Category Archives: i’m right here

Yeah, what *about* your free speech “rights”?

Here at FWD, it is not unusual for us to get quite a few comments in mod that question, take issue with, or outright berate our fairly rigorous comments policy and iterations thereof in varying degrees. Many of these comments are some variation of “But what about my right to express my opinion?” or “But…free speech!”

Unsurprisingly, many of the comments that try to take us to task for “prohibiting” free speech are from non-regular (and, in some cases, first-time) commenters. I try to give people — on the internet and off — the benefit of the doubt. Perhaps these folks who try to direct the conversation to their supposed right to say whatever they want “because of the First Amendment” are just unaware that many social justice-focused blogs — especially those written by people who are members of various marginalized and/or traditionally underrepresented groups — have commenting policies, usually for very specific reasons. Perhaps they think that the First Amendment entitles them to say whatever they want without also getting called on it. Perhaps they think that bigoted or hateful speech is okay, since it’s “just” on the internet and therefore cannot be taken seriously or do any “real” damage. Perhaps they think that someone needs to pay Devil’s advocate when talking to (or about) disabled feminists and other people who do not represent (or are not represented by) the majority, and they are reasonable/intellectual enough to do the job!

Here’s the thing: This website is not  run by U.S. government or employees of the U.S. government who are representing their place of work. This is a privately-owned website.  Its contributors, commenters and readers are not all from or living in the U.S. The First Amendment applies, by and large, to the United States government’s attempts to contain and/or regulate things that people say or opinions that they want to express in myriad formats. In other words, “freedom of expression” does not automatically mean that you can bust out with some bigoted crap, and then whine or call foul when the blogger or author chooses not to publish or engage with said bigoted crap, or when someone else (perhaps another commenter) calls you on this crap. Free speech is not equivalent to some sort of magical blogular free-for-all. The “free speech!!11” defense (if you want to call it that) also has the unintentional side effect of privileging US-centric notions of being able to say certain things, apparently without consequence — something that some other countries do not appear to take so lightly (see, for example, British libel laws).

From a more anecdata-ish perspective, I have noticed that many of the people, at least on the internet, who cry “free speech!!1” in defense of their supposed right to say “un-PC” things/play Devil’s advocate/et cetera are people with various kinds of privilege (white, heterosexual, abled, cis, class–to name just a few) who simply do not seem to want to give up — or, sadly even so much as critically examine — one or more of the types of unearned privilege that they have. Put simply, they just want to shut people (who oftentimes aren’t just like them for one reason or another) up using the trump card of free speech. It seems to me that the thought process might go a little something like this: Who cares if there’s a person (or people) on the other side of that computer screen? I have the right to steamroll over their lived experiences, or tell them how wrong they are ’cause “normal” people don’t feel this way, or tell them to suck it up/grow a thicker skin, or that they’re just making things up so they can be angry about stuff, or looking for stuff to get mad about, or seeing things that “aren’t there” (because if I can’t see it, it must not be there!) or use any number of derailing tactics that are not pertinent to the actual discussion at hand, or direct the discussion to my experiences and feelings as a privileged/non-marginalized person and thus re-center my own (and the majority’s) importance in a discussion that is not even about me, because it’s within my FREE SPEECH!!1 rights to do all of this and more!

Boy, that must be really fun, getting to justify making things all about you and your “rights” all of the time in spaces that are run by people who are — gasp! — different than you, and who may not have much of a safe ‘net space anyway, since the entire web is full of people who probably share at least some of your oh-so-contrarian outlook on things (not to mention some of your privilege[s]).

The free-speechers also tend to miss one important thing: If they want to spew uninformed, privilege-encrusted opinions using this excuse, and their comment gets published publicly, it is perfectly within reason for bloggers, writers and other commenters to use their free speech “rights” to respond right back.

Am J Cardiol concern-trolling: “But mobility aids will stop them EXERCISING!”

So I stumble across this at Diabetes.co.uk: Mobility Scooters Can Increase Your Risk of Developing Daibetes and Heart Disease

“O really?”, thought I, “I wonder how well-controlled that scoldy little piece of disability panic was?” So I read on.

However, recent research suggests that mobility scooters can do more harm than good by heightening the risk of diabetes and heart disease .

