Evelyn Evelyn: Ableism Ableism?

Let’s get something out of the way: I say this out of love and respect. I say this as a fellow artist (albeit an unknown one). I also very much doubt that the people involved in this project have created it with any bad intentions. That said, however, intentions don’t equal a free pass for an end result, particularly if the end result is problematic.

I am conflicted, to put it mildly, about this latest project in which singer and pianist Amanda Palmer has involved herself (full disclosure: I am a fan of Palmer’s music). For those who need a refresher, she and fellow musician Jason Webley are performing together as Evelyn Evelyn, a fictional set of conjoined twins and former circus performers with an elaborate past who reside in (of course!) Walla Walla, Washington. The group’s upcoming self-titled album seems to be getting quite a bit of press in the indie world. Part of the press release reads as follows:

Rather than being limited by their unique physical condition, the Evelyn sisters prove that two heads are indeed better than one. Audiences will marvel at the twins as they dexterously perform their original compositions on piano, guitar, ukulele, accordion and even drums.

Ah, yes! It’s the “overcoming disability” trope, with a heaping side of totally unexpected and not-at-all-stereotypical circus-freakdom. Might Evelyn Evelyn be musical Supercrips?

And then:

Unsatisfied with the grind of circus life, at the age of nineteen the twins decided to explore a solo career. It was then that they were discovered by Amanda Palmer and Jason Webley, who heard the twins’ music on MySpace. Webley and Palmer encouraged the twins and offered to help them record a proper album.

The album will be accompanied by a full US and European tour and – later this year – a graphic novel about the twins’ inspiring life, illustrated by Cynthia von Buhler and published by Dark Horse Press.

The stereotypes about disability here are pretty well-worn: according to this (fictional) backstory, the twins were “discovered by” and need “help” from two abled individuals, Palmer and Webley, to realize their musical potential. Add to this their “inspiring” origin story — which is fodder for a graphic novel tie-in — and you’ve got yourself one hell of a three-ring circus of disability stereotypes.

Thus far, it looks like Evelyn Evelyn’s primary aim is to be “inspiring” to abled folks (and to be a bit of creative fun for Palmer and Webley). The three songs currently available on MySpace only serve to continue this trope; “A Campaign of Shock and Awe,” in particular, casts the twins as “the 8th wonder of the natural world.” Good to know that even fictional people with disabilities are not exempt from being cast as “wonders” from which non-disabled people can draw inspiration and “marvel” at. Sound familiar? Add in a dash of hipster ableism and you’ve got something that looks positively transgressive, especially in comparison to the rest of the music industry.

Unfortunately, Evelyn Evelyn seems like a project that is far from actually being transgressive, even given the initial appearance of said transgression (because what’s more shocking and weird than conjoined twins, at least according to abled culture?). The project, as far as I can tell, makes no reference to the ways in which actual people with disabilities are treated in Western culture; this probably seems like a tall order for any musical project, but there is a chasm of difference between at least acknowledging that there are people like this (in this case, conjoined twins) who do exist and that they probably are affected by ableism, and outright appropriation of this uniqueness in the name of art. Certainly, Evelyn Evelyn is fictional, and while Palmer and Webley are not required to make any sort of political statement, the seeming lack of awareness that there are actual conjoined twins and that they do not only exist for abled artists’ dressing-up-and-performing purposes is rather troubling.

The larger cultural context of treatment of real people with disabilities, too, is conveniently forgotten (see the lyrics to “A Campaign of Shock and Awe”); the twins seem to exist in a world that is completely free of ableism (in forms subtle and not), harsh social treatment of PWDs by abled people, and pernicious, damaging stereotypes. This is particularly disappointing given that Palmer has written some great, quite un-stereotypical songs about PWDs and people with mental health conditions (one of which I wrote about in a blog post for Bitch Magazine).

I am a person with disabilities. I am a music fan. I am (sort of) an artist — one who mostly does graphic work about the disabilities of non-fictional people. However, Evelyn Evelyn, as a multimedia project, seems designed to keep people like me — real people with disabilities — out; this is not a new thing, considering the attitudes that folks in our culture hold about people with disabilities and their acceptable social roles. There are other, more creative ways to portray people with disabilities that don’t rely on facile stereotypes or on the ways that PWDs are already represented in popular culture. Representing Evelyn Evelyn as variously inspiring, freakish, weird and a “wonder” just reinforces existing stereotypes about PWDs, while ignoring the cultural context in which the project was conceived; while Evelyn Evelyn may be artistic and, at first glance, “different,” the attitudes beneath the project’s surface seem awfully mainstream.

Special commenting note: First-time commenters, please read and abide by our comments policy. Kindly refrain from commenting if your argument consists of any of the following: “You just don’t get it,” “You do not understand art,” “You are taking this too seriously,” “Evelyn Evelyn is not real, therefore the stereotypes about disability examined here do not matter,”  “Justify your experience and/or disability to me, NOW,” “Why are you criticizing Amanda Palmer? She is brilliant; how dare you!” I am familiar with all of these arguments — please be aware that they will probably not add anything to the discussion because they are classic derailing tactics, and I will most likely decline to publish comments that utilize the above arguments.

Similarly, this is not a thread in which to discuss how much you like or dislike Palmer or Webley’s music in general; comments to the effect of “Her/his music sucks and here’s why” will not be allowed, as they are also derailing.

