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Disability and feminism: one person's experience

First of all, a housekeeping note: This post is filed under "Random." Why? There isn't a category even remotely related to disability rights. This, in a very comprehensive and well-populated category system that has room for such pressing issues of intersectionality like "Hungover Feminist Weekly Report." Fix this. (Editors Note: There is now a disability rights category available for Community Posts)

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Now then. I am a feminist, and I have a disability (Asperger's syndrome, for those who are wondering. Yes, it is diagnosed. Those who would like to tell me about how this isn't a real disability and/or how I am just using it as an excuse can kindly go fuck themselves.) I believe these two things are related. Here's how.

First of all, I would not wish my disability on my worst enemy. I want to stress this. This is not a fuzzy, happy post about how my disability has helped me see things in a new light. People without it really can't grasp how bored and how lonely it makes you, and how pointless it makes your life. It's spending days talking to no one, counting hours and trying to eke out a few spare jolts of dopamine; it's feeling like a mushroom growing in some forgotten corner, whose only contribution to the world is a carbon footprint. It's walking around town and seeing tens of thousands of people and knowing that, deep down, you're not like them at all, could never relate to them, and none of it was your choice. 

But it does other things, too. When you grow up without friends, you grow up without being inducted into a lot of our society's gender roles. I never got the script that said "Hi, you're a woman, and you just got interpellated! Now you have to love scrapbooking, watching Grey's Anatomy, reading Cosmo and baking cookies with pretty pink ribbons for your man, who will be provided for you if you do exactly what we say and don't pay any attention to those who don't." This isn't to say that I don't have any of this residue on me -- you'd have to be completely cut off from all contact with anybody, ever, starting from birth -- but it's a lot of distance.

And when you have distance from something, it's easier to examine it, to study it, to be dispassionate. I wasn't given the script. All my knowledge about social interactions is put together from observations. It'll never be quite complete. It's like trying to cobble together a house with Legos and spray paint when all the others on the block are mansions. I'll always, to a degree, be "faking it." I can't be myself. Society has not granted me this luxury: this is ableism. But I digress again.

Distance from something makes it easier to examine it. It's why I'm a feminist. Looking on at social interactions from the outside, it's obvious just how prevalent all these cruelties are. (It's a deliberate choice of word, as all of the following are based on a cruel and mean-spirited premise.) It's obvious how much of social interaction is based on misogyny, racism, homophobia, transphobia, ableism--  really, hatred and mockery of anyone at all different. And the cruel irony of it all is that, the more visibility these issues receive, the more they become grist for the mill. It's how it works: people with privilege treat everyone else as their personal jokes.

I'm not immune to this at all. I'm still privileged, being heterosexual (despite the very real prospect of never being able to have a relationship) and middle-class and cisgender and able-bodied, among other things. And therein lies the problem. People who want to help people with Asperger's often talk about learning social skills, learning the social script, the missing puzzle pieces, whatever. Well, privilege is part of the script, and abusing privilege. So every day, on top of having to go out and fight with my odd voice and my near-desperation, I have this massive fucking chunk of cognitive dissonance to deal with. And I put my beliefs on hold. I don't call out sexism, partly because nobody would listen to me, partly because I am part of the problem. I am doing evil. And every day, as I learn more of the script, it gets worse.

This is my piece. Please don't yell at me for it.

Posted by katemoore - October 30, 2009, at 01:11PM | in Disability Rights , Random
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65 Comments

[0+] Author Profile Page adag87 said:

This was well said/written. I know this piece wasn't "for" me, but I think it helped me understand intersectionality a little bit better. Thank you for taking the time to write this.

[0+] Author Profile Page kandela said:

Being a social outcast for most of my life I've come at feminism in a similar way to you. I'm only a nerd though, not someone with a (long term) condition.

For much of my childhood and young adulthood I rejected large parts of the script (as you call it) because I felt that it was unfair to force people to act any way they didn't want to. As I got older though, I found I wanted to interact with the rest of society in a more meanigful way and that has meant learning and applying many social conventions.

