Category Archives: meta

Wikipedia and Disability

Earlier this week, Netmouse contacted me and let me know that she and some other people had pulled together a Wikipedia article on Laura Hershey, which has now passed Wiki’s notability test. She invited others to come in and edit the post for clarity and any additional information.

I find Wikipedia to be an interesting tool with regards to ableism, disability theory, and awareness building. One of our regular commenters, Julie, brought my attention a while ago to Wiki’s Disability Portal, which includes links to concepts like Ableism (which includes disableism), Pejorative Disability Terms, and a discussion of the North American ideal of People-First Language.

I also must admit to having leaned pretty darn heavily on Wikipedia during International Day of Disabled Persons, which was Friday. I spent part of the day linking people to Wiki articles on Disability Rights Activists including Laura, Gabby Brimmer, Chai Feldblum, and Paul Longmore (whose article is orphaned and needs some Wiki-edits for more link love). You can see an incomplete list of Disability Rights Activists as well.

I know I’m not alone in being aware that there are people who still insist – despite all evidence to the contrary – that disability rights activism sprung into existence the moment they were first irritated by someone saying “He, that’s ableist”. I like that editors at Wikipedia have worked hard to develop the disability portal, and that Wikipedia’s policies about editing mean that anyone can edit to expand and clarify disability-related articles.

Teeny Little Super-Meta: The things I can’t write about

And they say that the truth will set you free/but then/so will a lie

— Ani DiFranco, “Promised Land” (2003)

Yesterday, I wrote some things down, intending to use them for a post. The half-post or so that I wrote was inspired by, in large part, bullying-related suicides recently making the national news. It was difficult to write, as much of it was stuff I have kept to myself for a while — both for the sake of those I care about, and for my own mental health.

After I finished writing, I realized that I could not use any of it. Because the thought of  exposing this stuff to an audience was, and is, too painful. I want to believe that writing it down helped me in some way, because otherwise what I wrote exists as just a barely-legible scattering of meaningless words, scrawled on a piece of paper.

There are many things that I can’t write about here on FWD, or on my personal blog. Many of the things that I have experienced are so emotionally fraught that I am reluctant to even consider writing about them, mostly for fear of going into a black hole of emotions from which I may not be able to get out.

There are other reasons, too, such as protecting the people that I care about in any public retelling and/or analysis of these events. Some of these people may not have heard every part of the story, or even every story. There are also people — many of whom have a central role in these painful stories — about whom I do not care, and I would relish the opportunity to textually rip some of these people apart. It would be easy to say, “They ripped me to shreds, and now I will grate them like cheese, using my keyboard. It is payback time.”  Paradoxically, my own selfish concerns about my integrity prevents me from using my keyboard as a weapon.

The twist, of course, is that writing about these things in the “right” way — dispassionately, analytically — might help someone. Posting about things that are painful for me to think about, let alone write about, might reassure someone going through similar issues that they are not the only person who has dealt with some scary things.

And, like many people, I like the idea of helping someone get through rough times, or reassuring someone or someones that they are not alone in facing trying circumstances. Maybe that’s selfish. Maybe it’s part of human nature. Maybe it’s both.

Writing publicly about these things, on the other hand, may get me comments that I do not particularly want to face. This could not have happened. How do we know you’re not just making this up? Do you always have to write about yourself? Let’s look at this objectively. Why can’t you focus on something more important? I’m sure they didn’t mean it like that. Why can’t you just let it go? It was so long ago, anyway. We all have difficulties, what makes you so special? Who do you think you are?

According to the dichotomy of writing for an audience, I should either “get over it” and write about x or y more important topic, or excavate all of these painful things — that is, come forward with them publicly, dissect these less-than-savory experiences and my role(s) in them like a vivisected frog laden with pins to keep it from slipping out of the pan — in order to help others.

I think this dichotomy is bullshit.

But, the main thing is:  Very often, I cannot tell the whole story, for highly specific and extremely personal reasons. I might, in time, choose to reveal parts of these stories. I certainly do not have an obligation to do it all right now.

[Note: The title of this post was partially inspired by Sesame Street’s Teeny Little Super Guy short segments.]

