Understanding and Your Experience

abby jean’s post, “How Do We Understand This Experience?,” spun my brain off on a tangent about how disability issues are framed in the media and pop culture. Specifically, I read her post and then picked up a book I was in the process of reading and I came across the line “I couldn’t breathe. My heart skipped a beat.” And I thought about the fact that the author was using this line to convey a sense of tension and shock, and probably didn’t mean it literally.

Because I actually have had the experience of being unable to breathe. Of having my heart skip a beat. And my experience of that situation certainly is not like the experience described in this book. The author was using the phrase to convey a sense of numbness in response to an overwhelming situation. As a reader who has been unable to breathe, though, I just found the line slightly puzzling, and very inappropriate for a description of what the character was experiencing, since she obviously could breathe and her heart was working, or she wouldn’t be able to take the course of action she embarks on right after that line.

Here’s the thing about your heart and lungs: They’re a critical part of you, but you don’t realize it until they aren’t working. You don’t realize how noisy they are until there’s a sudden silence. And you don’t realize how important they are until suddenly they aren’t there. Then, they become the most important thing in the world, your all-consuming focus, and your priority is dealing with it, not thinking about anything else happening around you. Until, of course, you lose consciousness.

What happens when you can’t breathe is that you panic. Your panic makes the situation even worse. You are most certainly not numb, you are fighting with every fiber of your being to find air. You want to rip your chest open and shovel air into it. You are gasping like a fish out of water. You can feel your airways stubbornly remaining closed despite the fact that you are pleading with them to open. There is bubbling and creaking and hissing. You start to feel lightheaded. A rush of adrenaline surges through you, depleting your body’s oxygen resources even more quickly. Spots appear in your vision.

If you’re lucky, your rescue inhaler works.

And when your heart skips a beat? It is terrifying. You are waiting and hoping that your heart will pick up at the next beat, that the rhythm will be normal again. If you’re lucky, it does. If you’re unlucky, a cascading series of reactions is going to happen to you, and you have to hope that the people around you will know what to do, and will do it right. And will do it fast. Because, if they don’t, you die.

Which is, you know, not the same thing as being shocked by an event and feeling momentarily thrown. At all. “I couldn’t breathe. My heart skipped a beat.” is a classical rhetorical tactic used in books all over the world; it’s a shorthand which people are supposed to understand because it’s so widely used, but, in fact, for people who have lived through that, it’s a pretty poor shorthand. Would it be possible for authors to perhaps come up with a more accurate depiction of the response to surprise, stress, tension, shock, horror, etc?

Accessibility Notes: FWD/Forward: Now With Bigger Fontification!

Readers may have noted today that the appearance of the site shifted around a bit (often between loading pages, in some cases). That’s because we’re working on making the text size more accessible, as part of our overall commitment to accessibility at FWD/Forward. To that end, we’ve implemented two changes which matter to readers:

  1. There is now a “Text Size” option in the sidebar which you can use to select a text size you feel comfortable with. Your setting will save so that the site should always load at the size you like when you visit. You can resize as often as you like, and you can also resize by hitting “Ctrl+” or “Ctrl-” at any time.
  2. The default font size at FWD/Forward is now bigger.

We appreciate the input of several readers who brought the font size issue to our attention (and pointed out some weird issues which happened with various elements on the site when the site was scaled up). Never hesitate to bring up accessibility issues in Administrivia posts like this one or by email to admin or administrator @ disabledfeminists dot com!

By 18 October, 2009.    administrivia   

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.

I don’t want to talk about my gender presentation as it ties in with disability, because it also interacts with race in some painful ways I am not in a space to discuss as well as some class issues I haven’t properly examined. And, indeed, I don’t feel right defining, settling into a particular mode of presentation, at least for now. But that’s no reason you can’t talk about yours. 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?

Time and Energy, or Lack Thereof

This amazing post and its follow-up by Anna at Trouble in China (she is also a contributor here, as you may have noticed) got me thinking. [In the interest of full disclosure, my Shakesville post is in there as an example of the problematic nature of inclusiveness.]