“More harm than good?”, thought I, “I wonder who measured that? How did they decide which effects outweighed which in the goodness vs. badness stakes?” So I read on.

Astonishingly, a study of scooter users in the U.S.A discovered that almost one in five developed diabetes after buying one to get around.

“Huh”, though I. “One in five, eh? Hm, that doesn’t sound all that different from the baseline prevalence in the population, let alone the older/ill/disabled population.” So I read on.

The research, published in the American Journal of Cardiology, highlights how multiple benefits to patients’ health from being able to get around more easily are being erased by the effects on the cardiovascular system.

“Erased?”, thought I. “Completely wiped out? Huh. Was it the people concerned who decided this, or someone else?” So I read on.

Researchers are urging doctors to consider the risks of scooter use before making recommendations to patients invest in a scooter.

“*Doubletake*”, thought I. “Doctors should consider the risks? Doctors? Not, say, people with disabilities? Just doctors? Doctors should weigh up the risks before offering any options at all? Doctors should decide?” So I read on.

[…] There have even been incidents when scooters have killed individuals.

OMG RANDOM IRRELEVANT SCOOTERPANIC!

Moving on.

They recruited 102 patients, with an average age of 68, who had obtained medical approval for a scooter and monitored their health over six years. Even though patients stated that they felt better physically and mentally, tests demonstrated that 18.7 per cent developed diabetes during the follow-up period.

“Erm”, thought I, “Right then. Sure enough, it was an older population- nearly seventy years old on average. The prevalence of diabetes in the population older than 60 in the USA is 23.1%, and that’s not people who are already ill and have other risk factors. That’s not really a surprising number.”

“I wonder,” thought I, “I wonder how that control group did, the age- and disability-matched control group, the one who didn’t get scooters at the same time?”

OH WAIT.

Yeah, there wasn’t one. No control group.

Just a group of elderly people with cardiac failure, neurologic disease, disabling arthritis, and chronic lung disease. Just a group of people with disabilities trying to eke out a life and getting used as a Lesson To All Of Us about the dangers of sloth.

The abstract is here, in the American Journal of Cardiology. Effect of Motorized Scooters on Quality of Life and Cardiovascular Risk, Brian W Zagol and Richard A. Krasuski, Volume 105, Issue 5, Pages 672-676 (1 March 2010).

This sterling little doctor-centric chastisement does contain one really useful piece of information:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

I’ll say that again, ‘cos they buried the lead. After getting a scooter, people experienced:

[…] significant physical and psychological improvements in all quality-of-life categories (p <0.001) [...]

But the authors decided to slap a big ol’ “DESPITE” before this statement about how the lives of people with disabilities were improved by appropriate mobility aids, and instead go on to list the way several laboratory parameters became “worse” over time in this group of ill elderly people. In a study with NO. CONTROL. GROUP.

We have absolutely no idea how these laboratory parameters would have fared had the people concerned not obtained mobility scooters. All we know is that their quality of life improved significantly in all domains.

What the study fails to recognise – among other things – is that the alternative to getting about on mobility aids isn’t a day of jaunty strolling; it’s immobility. The alternative to going out sitting on a scooter isn’t a doubles tennis match and a brisk swim followed by a bootscooting class; it’s sitting at home.

But the quality of life of PWD, the lack of alternatives, is dismissed by these concerned medicos as a relatively trivial aside; as just one factor for doctors to consider before deciding whether to withhold their blessing – and their financial rubber-stamp – to mobility aids:

In conclusion, interventions, such as scooters, that improve self-perceived quality of life, can have detrimental long-term effects by increasing cardiovascular risk, particularly insulin resistance. Physicians should carefully weigh such risks before approving their use, as well as ensure healthy levels of activity afterward.

Dudes. Newsflash. You’re not the ones who should be carefully weighing this hypothetical “risk”. We are. And you sitting there planning to deliberately withhold mobility aid funding to the poorest people in the population because you think they might – not will, only might – see their blood glucose tweak a few points? Not ok.

You don’t get to dismiss the importance our self-perceived quality of life (“self-perceived”? Who do you think is the best person to assess our quality of life? You?) with a parenthetical “Despite”. What is important to us is important to us; you don’t get to override that with your misinformed concern-trolling. You don’t get to decide on your own, then inform us what’s important in our lives. You don’t get to exclude us from the conversation. You don’t get to tell us which risks are worth taking.

