feminist issues by many feminists, in no small part because they tend to disproportionately affect women. So, if you have conditions which already disproportionately affect women involving some women more than others, again, it seems worth exploring the causality behind that.

Did you know that the wage gap is also more severe for people with disabilities? The wage gap is often identified as a key feminist issue; it’s the thing that a lot of non-feminists think about when they hear the word “feminism.” Again, if you have a problem which is recognized as an issue which affects women and you find out that women women experience that problem at an even higher rate than ordinary women, isn’t that a feminist issue?

This is called intersectionality, people. It’s the idea that overlapping and interconnecting systems of oppression are involved pretty much anywhere you feel like looking. Now, every single feminist in the entire world does not need to address every single overlapping system of oppression which touches women. But every single feminist in the entire world does have an obligation to make sure that deliberate harm is not inflicted by ignoring intersectionality. That means that if the focus of your feminism is, say, sex positivity, you need to think about sex positivity beyond pretty white straight cis people without disabilities. Because, if you don’t, there’s a chance that you, yes, you, are hurting people with your feminism. And not just people in general, but other women!

And, I would like to point out that this is an argument so simple that even my father, who is the most un-hip person you can imagine, who scratches his head when he hears the words “intersectional feminism,” gets it. So if my dad can get it, you can get it, seeing as you are presumably interested in feminism and disability issues, since you’re reading this site, which means you’re already ahead of my father.

*Have you ever wondered why it’s called the “Centers for Disease Control,” instead of the “Center for Disease Control”? It’s because it’s the “Centers for Disease Control and Prevention,” which is somehow magically acronymed into CDC. Who knows where the P went!

By 14 October, 2009.    101, feminism, intersectionality   

This is what an activist looks like

[Hi folks! I hope you’re enjoying FWD. Thought I’d start my time here with some meta activism.]

I’m disappointed when I hear activists prescribing what other activists ought to do. I’m surprised it doesn’t all come from rich, white, etc, etc, men, and here’s why.

Traditional forms of activism are often not possible or difficult for a given individual. Is a single mother going to go to a rally for paid maternity leave when she can’t find someone to look after her kids? Is someone with chronic pain and/or fatigue going to take kindly to being told they ought to attend a protest? Is it reasonable to expect that everyone has the time, energy, resources and know-how to do research or a survey? Is someone struggling to get by going to have the money to pay to get into a event? Is the crowded, loud meeting held in a room up a flight of steps going to be accessible to everyone?

You see, if you’re claiming to be progressive, but your organising unthinkingly excludes chunks of vulnerable and oppressed people? You are not being progressive. And if you are nevertheless insisting that some other form of activism is not a proper one? You are a douche. If you’re low on resources, and really trying to include folks, that’s one thing. But if you think you have the one true way to save the world, that is quite another.

What I am suggesting is that there are a lot of forms of activism in the world, and looking down one’s nose at some of them is detrimental as well as being offensive to those of us working hard to make valuable contributions in any way we can. It goes beyond ‘well, everyone should do what they can’. It’s not even a case of ‘if you can only contribute a little, that’s fine’. It’s not even just about the privileging of particular modes of contribution. It’s this: I do not know where anyone gets off saying that what another person does to heal the world is less than proper.

Now, I sign petitions and write letters all that sort of thing. I buy badges and do bakesales, too. (These forms of activism have various levels of “proper activism” quotient attached to them. Discussion questions: How much do they tie in with what you do? How traditional do they seem to you?) I do traditional activism – sometimes. I am disabled, and it is not always physically possible to do so. I’ve never attended a rally, for instance (see meloukhia’s related post). Here is a short list of some forms of activism in which I engage that traditional thinking doesn’t call activism:

  • I call out people when they use “ism”-based language.
  • I attempt to be an ethical consumer (and frequently fail, but I’m getting better! And it’s a feature of economic privilege that this form of activism is even possible for me).
  • I try to centre marginal people/experiences/voices in any given situation.
  • I engage with the world, and learn as much as I can about what I can do to make it better.
  • I look into myself and work at unravelling oppressive ideas I have taken on as my own.
  • I assist those around me with their activism where I can and should.

We should be rethinking traditional methods of activism, because progress means rethinking the traditional to make sure we have the very best for ourselves and the world. Even where we’ve assured ourselves we’re progressive. We need to keep thinking, keep examining, not only the world but ourselves.

Because it’s not just pressuring governments that’s important, as important as it is. Central to my activism is what I do right here, right now, in my life and my communities. When it comes down to it, progress is not only in the big sweeping changes. It’s in our souls. It’s in relating to each other with kindness.