Whenever I mention my personal blog in, say, a contributor’s or artist’s bio, I nearly always include the qualifier “sporadically updated.” Regular readers will know that this is partially my style–the dash of self-deprecation–but it masks something else. Namely: I very rarely have the energy to write a whole blog post, to respond to comments, or, hell, to comment on other blogs with wit and insight. This does not mean that I do not exist. It only means that I, quite simply, don’t always have the mental or physical energy to contribute to a medium that is, by and large, designed in favor of the non-disabled.

Before the inevitable questions of “why don’t you just quit?” arise, I keep and have kept blogging for a very specific reason: I cannot just give up. Certainly, there are better writers out there than me. There are better blogs. I have blog friends who are more articulate, more stylistically clever; some of these folks who blog more, or have more readers. Yet I know that the blogosphere is a bit wicked in that one is only as good as her or his last post (to use a worn cliche). Some of us can crank out quality posts nearly every day. Many of us cannot.

I often cannot keep up with a ‘sphere in which other voices–more able voices–have the luxury of time and actual emotional/physical energy to blog. The conspiracy theorist in me wants to chalk this up to the blogosphere’s–and to a lesser extent, the internet’s–design as yet another space where able-bodied folks can “fit,” and can be “productive” in terms of number and quality of posts. For all the talk of the internet as a utopia where one is free to not be embodied, the same old shit seems to keep coming up, along with the big ol’ Cthuluphant in the room: that the world is designed for able-bodied (and preferably white, straight, middle-class, and male) individuals. Productivity, fitting in, responding quickly: These are things that non-able-bodied folks may not be able to do, whether because of issues of time, energy, ease of access, or many other factors. What happens when one cannot type because of searing pain in her hands, wrists, arms? What happens when one finds that he is too brain-fogged to write a post, much less comment on an existing post that many other people have already commented upon? When one is confined to bed because of nausea or all-over pain that forces her to lie for hours, staring at the ceiling, doing nothing because it’s all too much? What happens is that much-needed voices are not part of the conversation. They are lost, but not because they are not there.

This is shameful. There is no other word for it.

Do I know where to begin in pursuit of a solution? No.

Does anyone? I am not sure. I would like to hope that someone does, but I remain unsure.

We’re here. You just might not know it, yet.

Originally posted at Ham.Blog

Activism suggestion: How about shade for “accessible” parking spots?

How do we start campaigning for shade over accessible parking spots?

Parked cars in the Australian sun get way too hot at the best of times, no matter how able-bodied you are. But lots of people with disabilities have further issues with temperature regulation and/or high temperatures making them sick. People with spinal injuries can have major issues keeping their body temperature stable. People with multiple sclerosis can be made very ill very suddenly by overheating. People with CFS or fibro can have similar issues with temperature regulation or overheating. Head injuries or Parkinson’s disease or stroke or diabetes or lung cancer or extensive burns scars or who take certain medications can all reduce a person’s ability to stay safe in the heat.

Assembling a scooter exposed to the baking sun in a car park is no fun at all. People in body casts or braces can’t dress down effectively for the heat. You can probably name more. This isn’t a tiny or ‘niche’ issue. This affects a lot of us.

Putting simple shadecloth or tin roofs or established-tree shades over accessible parking would be simple and inexpensive, especially given how few spots there actually are. But I regularly see lots of tree shade over the non-accessible spots, with the “accessible” spots out in the baking sun.

I expect this is almost entirely because of ignorance. How do we start getting the word out?

By 17 October, 2009.    accessibility   

Please, Tell Me More

One of the many problems which people with disabilities of all genders experience is well-meant advice. How is advice a problem? Well, it plays into a long history of infantalization of people with disabilities, and it’s a reminder to us that non-disabled people often believe that they know what’s good for us. The fact that people routinely believe that they know more than we do about our bodies is a very serious problem, because it’s this attitude which can lead to inappropriate medical treatment, institutionalization, and abuse.

All of us can relay some version of the following conversation:

Person With Disabilities: “…yes, I have [condition].”

Person Without Disabilities: “Oh, my [cousin/friend/mom/brother/etc] had that! You know what worked really well for them?”