You don’t have the moral right to immobilise us based on your imposition of your own value system on our lives. You wouldn’t even have that right if this was good research. When it’s fucked-up hand-waving? Put the journal down, and start seeing real people. The people right in front of you, who are looking for independence, the ability to shop, the ability to socialise, the ability to go to the fucking doctor, the choice to have a better life. The life you’re planning to say “no” to.

A Conversation in the Lunch Room

I was sitting in the lunch room at work with a group of co-workers, flipping through the newspapers. I came to an article on the suicide of Marie Osmond’s son, which led to the whole table discussing the incident. And it was immediately underlined for me how little most people know about mental illness and depression. Here’s a brief list of some of the questions and statements that came up during the discussion, the entirety of which I spent shrinking into myself and trying to be invisible:

  • “Is depression even a real disease?”
  • “People who commit suicide don’t really want to die – evolution wouldn’t let us have suicidal tendencies because it goes against survival.”
  • “It must be because his mom had mental health problems too.” Someone inquired if depression was hereditary and the original speaker replied “No, but being around depressed people can turn you into a depressed person.”
  • “I once knew a bipolar. She married my cousin and my mom got so mad, like you should never marry a bipolar because it’s not a good idea for them to have kids.”

Finally, a young man told a long story about his ex-girlfriend, who had experienced major depression, and how it affected her and the serious limitations it caused her. It was a great illustration of the reality of depression and the changes it can cause in day to day life. It was unfortunately concluded with a “so that’s why you can’t be in a relationship with those people, it’s just too hard.”

We’ve got a long way to go, y’all.

Trust Me

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A couple of weeks ago I asked my PCM for a referral to OB/GYN to replace the IUD that I had to surrender over the summer. She and The Guy and I have been talking for some time about the options and realities of having another child with my condition, and the answer we came up with is that we will wait for a little longer and see if I am still doing well with my current regimen.

Usually these things take weeks to schedule, but they called the next day, and I had my referral appointment on the second day. No matter what your history in the OB/GYN clinics you have to have counseling in order to get birth control through the MTF (all the ones in which I have been treated anyway), and the idea is that you get to talk to your OB/GYN about all of your birth control options, what you want from your birth control, take his or her advice, and decide on what is best for you. That is the theory, anyhow.

Some people (like me) have an idea ahead of time what they want or what is best for them. I, for example, due to my medical history and ongoing condition, am not able to use a hormonal birth control. Because of that I know that the copper IUD (ParaGuard) is the best option for me. Also because of this, I often read up on ParaGuard and IUD use in women, and try to keep abreast of any information regarding IUD usage, risks involved, etc. The IUD has such a bad reputation from so much misinformation that I feel the need to stay on top of this. Some would say this makes me a big smarty-pants-know-it-all. I say that sometimes a woman can’t trust that her doctor is going to take her word at face falue, and in the off chance that her doctor isn’t as awesome as mine she needs to be prepared. I am privileged to have information available at my fingertips.

I did not realize that my appointment would not be with my usual kick-ass OB/GYN, Dr. K, the same one who saved my fallopian tubes and life this summer and who promised to give me a shiny new IUD whenever I was ready for it. Not panicking when I saw the face of a woman I didn’t know I sat down as she introduced herself as Nurse Midwife V and told me that she had been looking over my file. Great. Maybe she was doing her background reading too, because I really tire of bringing every doctor up to speed constantly on my condition when it is right there on the computer screen for them to see. I don’t have a bunch of degrees and I can keep up with the required reading.

Before I had even the chance to say anything she told me that I was “not a candidate for an IUD” because of my ectopic pregnancy, and that she was not going to refer me for one. When I started to say that I understood that there were some risks she cut me off and told me that my pap was also past due and kept talking. I tried to assert myself past her obsession with people rooting around in my vagina, to let her know that I was aware that there were risks involved with the IUD, but that I knew that not only was what happened to me rare, but that I knew it was rare that it might happen again. But she wasn’t having any of that. She kept right on talking like I wasn’t even there.