The problem is, a large proportion of social conventions - the very same ones we need to interact with society in a positive way - are intertwined with social injustice. I do my best to analyse which conventions can be followed safely, how to modify them to suit me and to become part of the solution rather than the problem but it's not always easy.

So, I wondered, given that you are trying to learn more of the scipt, how do you go about deciding which parts of it are desirable? I'm interested in the logical processes you follow. For instance do you apply different rules in the company of different groups? Do you follow less of the script in feminist company for instance?

[0+] Author Profile Page katemoore replied to kandela :

I really want to answer this, but I've never been able to make any feminist friends. Most of the people who I'm placed in the company of are quite hostile to feminism, actually, and it's constantly frustrating.

[0+] Author Profile Page kahri said:

Thanks so much for sharing your thoughts and experience...

This especially is really making me think back on old observations from a different angle, if that makes sense:

It's obvious how much of social interaction is based on misogyny, racism, homophobia, transphobia, ableism-- really, hatred and mockery of anyone at all different.

So thanks again.

[0+] Author Profile Page Mollie said:

On one hand, I'm sure a lot of us are thinking, "it would be so cool to grow up without the pressure of all of society's gender roles pushed on us!" On the other hand, it's gotta be tough, ya know? I feel like it's easier to reject these gender roles (in the typical feminist fashion) once we've lived with them. They can either guide us to become feminists who eventually learn to reject these roles, or anti-feminists who strongly internalize them.

This post made me think a lot about my twin sister. We're 17 and she has Asperger's. She's recently been trying to get into the activism/feminism scene on a personal level, since she sees that I am heavily involved in it. I still have a lot to think about, so I'll end my comment here. Thanks for posting!!

[0+] Author Profile Page Rebecca_J said:

"It's how it works: people with privilege treat everyone else as their personal jokes."
Great way of putting it. Great article too. I have ADD and it definitely struck a chord for me.

[0+] Author Profile Page GreeL replied to Rebecca_J :

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[0+] Author Profile Page Rebecca_J replied to GreeL :

Pretty sure she didn't say ONLY people with privilege make others into their personal jokes. But thanks for coming out.

[0+] Author Profile Page GreeL replied to Rebecca_J :

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[0+] Author Profile Page kandela replied to GreeL :

Understanding kyriarchy: FAIL!

[0+] Author Profile Page Anarcha said:

I was just going to say that when I am around more progressive,anti-kyriarchal groups of people, there is almost no need for me to follow any particular script.The more progressive the group,the less need there is for me to give any room in the social interactions that are occuring to the oppressive norms of social conventions.

As someone who is non-neurotypical,and had/has a difficult time engaging socially, especially in light of my personal beliefs being so at odds with our mainstream culture, i have often sought out more progressive environments specifically to allow myself a broader range of groups to engage meaningfully with than in less sensitive environments.

[0+] Author Profile Page MK replied to Anarcha :

The more progressive the group,the less need there is for me to give any room in the social interactions that are occuring to the oppressive norms of social conventions.

I actually haven't found that to be the case. In my experience, people who I perceive as progressive have scripts, it's just that they're slightly different from mainstream society's scripts.

[0+] Author Profile Page amurph11 said:

You have a gift for wording things in a really interesting and insightful way. I really enjoyed this piece, and I hope you keep writing.

[0+] Author Profile Page megj said:

First off, thanks for the post Katemoore, I found it really thought provoking. I'm really interested in the idea of a 'script' for social interactions and I think that looking back on my own life I can see myself learning the script.

I'd like to offer an example that I think brings a little more optimism to the subject because, though it has serious problems, the script is constantly changing (both on a personal level and for society as a whole).

When I was in middle school the phrase 'that's gay' was a huge part of my classmates' vernacular. But by the time we were seniors in high school it had practically disappeared from their speech (I can only think of one individual who still used the phrase). This reflected a more powerful change in opinion- when asked, almost all of my classmates said they supported gay marriage rights, and I attended a small, rural, Catholic high school, not exactly a bastion of progressive thought. Though the school and their parents were using a script of homophobia, they changed their script to eliminate some of the problematic memes.

That's awesome, unfortunately I'm 21 and at university, and plenty of people I know still use "gay" as a synonym for bad. Very annoying.