Person With Disabilities: “…”

Person Without Disabilities: “This great medication!/A raw vegan diet!/Yoga!/Etc.”

Person With Disabilities: “Uhm, thanks.”

Person Without Disabilities: “Here, let me get you the info!”

So, here’s the thing. This kind of dialogue? Is actually not very helpful. Because people with disabilities are actually a bit more knowledgeable about their bodies, conditions, and comorbidities than random people they meet. Many people with disabilities are, in fact, working on various ways to manage their conditions. They might actually not be that pleased that they are having to share information about their personal lives for the purpose of asking for accommodation, clarifying a situation, or providing general information about themselves. Which means that they are especially displeased when people offer unsolicited medical advice.

They’ve probably tried or considered all of the things being brought up by the well meaning advice monger. And some of these things may even be working! Others may not! But, neither of these things is the business of a stranger, unless a person with disabilities specifically says “gee, I just don’t know what to do about my [condition], anyone have any advice or experience with it?” Or unless that stranger is a doctor whom the person with disabilities is consulting specifically to talk about treatment options, in the privacy of a medical practice.

There’s this idea which some non-disabled people seem to have that we are “broken” and we need to be “fixed” and we’re just not trying hard enough to fix ourselves. Or people are giving us the wrong advice. Or we don’t know how to take care of ourselves. If only someone would just tell us what to do, this logic goes, we would heal ourselves and be all better.

This same logic is used against other marginalized groups. Men sometimes tell women how feminism should be. White activists tell black activists how to address racism. Heterosexuals tell LGBQTAIs how to achieve full civil rights. In all of these cases, we have a situation in which someone in a position of power is telling someone in a position without power how they should behave. How they should access power. How they should live. What they should do.

Can one see how this might be a problem?

Can one see how this might intersect specifically with feminism?

One of the big problems with mainstream feminist dialogue around disability is the pernicious idea that people with disabilities need to be fixed, that being disabled is a horrible and tragic plight, and that people would naturally do anything to avoid becoming/stop being disabled. I wouldn’t say that this is necessarily the fault of feminism; rather, it’s the fault of the culture we believe in, because these are widely held cultural beliefs. But this is the thought process which allows mainstream feminists to only bring up disability issues in the context of reproductive rights (because, of course, no one would want a disabled baby!).

Were mainstream feminists to stop to consider their thought processes, they might see how their actions are playing into a system of oppression similar to the one used to keep women subordinate for centuries. “They’re childlike! They can’t make decisions on their own! They need guardians! They should be institutionalized!” These are all sentiments which continue to be aimed at people with disabilities, and which have a history of being used to marginalize women. Should women be using them against people with disabilities, let alone women with disabilities? I think not.

Problematic attitudes like these are one of the things we are hoping to spur people into examining with this website.

If you are currently able, when was the last time you provided unsolicited medical advice to someone upon learning that ou had a disability? If you are a person with disabilities, when was the last time you received unsolicited medical advice or other advice about how to live?

By 17 October, 2009.    autonomy, bodies, feminism, identity   

Recommended Reading for October 16, 2009

Becoming Disabled On the Job

In the months after I was hired at my first adult job — the thing I had studied for, for over ten years — my immediate supervisor informed me from behind his desk that they had hired a thoroughbred. I looked down at my mixed race hands. Oblivious, he continued, “We just have to see if you can run.” At the very beginning of my second year on the job, my disablement process started. “I see that our thoroughbred has gone lame.” In my third year on the job, when my legs were an utter mess and I was stumbling around on two canes, I sat in his office away from the desk on a comfy chair. I felt like this was no longer a professional talking to; I was a visitor on the soft chair. We were both silent for a while, reflecting (so I like to think) on the wreck that I had become.

Does XKRV cause CFS?

A bunch of people have linked me to articles about research documenting the presence of the XMRV retrovirus in CFS patients. Most of the articles are flat out stating that this will probably lead to a test and/or cure for CFS.

I wish these articles (especially ones aimed at a non-scientific audience) would clearly distinguish between correlation and causation.