I told her that my regular doctor had already said I was fine to have one. She responded by saying that it usually took weeks to get in to see him, as if this was supposed to deter me somehow. I also tried asking if the new ACOG regulations had been implemented yet, thinking this might distract her and get me closer to my goal (also, I am in the lag area none of them know what to do with, being 29, soon to be 30) and all she would say was that my pap was past due. Is it? I don’t know. I had a normal one in late 2008. I am in a mutually monogamous relationship…

When I left I told the front desk that I would no longer allow Nurse Midwife V to treat me. I am currently in the process of filing a formal complaint against her. What shouldn’t have happened here was having everyone from the desk staff to the NCOIC (that’s Non-commissioned officer in charge) tell me how nice Nurse Midwife V is and how everyone likes her so much, and that she is well known for being very good at what she does. That might well be true, great. My experience is that she was condescending and rude, and didn’t help me with my medical needs to my satisfaction. I think that people forget that sometimes, that doctors and nurses are also here to provide a service for us. I have a medical need, and she didn’t meet it. I shouldn’t have to settle for that. No matter how nice and great she is to work with. I also shouldn’t have my experience erased and dismissed by everyone in place to help me when things go wrong for me. That is not good patient advocacy.

I am rather privileged, however, in that I was able to make another appointment, and I saw Dr. K the next day. Had I been someone who had to drive a long way to a clinic, I might not have been able to. Had I had to pay out of pocket for this visit, or if my insurance limited the amount of OB/GYN visits or birth control counselings I was allowed per year, I would not have been able to. Had the travel cost me money I did not have, this would not have been possible. Had I not had the type of job I do where I set my own hours, I might have had to miss work. These are the kinds of things that women face when they come up against providers like Nurse Midwife V, providers who don’t want to listen to women, who won’t talk to women about their own bodies and medical histories. Providers who don’t trust women to be actively involved in their medical processes. Providers who can’t be bothered to involved women in the partnership that should be their own medical care, especially when it comes to their reproductive health. As it was, having to go back a second time was already taxing on my spoons, and stressful, because now I have be on my game. Suddenly I have to come in educated on something that my provider should have known the first time.

Thanks to meloukhia’s indominatable Google-fu I took in the information I was looking for, backing up what I had already said, that an ectopic pregnancy did not preclude me from having an IUD (or, that a previous ectopic pregnancy was not a contraindication for an IUD). Dr. K was impressed that I was so prepared. He told me that he had heard that information, but he himself had been so busy that he hadn’t had time to read any of the journals for himself. He told The Guy (who went with me this time, because they like to banter back and forth in Korean) that I should come in from time to time to keep him updated on current women’s health, and said he wished more people came to him so informed. He said that whomever told me that I couldn’t have an IUD was wrong. I was prepared, but I shouldn’t have had to come in as if I was fighting a war.

Two weeks later I have my IUD.

Nurse Midwife V didn’t care to ask why, after having one IUD failure (as rare as they are, b/c they are pretty much the most effective form of reversible birth control out there, with a fail rate of less than one percent), I would want another IUD. She didn’t bother to find out anything else in my medical history that might affect my decision to make that very personal choice about birth control, like that I am on medication that might have contraindications with hormonal birth control, or that previous specialists had determined that hormonal birth control is a migraine trigger for me. She simply asserted her own opinion (as wrong as it turned out to be) and called it a day. But all of that information is in my medical record if she cared to look. The same record she said she reviewed when she made her initial judgment.

And now, I can’t trust her.

Originally posted at random babble…

Who Killed Civil Discourse? Evelyn Evelyn, Marginalization, and Internet Discussion

Hello. I am Annaham (yes, I have a name). I am the person who posted a critique of Evelyn Evelyn on this website, which kicked off something of an internet controversy. For those who’ve just joined us, I made a post about Amanda Palmer and Jason Webley’s side project Evelyn Evelyn, Lauredhel made another post soon after, and things got a little out-of-control, to say the least. Because my post was part of this whole storm of various substances — both gross and not — I feel some responsibility to share my reaction to what’s gone down thus far.