I just don’t get it when people say that blogging isn’t real activism, because it is a big deal to this activist. I’ve reached and been reached by so many people, sharing lives that would never otherwise touch! Because the Internet is not composed of individuals shouting into the void. The Internet is composed of people, and we use it to direct attention to issues and petitions and all sorts. And we take what we learn with us to the offline world. Even if this wasn’t so, there is important work to do inside our minds. We have to tease out the oppression we’ve stored in ourselves. We have to understand and learn. Blogs have given me tools to put language and frames to my experience. For instance, reading the work of my co-bloggers amandaw and Lauredhel gave me what I needed to talk about my experiences as a disabled woman, and now we’re doing activism together. You know. Writing isn’t useless. Writing is a good part of humanity’s process and progress, how we connect, how we relate to ourselves. Whether you’re writer or reader – and how often those roles intertwine in a sphere such as blogging! – writing is not just valid, but vital.

[An earlier form of this post was published at Zero at the Bone.]

Why Do I Care What the Families Think?

I have a longstanding problem with reading any comment threads on posts discussing whether people with mental disabilities should be “allowed” to decide what medication and treatment they want, if they want any at all. The threads usually have one or two comments agreeing with the post, and then quickly devolve into stories from people who knew a mentally ill person once and how disturbing or upsetting or unpleasant it was for them when the person wasn’t on medication. And that pisses me off, because the person who should be centered and prioritized in that discussion is the actual person who is taking the meds, not the people around them.

Don’t get me wrong, I understand that some people with mental disabilities who are not taking medication are unpleasant to be around. I don’t believe that they’re more likely to be dangerous or violent as a general whole, there of course will be people who are, but that’s the tiny minority. I do recognize that some may be verbally or emotionally abusive to their friends and family. I agree that nobody should be forced to endure abuse of any kind, even if it is caused by the abuser’s mental disability. BUT. The fact that some people may be abusive without medication is nowhere near good enough reason to take away any person’s right to determine their own course of treatment. If an individual person becomes abusive or violent or dangerous, that’s a different situation that should be addressed for that individual person. But a blanket decision that everyone with a mental disability must take medication is an overbroad reaction to a relatively infrequent problem that is a huge infringement on the rights and dignity of the person with the mental disability.

So I really hate seeing the families of the person with a disability, rather than the person themselves, centered in discussions about what should happen to or for the person. Given that, I bet you can imagine my reaction when I saw this headline in the New York Times:

For Families of Mentally Ill, Mixed Feelings Over Push Away From Adult Homes

Joe Newell, a police property clerk on Staten Island, would love for his brother, John, to get out of the Coney Island adult home where his television set and other property have mysteriously disappeared. But Mr. Newell remembers how the last time his brother lived on his own, he stopped taking his epilepsy medication and slipped on the ice, slicing open his nose.

Donald Navard, 71, a retired bartender, wants something better than a threadbare life of bedbugs and institutional food for his niece, Dorothy. But he still remembers how she ran away from her last apartment after a week.

And Florence Weil, a longtime activist for the mentally ill, had high hopes for her daughter, Marci Reller, when she was placed in a small group home last summer. Seven days later, Ms. Reller ran away from the home and drank a fatal cocktail of furniture polish and heart pills.

I don’t really want to get into a discussion of whether this is the best outcome for the individuals with disabilities, because I don’t think we have enough information to make that decision. And we don’t have enough information because the article focuses only on the reactions of family members (who clearly are upset about the conditions in the group homes as well). There’s a single quote from a person with a disability, even though, according to the article itself, “Unlike some patients in psychiatric hospitals, residents of adult homes are not considered dangerous to themselves or others. They are generally legally independent adults in charge of their own affairs.”

I’m glad that the families are involved in the lives of the people with disabilities and care for them. I know the help and love of my family and friends were and continue to be essential for me in living with my disability. But I am much more interested in what the people who were living in those homes and now will not be think about the whole situation than their families.

By 13 October, 2009.    autonomy, mental health   

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

Recommended Reading for October 13, 2009

In the blogs:

The Ashley Treatment Yet Again:

I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media’s pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled “Ashley Revisited: A Response to Critics” by Douglas Diekema and Norman Fost.

What Kind of Troll am I?:

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired “Not Really Autistic” meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won’t describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

Pride & Prejudice:

Then, when I was 27, I was diagnosed with a mental illness. The doctor said to me (in effect), “You have a deeply flawed mind. It’s screwed up and you’ll have to take this medicine that slows your thinking and makes you forget everything. Learn to write it down.” Talk about a slap in the face. I ripped my clothes and dumped ashes on my head and whined long and loud to God about it. “Why me? Oh Woe Poor Poor Pitiful Me!” Then He said to me (in effect) “Deal with it. It’s what you are.” So I realized that I had no right to be proud of my mind anymore. It was kind of a release, because pride is a heavy burden, even when you’re used to bearing it. All of a sudden, I *wasn’t* better than everyone else, and it became easier to be patient and kind. Which turned into something kind of nice.