How not to buy a wheelchair

6. Head to Colonial Medical Supplies. Because, to repeat the point, you have been assured by no less of an authority than Cigna that products purchased with a prescription at Colonial Medical Supplies will be covered by Cigna.

7. Be informed, kindly and regretfully, by a sales agent at Colonial Medical Supplies that in point of fact, they do not have an account with Cigna and that products, including wheelchairs, purchased at Colonial Medical Supplies, with or without a prescription, will not be covered by Cigna, and that in actual fact Cigna has never paid for any supplies purchased at Colonial Medical Supplies. “They keep sending people to us,” the agent says. “I don’t know why.”

By 16 October, 2009.    recommended reading   

It’s…. Chatterday!

We’ve decided to have a weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy. About the only content-related rule is to keep this thread for things not covered in other threads over the past few weeks.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world?

Today’s chatterday backcloth comes via Zooborns (you might expect a lot of that). This rare okapi calf was born at Lowry Park Zoo in Florida.

baby okapi, mother licking the top of its head

By 16 October, 2009.    chatterday   

Ableist Word Profile: Retarded

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.

Let’s start by looking at various definitions of the word, so we know what we’re talking about. “Retard” can be used as a verb, when it means “to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.” It can also be used as an adjective, when it means “characterized by retardation,” which in turns means “slowness or limitation in intellectual understanding and awareness, emotional development, academic progress, etc.” Finally, it can be used as a noun, when it means “a mentally retarded person.” The word is disparaging and problematic primarily when used as an adjective or noun, so I’m not concerned with people who say things like “embalming mummies was a method of retarding decomposition over time.” Similarly, I’m not concerned with phrases like “fire-retardant pajamas.” I am, though, significantly concerned with people who use the term as a noun or adjective meant to disparage and insult a person, idea, or argument.

Etymologically, the word traces back to Latin roots retardationem, and retardare, meaning “to make slow, delay, keep back, hinder.” It’s the same root as “tardy,” meaning late. This first recorded instance of using the word to mean mentally slow didn’t occur until 1895, and use of the word as a disparaging insult didn’t occur until much later, one source saying the 1960s, another citing a book from the late 1950s where a character discussing Playboy magazine said “that Hefner jazz is for retarded jockstraps.” In either event, it’s a relatively recent development that the word is used to attack and disparage others. Coincidentally (or is it?), it was around the 1950s or 60s that the American medical profession began referring to the psychological condition as ‘mental retardation.’ Before then, the condition had been termed ‘mental deficiency,’ ‘feeble mindedness,’ or simply ‘idiocy.’

In current psychiatric practice, the term “mental retardation” is a medical definition, outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM). (Sorry I can’t link to this – am referring to my own copy. To my knowledge it’s not available in whole online.) The diagnosis requires an IQ score, but that is not the sole factor — it must be accompanied by significant limitations in adaptive functioning in the areas of communication, self-care, home living, social or interpersonal skills, self-direction, functional academic skills, work, leisure, health, and/or safety. Additionally, the onset must be before age 18. The DSM notes that individuals with mental retardation usually present with impairments in adaptive functioning – difficulty coping with the normal demands of life or meeting the standards of personal independence expected of someone in their particular age group and sociocultural background. An individual’s IQ score determines with which of the four subtypes of the disorder an individual will be diagnosed: mild (55-70), moderate (35-50), severe (20-35) and profound (below 20). About 85% of individuals diagnosed with the disorder are in the “mild” category. Importantly, the DSM notes that “no specific personality and behavioral features are uniquely associated with mental retardation.”

This medical definition is certainly not what’s intended in contemporary uses of the word. If I say “I saw Zombieland and it was totally retarded,” I am not saying that I think the movie had a low IQ and I observed significant limitations in adaptive functioning. (That doesn’t even make sense.) I am saying that I thought the movie was bad, uninteresting, boring, nonsensical, repetitive, and a waste of my time and money. But for me to mean any of those things by using the word “retarded,” I and the person to whom I’m speaking have to share the assumption that being retarded is bad and that people who have mental retardation are stupid, uninteresting, and a waste of my time. Similarly, if I say “LAPD Chief Bratton’s views on homeless policy are retarded,” I mean that they are poorly informed, poorly thought out, and will be ineffective. For me to mean that, the person to whom I’m speaking has to share the assumption that people with mental retardation are poorly informed, think poorly, and will be ineffective.