I’d like to take a moment to talk about some basic principles of anti-oppression activism and social justice work that intersect with the work we do here at FWD, as some very specific structural issues and contexts are absolutely relevant in this discussion. Often, marginalized people are encouraged and expected to be sensitive and accommodating to the attitudes and prejudices of the dominant culture and to those of less-marginalized (ie: more privileged) people. However, this sensitivity and accommodation usually does not run both ways. Marginalized people, if they criticize something that (for example) leaves them out or makes them feel awful, are often told that they are being overly sensitive or overemotional, that they just misunderstand intent, that they are exaggerating, or that their tone is not polite enough. They are then expected to modify their behavior — and their self-expression —  to fit with the norms and values of those who are more privileged.

What the less-privileged have to say is usually not accorded much importance, critical thought, or respect, and yet they are supposed to prioritize, be patient with, and generally assign more importance to views, values and norms that are not their own. People in marginalized communities are often expected to educate the more privileged majority. They may be expected to patiently explain basic concepts, sometimes repeatedly. And if those with more privilege decide that they do not agree (with the less-privileged group’s tone, focus, or any number of other things other than the actual argument that is being made), those with less privilege are told, with varying degrees of subtlety, to shut the fuck up.

All the while, the perspectives, attitudes, norms and values of those with more privilege are made neutral. The power dynamics are rendered invisible, because that’s just the way things are, so there’s no point in trying to change any of it. Why are you so angry?  You’re just looking for things to get mad about. You just like being offended. Why can’t you focus on other/more important things? It wasn’t meant that way. You need to hold your tongue until you’ve done x, y and z. Quit taking it personally. You’re ruining everyone’s good time. Stop trying to make everyone pay attention to your pet issue, because it doesn’t affect anyone other than you. Your demands are unreasonable. Stop complaining. Shut up.

And when things don’t go entirely smoothly (which happens often), those not in a position of privilege are often blamed for it: Well, what did you expect, using that tone? You’re the one who brought it up; you’re the one who rocked the boat.

Unfortunately, these tactics are extremely common when it comes folks’ objections against many sorts of media and pop culture critique and/or backlash against critical engagement with cultural works. In other words: These are not new patterns.

I am definitely not saying that everyone has to agree with the critiques that I and others have made regarding Evelyn Evelyn; I am not suggesting that ideological lockstep is a worthy end-goal. What I am saying is that the humanity of marginalized people — those who have traditionally been left out, and who are often on the receiving end of justifications for said exclusion(s) — is not up for debate. The humanity of the participants in this discussion — that of the creators/artists, fans, and those of us who have come forward with critiques — is similarly not up for debate. What I posted, and what I am posting here, was (and is) my take on the matter. I do not, nor do I want to, claim to speak for all PWDs, or all disabled feminists, or all fans of AfP and/or Jason Webley who are also disabled or feminists, or both. We all have our different takes on Evelyn Evelyn and how things have unfolded, and I think it is a good sign that so much discussion has come from this.

As I have stated here on FWD and elsewhere, I am a fan of AfP and have been for a number of years. Many of the people who have raised concerns about Evelyn Evelyn are fans, potential fans, or former fans (and there have been solid points raised by non-fans, too). Dreamwidth’s Anti-Oppression Linkspam community has, at present, four roundups collecting posts on the matter from around the web.  I suspect that many of us who have posted on the Evelyn Evelyn project with a critical eye are not raising these concerns simply to bug or irritate Amanda and Jason, or their fans. However, there are quite a few people who seem eager to dismiss those of us with legitimate concerns as “haters” who just don’t understand art. The hostile messages from “haters” that Amanda has received are not legitimate critiques. These are personal attacks, not arguments of substance.

I almost feel like it should go without saying that I do not support people making these attacks on Amanda, but just to make it very clear: I am very much against people using this controversy — and the complex issues raised — as a bandwagon upon which they can leap to make personal attacks and/or comments about Amanda’s personal life or who she is. Unfortunately for those of us who have been trying to bring attention to Evelyn Evelyn-related issues and seriously discuss them, the “haters” are distracting from these same issues (and are apparently effective at it). I have also heard that people are making threats of physical violence against Amanda. That is not okay. It is never, ever acceptable to make threats of violence against anyone, regardless of your disagreement. That is basic human decency. It is truly disheartening to me, and to the other FWD contributors, that some are using this very difficult situation as an excuse to make horrific threats. We fiercely condemn these attacks.