Also it just occurred to me that the "That's awesome" in my comment might come across as sarcastic, which wasn't my intention, just so you know :)

[0+] Author Profile Page elmo said:

My experience as a social outcast (also as a nerd, not because of a condition) has been the exact polar opposite of Kendala's. Instead of seeing things from the outside, and coming to feminism as a result, I didn't come to feminism at all until later in life, because the script that you're talking about just didn't exist for me. I literally had no idea that there was a "way" that I was "supposed to be" as a woman, and that it actually mattered to other people whether I conformed to that script or not. Like katemoore and kandela, I didn't learn the script from friends, having none -- but I guess I was more cut off even than that, because I literally didn't learn that there even was a script until I was in my 20's. And I didn't care.

So with that lack of experience and understanding, and being an arrogant know-it-all (I work on it, but it's true), I believed for the longest, longest time in the strongest form of the individualist myth. That discrimination, if it existed at all, was always and solely a wrong committed by one person against another, with intention. I scoffed at ideas of structural racism and sexism; what is this "structure" of which you speak, and why should I care about it?

The last five years have been a difficult and eye-opening journey, to say the least. I'm still learning, but at least I don't think I know all the answers anymore.

[0+] Author Profile Page Marj replied to elmo :

My experience has been somewhat similar. I always knew there were certain 'guy things' and 'girl things', but I never felt compelled to follow gender roles (hell, some of them I didn't even learn existed until fairly recently). For me, I think feminism isn't a choice, it's part of who I am, because the idea that men and women shouldn't be equal never existed in my mind. I've never felt limited by my gender, and have tried anything that interested me. The idea that I should compromise myself to suit the role a woman 'should' fill never entered my mind.

I still have a lot to learn, but feminism to me is less an ideology and more an obvious fact--men and women are equal and should be treated as equals.

It's how it works: people with privilege treat everyone else as their personal jokes.

Wow. I've never seen it put so succinctly. Thank you.

I don't have Asperger's but I did have a very similar difficulty in making friends and in social interaction, especially early in life. I know now that what I struggled with was called generalized anxiety disorder, but that term wasn't in existence when I was a kid.

When I did begin to come out of my shell in my teens, I was years behind most people my age and they didn't really know how to respond to me. Adolescence is a self-conscious age with everyone, so some viewed me as creepy when I simply didn't understand those unwritten rules that govern person to person contact. I learned them, though, the hard way.

And like you, I'd never tell an empowering story of how I conquered my illness forever. I take some effective medications and have found ways over the years both with trial and error and with therapy to push back against the lies that my brain tells me. I will never be the flaming extrovert that is expected of everyone in this society and there will be times when even the most modest of face to face interactions are daunting.

For far too long, mental illness has been stigmatized and those stigmas have served as a barrier to innovation. Robert Wood Johnson Foundation’s “Rethinking Mental Health” competition offers an opportunity for new ideas outside the traditional structures to emerge. I had a friend that chose to become one of the many webcam girls just to get by after. It was fairly disappointing to hear but it's hard to judge considering the situation.

[0+] Author Profile Page Lydia Encyclopedia said:

Thank you for writing this Katemoore. As a fellow woman with Asperger Syndrome, I'm pleased that you spoke out.
I personally relish my "disability" it has given me many wonderful gifts and allowed me to wholly embrace neurodiversity.
Autism is a feminist issue in many ways. Many women on the spectrum are often left diagnosed because of an antiquated sexist viewpoint that sees AS and autism as primarily "male" mentalities (Thanks a lot, Prof. Baron-Cohen...) which leads to major depression and other problems for women left without a diagnosis. Also, Autism makes it difficult to retain employment (Only 6% of autistics are employed full time) and with poverty being largely feminized and disability-centered, we must work together to find ways to benefit women on the spectrum.
What I find most troubling about society's treatment of autistic women though, is that since we are unaware of certain social cues, it is very easy to be taken advantage of or exploited by neutotypical men.