Freaks, Hercules and the Hydra [long]

Much has been written about the ambiguous nature of disabled people’s exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film “Freaks” reflects that ambiguity, both from “within-story” and “external” perspectives – most of its cast were “real” circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the “freaks” performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the “Armless Wonder” drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers – who were, as reported here, viciously excluded and discriminated against at the MGM studios – as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there – see below).

Breathtaking to behold: talking back to dismissal:

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

In the news:
Go, read this! It thrills me to no end.

CDC and disabled patients: ‘We’ll work on this together’ [US]

For many women, the inability to stay still prevents them from seeking regular breast cancer screening.

But a health education program is gearing up to encourage woman with physical disabilities to seek medical attention and get regular screenings.

“Women with disabilities are getting screened at a less regular rate because there are so many barriers with going to the doctor,” Egensteiner said.

The medical equipment used to perform mammograms also can prove a barrier for women with physical limitations.

Can you collect employee medical info to combat H1N1? [US] [Note: ADA = Americans with Disabilities Act]

Employer groups have been asking the Centers for Disease Control for guidance on whether privacy rules prevent HR from surveying employees about medical info designed to control the spread of swine flu. The CDC has responded, including an approved form for requesting certain types of info.

The CDC has issued a document – “ADA-Compliant Employer Preparedness For the H1N1 Flu Virus.”

Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

[This post was originally posted at Hoyden About Town on April 27, 2009.]

There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.

Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.

They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.

The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)

This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.


Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al

The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.

The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9

In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.

Read more: Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

Guest Post: Why I didn’t celebrate “World Mental Health Day”

Everyone, please welcome our first guest poster, Arwyn of Raising My Boychick. Arwyn lives in the United States’ Pacific Northwest with The Man, the Boychick, bipolar type 2, and migraines. When the intersection of her neurology and the kyriarchal society she lives in allows, she writes feminist thoughts inspired by parenting a presumably-straight white probably-male at Raising My Boychick.

When I heard Friday night that Saturday October 10 was World Mental Health Day, I was excited: another day like Celebrate Bisexuality Day, but for us crazy folk?? Sign me up! When I Googled it, however, this is what I found:

World Health Organization:

Mental, neurological and behavioural disorders are common in all countries around the world, causing immense suffering and staggering economic and social costs. People with disorders are often subjected to social isolation, poor quality of life and higher death rates.

Bellevision Global (a parish in the United Arab Emirates — particularly look at the pictures on this site, if you are able):

Mental illness such as anxiety disorders, major depressive disorder, bipolar disorder and schizophrenia, if not properly diagnosed and treated would lead to poor work performance, family disruption, and contribute greatly to the global burden of disease.

Emax Health:

[United Nations Secretary-General Ban Ki-moon] states, “Mental disorders contribute to more disease burden and disability in developing countries than any other category of non-communicable disease, yet only a small minority of people with mental disorders in these countries have access to mental health services.”

Well ain’t that just fucking cheery. Thanks ever so much for the pathologization folks; there can never be enough support for the “those crazies = horrible miserable burden on society!!1!” meme.

To be fair, there was some good coverage as well. From the World Federation for Mental Health:

“Today, we call on all governments and partners to include measures for mental health in efforts to achieve human development and respond to humanitarian crises,” Ms. Obaid said. “Mental health is central to human dignity.”

See the difference there? How the first three talk about how those people (that’s me, gentle reader!) affect the rest of us (that’s all you normal, sane, not-crazy people; you know, the ones that matter)? How they say the reason “mental illness” needs awareness is because they (still me!) are a burden, a drag, a fiscal drain? And then how the last one is based on the radical idea that, gee, we are actually people and we matter too? Tiny difference there, don’tcha think?

If you’ve been following along, you know that I’m not in the greatest head space right now — to say the least. And yet, silly me, I still expect that when a group (or a day) purports to be helping me, to be bringing awareness to my needs, I not be dehumanized, pathologized, Other-ized, and victimized once again. I expect that it be recognized that my dis-ease, my dis-ability, arises from the intersection of my being and the kyriarchal society I live in. I expect to not be confronted with still more language and images that portray me and mine as miserable, sick, taunted, shunned, hated, and ignored. (Are we those things? Yes, in this fucked up kyriarchy, we are. But we’re also joyful, healthy, embraced, befriended, loved, and celebrated, and we damn well should be portrayed that way too. The constant portrayal of us as stigmatized contributes to our stigmatization.)

So no, I did not celebrate World Mental Health Day, because it was just World Fuck Over the “Mentally Ill” Day, which makes it different from the other 364 days a year… not at all.

Wake me up when it’s World Mad Pride Day. That, I think I can get behind.

This post is being moderated by the FWD staff.

By 13 October, 2009.    guest post, language, media and pop culture, mental health