One of the comments I received was from someone who, as far as I can tell, thought that my post seemed “insincere,” with a bonus implication that I was and am making other PWDs look bad “in the eyes of the abled.” Comments of this sort are often aimed at members of marginalized groups who are expected speak for everyone in their group when confronted; it basically boils down to “You are making other [disabled people] look bad.” I have to wonder why this same thing was not said to the AfP fans who found it necessary to show up here to derail, break out tone arguments,  tell me and my fellow contributors that we are crazy and/or should shut up, and who dismissed us on Twitter as just bitching about the project. It’s interesting, and rather telling, that some fans have used these tactics against me, my fellow FWD contributors, and other people who have critiqued the project, but could not (or did not want to) step back and consider their own behavior.

We were, in various other places around the web, called “retarded,” “angry bloggers,” had the legitimacy of our contributors’ disabilities questioned, and (trigger warning) threatened with rape (link goes to a screencap of a comment left on Amanda’s blog) — among many, many other things. In the comments thread to my original post, I was told that I need to focus on more important issues, that I was blowing things out of proportion, that I was censoring people and/or trampling on their free speech rights by laying out guidelines that specifically told potential commenters  to not leave derailing comments,  and that intent should excuse offensiveness. Eventually, I lost my patience.

There were also quite a few personal-attack comments left in the moderation queue; for obvious reasons, these were not published. These attacking comments were a significant part of why I closed comments on the post, though I did not explain that in my final comment. My decision was not about “censoring” what anyone had to say, or infringing upon “free speech” rights (this is a private website — one that has contributors, commenters and readers who are not only from the U.S.), or only about the fact that I lost my patience after having explained certain concepts over and over again; I and my fellow contributors simply could not deal with the personal attacks, threats, and violent language being left in the mod queue anymore.

Here is just a sampling of some of these unpublished comments from the mod queue (possible trigger warning):

“What’s the matter with you?”

“cant handle it? then just fucking die!”

“fuck u die slow nigga!”

“ONOEZ SOMEONE WANTED TO SMACK SOMEONE SUCH VIOLENCE!!! Typical retarded comment on an idiotic, stupid, moronic, weak, and lame blog. Fucking oversensitive twits.”

I think there is something analogous here to some of the more hateful comments that Amanda received on Twitter and elsewhere, but that is a bit of a tangent.

Going through the mod queue for that post was not an experience that I would want anyone to have. I could talk about the fact that it got to the point where it exhausted me to look at the comments; about the extreme anxiety and emotional hurt I felt while reading some of the comments that attacked me as an individual and/or questioned my mental health status; about how it feels to notice that your physical pain level — already there as a result of a chronic pain condition — goes up a few notches as you read criticism(s) directed not at your argument, but at you. I have a feeling that were I to discuss this in depth, some would likely construe it as “ANGRY BLOGGER BLAMES AMANDA PALMER FANS FOR HER OWN PAIN” or accuse me of using my disability as an excuse for being “too sensitive.” I get more than enough of that outside of the blogosphere.

I need a break from having attempted to be civil and polite and explain very basic concepts to a select few people who have no interest in substantially engaging with me or with others who have raised concerns about Evelyn Evelyn.  Simply put, I need some time to recharge my politeness batteries, as well as my hope that some people — and I include many of Amanda’s fans in this category  — do want to listen, learn and discuss without derailing or attacking. I wish I could address every critique that’s come our way, but I am pretty worn out (and I suspect that many of you — disabled and not — know the feeling).

In the interest of full disclosure, I should mention that Jason and I have been communicating via e-mail — he emailed me shortly after my other post went live — and discussing many of these issues in more detail; for that, and for his willingness to engage, listen, and consider the critiques that have come up, I thank him.

I wish Amanda and Jason success with their endeavors; I do not wish to shut either of them up or, worse, endorse that Evelyn Evelyn not go forward at all. There is, as I have said, quite a bit of difference between critiquing a portion of someone’s work and wanting to shut them up or silence them; I have aimed for the former. I ask, however, that they engage critically with and take seriously the numerous points that have been brought up, both about (trigger warnings apply to the first two links) specific aspects of the project and the response to critiques so far. Taking on such huge issues will doubtlessly be a difficult and ongoing process. Of course, Amanda and Jason will probably interpret all of this in different ways. What happens next does not have to be “perfect” — nor 100% Annaham-approved (because that would be unrealistic and silly), but it would be fantastic for these two very talented musicians and performers to bridge the gaps between their good intentions and what actually shows up onstage and on the album.