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[0+] Author Profile Page kisekileia replied to Lydia Encyclopedia :

I agree totally with this. One little-known fact about autism diagnoses is that the male/female ratio of people diagnosed with autism spectrum disorders is much higher at higher IQ levels, and lowest in people who are profoundly intellectually disabled. What that suggests to me is that girls and women at higher IQ levels are disproportionately likely to go undiagnosed, since we can often "fake neurotypical" well enough that mental health professionals have trouble understanding that we're faking it. Of course, when people don't understand the level of effort that it takes us to appear close to neurotypical, they attribute our occasional failures at appearing neurotypical to malice, or to the grave social sin of "weirdness".

Additionally, people's perceptions and stereotypes of autism are heavily biased towards how it typically manifests itself in men. People with autism spectrum disorders do tend to be better at systematizing than empathizing, but Simon Baron-Cohen's systematizing quotient questionnaire almost exclusively assesses interest in systems from stereotypically male fields of study. I scored low on that quiz because the types of systems I'm interested in--systems for understanding how people work--were not considered. Baron-Cohen's understanding of autism as an "extreme male brain" also contributes to the low rate of diagnosis among women with AS and the difficulty that women with AS have in getting formal diagnoses.

[0+] Author Profile Page GreeL replied to kisekileia :

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[0+] Author Profile Page kisekileia replied to GreeL :

I have Asperger's. I was using the term "autism" inclusively to refer to autism spectrum disorders in general. Please don't be patronizing when you don't know who you're talking about.

[0+] Author Profile Page GreeL replied to kisekileia :

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[0+] Author Profile Page kisekileia replied to kisekileia :

I should add that it is quite common in autism-related discourse to use the term "autistic" to refer to all people on the autism spectrum (which includes Asperger's and high-functioning autism). My usage was not idiosyncratic in any way.

[0+] Author Profile Page GreeL replied to kisekileia :

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[0+] Author Profile Page kisekileia replied to GreeL :

The portion of people on the autism spectrum who are high-functioning is quite high, actually. People with Asperger's or high-functioning autism are not a small subset of people on the spectrum. Thus, yes, many people on the autism spectrum do "fake it" and go undiagnosed.

I'm done engaging with you. Based on the nature of your other replies in this discussion, one of which has already been deleted by the mods, you're just trolling anyway.

[0+] Author Profile Page kisekileia replied to kisekileia :

Sorry, correction: I thought it had already been deleted; it hasn't. My point about the general insulting nature of your comments still stands.

[0+] Author Profile Page GreeL replied to kisekileia :

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[0+] Author Profile Page GreeL replied to GreeL :

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kisekileia's first post that you replied to said "the male/female ratio of people diagnosed with autism spectrum disorders is much higher at higher IQ levels" and "girls and women at higher IQ levels are disproportionately likely to go undiagnosed, since we can often 'fake neurotypical'". Your criticism is based on a point she already accounted for more accurately and comprehensively than you have. The only reason for you to continue maintaining you know more about autism than kisekileia (an actual autistic person) is that you're being douche-y. Not to mention, the idea of "high" vs. "low" functioning is usually applied in pretty fucked up ways, and you need to stop acting like no one reading or writing here could possibly have been considered "low functioning".

And guess what, "low functioning" girls are frequently misdiagnosed too (though probably not as frequently as women with Aspbergers and other "high functioning" types, as kisekileia already said). I've personally met several families with autistic girls who didn't get an autism spectrum diagnosis until far, far later than I'd guess a similarly presenting boy would have, specifically because of misconceptions that autism is a form of hypermaleness. In addition, researchers purporting to study autistic people in general often exclude women from their study pools because of the (real or perceived) difficulty of finding enough of them. Don't you think that has a trickle-down feedback effect on diagnosis rates?

[0+] Author Profile Page kisekileia replied to Anacas :

Thanks. I don't know if you're aware of this, but almost all people with Asperger's have been bullied, and many of us have long-term trauma issues from it. I'm mostly over mine, but I still tense up and wonder what I did wrong when someone starts attacking me for no reason. It honestly helps a LOT when someone stands up for me, or stands up for anyone else with AS who is being attacked, because that breaks the script from childhood and reminds me that things are different now.