Crowdsourcing: Graphic novels! edition

Here’s the scoop: Despite the fact that I am sort of a cartoonist and “into” graphic art, I am, sadly, not totally on the up-and-up when it comes to comics and graphic novels! So, I need recommendations from you fine FWD commenters for a project that I will be starting on rather soon. I am mostly looking for autobiographical comic/graphic novels, comics/graphic novels having to do with illness or disability, race, and/or gender and sexuality (I prefer non-fiction for these categories),  and comics/graphic novels that cover awkward situations in childhood, adolescence, or young adulthood (fictional or not).  Also, how-to books (such as Eisner’s Comics and Sequential Art, which I already own and have dog-earred to infinity) are also welcome as suggestions, as I will definitely need inspiration.

Here’s a list of stuff I already have that is in one or more of the above categories: One! Hundred! Demons! (Barry, 2002); Fun Home (Bechdel, 2006); Funny Misshapen Body (Brown, 2002); The Spiral Cage (Davison, 1992); Cancer Made Me a Shallower Person (Engelberg, 2008); Jokes and the Unconscious (Gottleib and DiMassa, 2006) Stitches (Small, 2009), American Born Chinese (Yang, 2006) [thank you to my fellow blogger Anna for reminding me of this one].

PLEASE, SUGGEST AWAY!

[Cross-posted to ham blog in a slightly different form]

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.

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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It’s Hard to Know What to Say

Sometimes I have a hard time thinking of anything to say here. In large part because it still feels, to me, that writing anything here is an act of such unimaginable daring that I should immediately take down everything I’ve already posted and get to work scrubbing cached files of any mention of my name.

I’ve noticed that it’s very difficult for me to talk about my actual experiences with disability here. The things I’ve felt, the things that posed obstacles. It’s a lot easier for me to talk about disability issues that could potentially apply to me, but which I’m not currently experiencing. The difficulties I would have were I forced to get care and treatment through government health programs in the US. The near total lack of options and assistance that would be available to me in places like Rwanda or Cambodia. But not the problems that I’m dealing with right now. Not the way stigma is affecting me this week.

Both of those kinds of writing are deeply rooted in my own experiences with disability. When I think about policy problems, I always imagine how I would be treated, how my symptoms and impairments would have prevented me from accessing the benefit in question. But when I talk about the policy, I can highlight those issues and problems (sometimes a person with depression can miss a scheduled appointment for disability-related reasons) without having to share the personal details behind it (the time I missed a class that was being held literally 20 feet away because I could not get out of bed during the midst of a major depressive episode).

I don’t trust the general discourse enough to feel safe putting my stories out there (specifically, the people who can Google, the commenters who don’t get through mod, the Tumblr reblogs). Enough of the world can still use these things as weapons that I do not want to give them any ammunition. This position is one I’ve come to through direct experience of people I’ve respected and trusted throwing things back in my face. And not just friends – I’ve had specific professional repercussions directly related to my disability status. Again, sharing more details about that would make it a more relevant and compelling story, but it would also exponentially increase my potential vulnerability to increased or future problems of the same nature.

So why is it my responsibility, as the already vulnerable person, as the PWD, to expose myself further, to hand people the tools they will then use to attack me? Is the value that PWDs add to discourse solely in sharing the intimate details of their hopes and fears, their catastrophes and failures? Is discussion based on but not including personal details inherently less powerful?

I feel like I’ve taken a major step identifying as a PWD. I am unwilling to empty myself in front of people in order to convince them to care.

Call for Submissions is out for Disability Blog Carnival #63: Relationships

The call for submissions is out for the 63rd disability blog carnival, which will be held at the Dreamwidth disability community. PWD and allies are welcome to submit.

The theme is “relationships”. Avendya explains:

This does not necessarily mean romantic relationships – how has your disability affected your relationship with your family? How do you manage balancing friendships with a limited number of spoons? How well do your coworkers deal with your disability? Basically, how does your disability impact (or not impact) your relationships with the people around you?

Submissions are due by February 20th – just leave a comment in this post to submit your article. Older essays are welcomed so long as they haven’t previous been in a Disability Blog Carnival.

Spread the word!