What are the ultimate lessons here? What can people on all sides of this discussion take away? Right now, I don’t know, and for the moment, that is okay with me. I still believe that better things are possible. I refuse to give up that hope.

[Special thanks to meloukhia for ou’s help in putting together links and other material for this post.]

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What Is ‘splainin’? And Why Should I Care?

‘splainin'[1. See also: ‘splaining, ‘splain, ‘splainer, etc.], a contraction of “explaining,” is a term which has been popping up a lot in the social justice sphere lately, including on this very website, and I think it’s worth exploring a bit. In the first place, not everyone might be clear on what is meant when people refer to ‘splainin’, and in the second, there’s a phenomenon around it which is critically important.

In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.

Writing at Shapely Prose about mansplainers, fillyjonk said:

Here’s a thing about mansplaining and why I care a lot about it: it is annoying, and frustrating, and insulting, and deeply rooted in institutionalized sexism, and often profoundly harmful to women. We talk about all of that. What we don’t always talk about is how easily it shades into gaslighting: your reality is false, my reality is true.The biggest mansplainer I’ve known made me doubt my sanity for years; I am still recovering. This isn’t just a supremely sexist and problematic internet habit. It can be a psychologically violent act.

There are a few key components of ‘splainin’. The first is that the ‘splainer usually does not share the experience of the person being ‘splained to, or is in a place of denial about shared experience. For example, a white person informing a person of colour that ou doesn’t understand ou own lived experience (melaninsplainin’), an able person telling a person with disabilities to “lighten up, it’s just humour” (ablesplainin’), and a man informing a woman that her concerns about reproductive rights are baseless (mansplainin‘). Occasionally, professional credentials may be dragged out. “I’m a police officer, and no police officer would ever harass someone for being while Black!” “I’m a doctor, and there’s no way that kind of behaviour is acceptable, you must be leaving something out of the story!” “I work for a women’s rights publication, so I am very well informed about women’s rights issues!”

The second is the fact that the ‘splainer not only passionately believes that someone’s lived experiences are wrong, but that they need to be corrected, that there are right and wrong answers when it comes to someone’s life. This often involves an active erasure and denial: “I’m being discriminated against.” “No you’re not!”

Another troubling component of ‘splainin’ is that it’s viewed as acceptable to override expressed wishes of people involved in the conversation “just to make this one point.” Since the people in the conversation are very accustomed to dynamics in which they are told that their voices do not matter and should be silenced, and they may view the space they are in as one of the few places where they are not being oppressed, this attitude can generate a great deal of hostility. This is compounded when the ‘splainer becomes defensive after encountering pushback, and it feeds a very vicious cycle.

There’s an “outsider knows best” aspect to ‘splainin’ which is extremely troubling, especially when it is used in social justice communities to attempt to shut down voices. When people go to an effort to center voices which are often silenced, to empower people to speak up about their lived experience, to create insider conversations about their own communities, and outsiders come in to ‘splain, it can be very damaging. ‘splainers are often very upset by the suggestion that some conversations are not about them, and that some conversations need to occur from a place of shared experience, and, while open to members of the public who wish to view, are not open to everyone who wishes to speak. This upset can sometimes manifest in very ugly ways.

“My belief,” the ‘splainer says, “outweighs your experience. What I think matters more than the information you are presenting me with about what is actually lived.”

As for why you should care about ‘splainin’, well, I hope it’s evident after reading this. (And I want to note that this post is not a commentary on anything going on here, it’s just a definition and exploration of a term we use a lot so that everyone can be on the same page. Nor is it a gibe aimed at particular people or sites; it’s really just a discussion of a general issue.)

Why I don’t think it’s funny to use Limbaugh’s drug abuse as a punchline.

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at three rivers fog.)

I’d Rather Be Dead

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

Law & Order: “Dignity”, Worth, and the Medical Model of Disability

As a feminist, I am pro-choice. Abortion should be safe, legal, and accessible.

As a feminist, I look at more than whether single, individual women have access to abortion. There is a much broader reproductive justice framework that must be scrutinised, critiqued and repaired so that all women have access to informed, supported reproductive choices.