The term is used so broadly in contemporary conversation that usage is no longer based primarily on assumptions about specific behaviors of people who have mental retardation – just the general assumption that retardation is bad, something to be avoided, and things, ideas or people described as retarded should be excluded from the attention of non-retarded people. At this point, the connotation is simply “that’s bad and you should ignore it.” (See the Urban Dictionary entry for the term, which describes it as meaning “bad” in literally hundreds of different ways.) And that is ableist – using a word that not only describes but is the actual medical diagnosis of a mental disability to mean “bad and ignorable.” Using the term reinforces the implicit assumption that mental disabilities are bad and that people with mental disabilities should be excluded and ignored because of their disabilities. And that affects all people with mental disabilities, not just those diagnosed with mental retardation or another developmental disability. (Although it is especially difficult for family members of people with developmental disabilities.)

In the past year or so, I’ve been making an effort to eliminate this word from my vocabulary. And it’s hard. I hadn’t realized how common a word it is until I started paying attention to it, and then I saw it absolutely everywhere, and heard it come out of my own mouth. (I stop myself, apologize, and substitute another word.) There are movies like Tropic Thunder with whole plotlines about “going full retard.” Blogs use it with regularity. I guarantee that now that you’re aware of the word, you’ll notice it in more places than you ever imagined. You might want to consider reading more about or even supporting organizations trying to increase awareness of the word and encourage people and the media to find other words, such as The R Word Campaign and the My Words Matter Pledge.

Some alternative words: bad, awful, silly, poorly reasoned, dunder-headed, illogical, ineffective, inefficient, uninteresting, etc, etc.

By 16 October, 2009.    101, Ableist Word Profile, social attitudes   

Pain and Public Spaces

The singer Martha Wainwright has a song entitled “Bleeding All Over You” that begins with the following set of lyrics:

There are days
when the cage doesn’t
seem to open very wide at all

I know it sounds negative, but some days, I can definitely relate. Maybe it’s the fact that I pass fairly regularly as able-bodied–at least in public spaces–or maybe it’s my failure at passing on my worst days that makes me relate. As much as I hate to rely upon the old trope of the person-with-disability as trapped by her own unruly body, it, like many tropes, has a sliver of truth to it.

When I am in public, I often fear that other people–more able-bodied people–can “spot” my disability. On a purely surface level, this makes no sense. Part of what makes passing such an interesting topic is the fact that, on some level, the individual who passes can hide something and look as if she or he is a part of another group, despite some (invisible) evidence that would suggest otherwise. I realize also that not everyone has the ability to pass–that passing, in itself, is a privilege. The ability to appear to be something that one is not (often as a member of a more privileged group) is not something that absolutely everyone has.

Today, I sat in a restaurant and ate a light lunch very, very slowly because my right hand was unable to hold the fork without considerable muscle pain in my tendons and wrist. This sort of thing happens rarely, but when it does, I get nervous. I become nervous because I think that my fellow diners, or students, or whomever, can pick up on my not-immediately-obvious physical difference(s) from something that is only slightly “off.” Even using a term like “off” is problematic; it implies that there is something wrong, that the person who needs to take time to do some of the things that others may take for granted needs to be fixed, somehow; that, or she needs to “fix” herself (by minimizing/masking her pain or ability or dis-ability) so that she may fit in and continue to pass.

So, are my restrained grimaces due to pain–when I am in public spaces, that is– restrained because I, deep down, want to continue passing? Is it because I would be embarrassed to show my pain around strangers? Is it out of rather ridiculous consideration(s) of the “comfort” level of strangers (ie: the social assumption that one should never make people uncomfortable, even if one is in pain)? Does a “stiff upper lip,” so to speak, actually do anyone a favor? I’d argue that the whole “keep your pain to yourself” thing might arise from a very deep fear of individuals with disabilities, but that’s probably best saved for another post.

Originally posted at Ham.Blog