[0+] Author Profile Page GreeL replied to kisekileia :

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What you are saying is incorrect. You are the one spreading disinformation. Please stop.

[0+] Author Profile Page GreeL replied to tooimpurenangel :

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[0+] Author Profile Page katemoore replied to GreeL :

By your logic, the vast majority of criminals are caught, because their behavior is so obvious.

[0+] Author Profile Page katemoore replied to katemoore :

Note: I'm not trying to compare people with Asperger's to criminals. I'm just pointing out how utterly flawed your logic is.

[0+] Author Profile Page GreeL replied to katemoore :

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[0+] Author Profile Page kisekileia replied to GreeL :

Doesn't matter. You're still telling members of a marginalized group--people on the autism spectrum--that we have to identify ourselves in a way that is acceptable to YOU. "Lower-functioning" people are sometimes capable of blogging even if they cannot speak, and I have never heard of, say, ballastexistenz differentiating as dramatically between higher-functioning and lower-functioning autism as GreeL would prefer.

[0+] Author Profile Page kisekileia replied to GreeL :

You are also derailing, which, as a non-autistic person, you should be able to recognize and stop.

[0+] Author Profile Page femirita said:

Thanks for writing. It is so important for people to write about these things, especially this form of ableism since it's so rarly talked about. And people like me, who are privileged in a society that only values "non-disabled" people, would never realise how shitty things are for everyone around them who doesn't fit that tiny fucking mold.

And I hope no one yells at you either, I don't see any reason as to why anyone on here would.

[0+] Author Profile Page kisekileia replied to femirita :

People with Asperger's are so used to being yelled at for social mistakes they didn't know they made that we sometimes start to almost expect it.

[0+] Author Profile Page kisekileia replied to kisekileia :

*Mistakes WE didn't know WE made.

[0+] Author Profile Page kisekileia said:

Great post, Katemoore. I've done some thinking about how intersectionality comes into play within anti-oppression discourse itself, where people are often penalized heavily for social mistakes and assumed to be acting in bad faith if they break social rules. I am concerned that excessive condemnation of people who inadvertently derail, don't understand other people's perspectives, or simply aren't aware of what is and isn't appropriate behavior in anti-oppression contexts, can result in anti-oppression contexts perpetrating systemic oppression against people with autism spectrum disorders.

As I said in a critique of Derailing for Dummies on a friend's blog, "if you don't know something, you break the rules. And then if you ask questions about it once you learn that you don't know it, you break the rules again. And if you proceed to explain why you have difficulty understanding and following the rules, you break the rules a third time.

Basically, you can't win, or even be acceptable or regarded as acting in good faith, unless you already know your shit."

I realize that people who derail and the like cause major problems in anti-oppression discourse, but some discernment in judging when people are acting in bad faith is necessary to avoid oppressing autistic people.

Thank you so much for writing this.

Asperger's is pretty much a crash course in anthropology, isn't it? Trying to ascertain why people do what they do and attempting to behave accordingly is so frakkin' exhausting!

Your post is wonderfully written and very much appreciated.

[0+] Author Profile Page kisekileia replied to tooimpurenangel :

It really is! Tony Attwood, one of the best-known clinicians working with people with Asperger's syndrome, has commented that kids with Asperger's find school incredibly exhausting because they have to learn a social curriculum as well as an academic curriculum. And it's true--what most people learn instinctively about human behavior, people with Asperger's have to learn cognitively and laboriously.

[0+] Author Profile Page GreeL replied to kisekileia :

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Ahhh, Tony Attwood.
*sigh*
I've heard he is an advocate of the Cassandra Phenomenon which disappoints me so much!

I agree about finding school exhausting. He's definitely right about that.

[0+] Author Profile Page kisekileia replied to tooimpurenangel :

I've heard conflicting things about that. He's definitely associated somewhat with Maxine Aston, but I think he's stopped short of outright supporting the Cassandra phenomenon, Families of Adults Afflicted with Asperger's Syndrome, etc. I do think that the section on romantic relationships in his Complete Guide to Asperger's Syndrome, which obviously owed some debt to Aston, was by far the weakest part of the book. He pointed out problems that can happen when AS men and extremely NT women date--which seems reasonable to me. However, I think he and Aston both locate the source of the problem too much in the AS men, rather than in the NT women who deliberately entered relationships thinking they were going to change their partners even though they should probably have known better given their natural talents for dealing with people.