Women who have been denied informed, supported reproductive choices in the past include more than the wealthy, non-disabled white women who dominate pro-choice conversations. Marginalised groups are as likely to be fighting for their right to reproduce as their right not to – people of colour, trans people, lesbians, and of course women with disabilities, who have been denied sex education and forcibly subjected to contraception and sterilisation for centuries.

To that list of marginalised groups, of people who are often denied truly informed and supported choices, we can perhaps add – people pregnant with fetuses who may have a prenatal diagnosis of a disability.

As a feminist, I believe that we can have the abortion-rights conversation without marginalising, othering, and disparaging people with disabilities. I believe we can talk about abortion within that broader framework of reproductive justice, and that we can confront the ableism that creeps into some abortion-rights conversations head-on. This takes effort; we must think clearly, write carefully, read closely.

Yes, some forced-birthers will try to appropriate our words for their own ends. We need to remember that they are responsible for their own misreadings and misrepresentations, not us. We need to not let their twisted, misogynist agendas control what we say. They must not stop us from speaking out.

Law & Order, “Dignity”

So, guess what I did today? I swallowed my intense dislike of popular TV crimeporn show Law & Order, and watched episode 20×05, “Dignity”, in which a bloke murders a doctor who provides abortion services, to “save” his daughter’s fetus, diagnosed prenatally with Ehlers Danlos syndrome.

Before we start, a little background on Ehlers Danlos syndrome (EDS). EDS is not one condition; it is a heterogeneous group of conditions caused by differences in genes coding for collagen proteins. Collagen is a key ingredient in all connective tissue, including skin and ligaments. The commonest EDS types manifest primarily as joint hypermobility or as very elastic skin. EDS often goes undiagnosed until adulthood, or completely undiagnosed throughout life.

There is a very, very rare variety of EDS called dermatosparaxis which involvs fragile, floppy skin and easy bruising; there have been ten published case reports of this variety worldwide. Within that group, the severity is still heterogeneous – check out this blog Sense and Disability, by a woman with dermatosparaxis who has studied at Oxford and backpacked through Europe.

Let’s have a look at the episode. I’m not going to go into a detailed recap; you can check one out here at All Things Law & Order: “Law & Order “Dignity” Recap & Review”. The case is a ripped-from-the-headlines story with many details closely resembling the terroristic murder of Dr George Tiller, one of a half-handful of late term abortion providers in the USA. The show adds a number of details that appear designed to showcase forced-birther ideas, such as the invented detail that the slain doctor had in the past murdered a live newborn. The murderer’s defence argument centres around the idea that he is trying to save a fetus from the abortion that his daughter has scheduled.

The fetus in question has apparently been diagnosed with Ehlers Danlos syndrome (EDS). At first, oddly, we’re told that it has “Fragile Skin Disease”, which typically refers to a completely different set of keratin-related conditions, epidermolysis bullosa. The show does not elaborate on how the EDS was supposedly detected (prenatal gene testing is not routine), or the fact that EDS is heterogeneous and that people with EDS vary widely in phenotype, or, well, any other facts, really. We just get this:

[clips, transcripts and a lot more discussion are below the cut]

Continue reading Law & Order: “Dignity”, Worth, and the Medical Model of Disability

Scooterblogging: I’m Right Here

(This was originally posted at Hoyden About Town on July 29, 2009, and has been edited for FWD)

I got a scooter just a few months ago. It’s red, and shiny, and its name is Smaug. It’s made my life vastly better. No longer do I struggle to walk the block to school pickup, and I can zip up to post a letter or get some library books or go to a shop without getting into the car then plodding along out of the carpark. My life is still very limited based on inability to cope with sitting up, noises, lights, interactions for any length of time; but the world’s accessibility has still taken a big jump for me.

Within a week or two of getting the scooter, which was within perhaps 2-3 hours of scootertime, I had my first Talking-to-my-companion-and-not-me experience.

It was a couple of weeks ago. The Lad (aged 6) and I were meandering down a suburban footpath on the way back from the postbox. We were chatting and laughing about life, and he was resting his hand on my armrest, which helps stop him getting his feet tangled under my wheels.

A woman was walking by the other way. She looked at the Lad, and said in a sickly sweet voice,

“Oh, you’re a good boy. A good, GOOD boy.”

And kept walking.

…yeah.