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FWD/Forward: FWD (feminists with disabilities) for a way forward: Page 129

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!

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?

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?

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.”

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

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.

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