Oh, really? Well, that gives me SOME hope!

However, I think he and Aston both locate the source of the problem too much in the AS men, rather than in the NT women who deliberately entered relationships thinking they were going to change their partners

This just cements my belief that my diagnosis and feminism are even more closely entwined than I had ever thought.
What I mean is, the idea that people must change to conform to the oppressor's version of what should be. This whole intersectionality thing, I find it both strange and wondrous. Change a few words and what I write about Asperger's applies to feminism and vice versa.

Sorry! I got off track.

[0+] Author Profile Page kisekileia replied to tooimpurenangel :

Exactly!

[0+] Author Profile Page kisekileia replied to kisekileia :

(Sorry, I meant that you're exactly right.)

[0+] Author Profile Page Lydia Encyclopedia said:

http://www.guardian.co.uk/lifeandstyle/2009/apr/12/autism-aspergers-girls

I just remembered that article and thought it would go nicely with my earlier point. Katemoore (Or any other women on the spectrum posting here) if you would like to guest-post at my blog, http://bluestockingbutterfly.blogspot.com/

email me at Leahfirebird(at)gmail(dot)com I am always eager to sponsor differing opinions from autistic spectrum individuals.

[0+] Author Profile Page diamonds said:

"It's walking around town and seeing tens of thousands of people and knowing that, deep down, you're not like them at all, could never relate to them, and none of it was your choice."

Thank you for writing this. I have Asperger's, and most days I feel at least one step removed from everyone around me. Having said that, I really wouldn't go so far as to say that I can't relate to anyone else, but it is a relief to read a description of an experience that is similar to my own.

I never got the gender role script either, and I've given up waiting for it.

I know how you feel. I suffer from hyperlexia, which is on the same mental spectrum as Asperger's Syndrome. It's probably because of this I don't have a traditional notion of masculinity. I never saw the point of competitive sports, and I enjoy feminine products to the point where my friends think I'm a transvestite.

I feel your pain.

[0+] Author Profile Page LifeInTechnicolor said:

I have OCD and I have felt very removed from people for much of my life. I never had many friends and often feel very stunted in social growth now. It helps to know that I'm not alone in feeling this way. I also feel very similar in the fact that since I wasn't around a lot of people I grew up without much of a gender script so to say and I often find that it is much easier to step back and think about issues when you don't have a lot of the disruption of social life to cloud your vision. However, I don't feel like this is the 'price' I have to pay to think about important issues...

Thank you for opening up such an important dialogue.

[0+] Author Profile Page Quinc said:

Your description of your experience with Asperger's hit me like a ton of bricks. I was originally diagnosed as Autistic, and spent years in Special Education, even though I was later able to learn math 2 years above my grade through middle and high school, AP physics and calculus in high school. Of course the problem of throwing any kid with a problem in Special Education and calling it a day is another discussion entirely.

I'm trying to be more social, especially now that I'm at a new school. I don't offend people very often from simply missing social cues, but I still struggle try get myself out there socially. Often the only real motivation I have for interacting with others is that may plans for social development might fail.

I would feel arrogant trying to say I am immune to socialization, but ultimately I've experienced very little peer pressure, and was never indoctrinated in "guy" culture.

[0+] Author Profile Page bethrjacobs said:
[0+] Author Profile Page kisekileia replied to bethrjacobs :

Your link is broken, and referring to a person with Asperger's syndrome as "an Asperger" is not appropriate.

[0+] Author Profile Page kandela replied to kisekileia :

O for an apostrophe! This is why punctuation is important.

[0+] Author Profile Page kisekileia replied to bethrjacobs :

Sorry, I just figured out what you were trying to link to and thus figured out what you meant. Thank you for the link.

Apologies for the delay in moderation - half of the Feministing editors are traveling, so getting to a computer has been a bit difficult. Thanks for your patience.

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