About Annaham

Annaham (they/them) is a feminist with several disabilities who occasionally updates their personal blog. They currently live in the San Francisco Bay Area with their partner, and an extremely spoiled Yorkie/Pom mix named Sushi. You can reach them by emailing hamdotblog AT gmail dot com.

60 thoughts on “Evelyn Evelyn: Ableism Ableism?

  1. Well, this is most disappointing. Granted, I am an AFP fan, but I won’t be buying this. It seems a shame that an artist who has done so much transgressive stuff before decides to peddle the same old stereotypes of disability.

    What really bugs me is it’s not as if ableism and the normative body isn’t something that someone can write songs about.

  2. As a fan of AFP, I have been sort of following Evelyn, Evelyn, but something about the concept really bothered me and I couldn’t place exactly what it was. You’ve nailed it. Have you tweeted this at her?

  3. Wait, WHAT? Evelyn and Evelyn are fictional?? Not only fictional, but played in crip drag?! I… don’t know what to say. I only knew about E&E from Amanda’s tweets, in which she never gave any indication that they were anything but real people, and never mentioned the cheesy backstory you’ve retold here– it was just, “come see me at such-and-such a place, and see evelyn and evelyn, conjoined twins!”

    I thought it was brave of them to put themselves out there in a field in which the artists are so often judged so harshly on looks, and was heartbroken when I couldn’t make it to a concert in my area, because I figured their music had to be pretty decent if AFP liked it, and I wanted to support them. I was really excited, and started reading this post ready to defend them fiercely.

    But… it’s some kind of shtick?!

    I’m not sure I can see any way this is not problematic. I found Evelyn and Evelyn incredibly inspiring, not because they’d “overcome disability” but because it seemed they’d overcome ablism, by gathering so many twitter fans who seemed to find their disability so irrelevant to their music; I thought it marked a step in the right direction for artists with disabilities getting mainstream attention, and being treated as people first and foremost. But I guess I was wrong.

  4. eloriane, if you look on Youtube there are a couple of live videos of Amanda and Jason performing as the Evelyn sisters. It’s a very well-run campaign, I agree, but it’s all smoke and mirrors. So to speak.

    I like the songs that I’ve heard so far from the Evelyn Evelyn project and may have gone around singing “Elephant Elephant” for a week straight, but as lurrz says, you have nailed why the whole concept made me feel squeamish.

  5. Interesting post, and it would be great to read a response from the artists. I am looking forward to seeing the show here in Berlin, even though I do share a sense of unease about the whole premise. Given the fact that Palmer, especially, seems to be interested in maintaining some kind of unmediated contact with her fanbase, it seems worth trying to see if she & Webley would be up for engaging in some kind of dialogue about this, rather than just ignoring it. Sure, a commercial act (even a “hipster” one, heh heh) is generally going to be kept moving by incantations of “the show must go on” even when troubling aspects of its premise are brought to light — and of course all this really means is that investors want their return. But nonetheless maybe there’s some hope here that a discussion of this could inform the actual content of the shows, maybe even radically alter them.

    Also wanted to point out that you didn’t mention one of the most extreme ways in which conjoined twins are caricatured here — they both have exactly the same name. Of course there could be some “back story” here that their wicked parents just saw them as both the same and so named them thus, but still….

  6. the way AFP had been presenting them on twitter seemed exploitative, and as you say, freakshowish, so I was relieved she was not actually treating real live people like that, rather than imaginary characters. I hadn’t looked into it, past her tweets, and now that I did, It feels like horrifying cripdrag. Thee clip i found on you tube is like really, tee hee, pretending to be conjoined twins is so fucking edgy and cute? for real?
    ugh. she will do anything for that edgy and cute though, much as I like her music.

  7. I might make a longer post on my blog about whether it is ever okay for a person to create art that is in the “circus freak” genre or draws on those themes, if the person doesn’t have the “circus freak” disability themselves. I tend to think it’s sometimes okay–the TV show Carnivale is an example of doing it right, in my opinion, while the novel Geek Love is an example of doing it horribly, horribly wrong. It’s interesting that the creator of Carnivale had a father who was a wheelchair user, while as far as I know the author of Geek Love doesn’t have personal experience with disability. Maybe you have to understand that disability is real before you can do a good job in the “circus freak” genre.

    I mean, I think AFP probably just thinks of Evelyn Evelyn as drawing on the circus/carnival genre that she has frequently drawn on before. That doesn’t make this okay, but I don’t think she is consciously doing hipster ableism in the way that some people do. Given what I know of her, I really think it would be a good idea for someone to contact her about Evelyn Evelyn; I doubt that she’ll cancel her tour or anything but I think she would at least be open to considering the idea that it is fucked up, posting about it on her blog, etc.

  8. I believe right now she’s off somewhere and someone else was taking care of her online stuff for a bit, so maybe she didn’t cold delete the criticism off her facebook? although when I emailed her asking about something else I found problematic in her schtick, I didn’t exactly get a response.

    I’m a big fan of her music, so it disturbs me when she does something like this

  9. To me, the songs and descriptions seem sort of tongue-in-cheek, but that doesn’t negate your problems with this project at all. I feel disappointed that Amanda is using the conjoined twins schtick as a new direction in her career.

    I am fairly new to the politics and social issues regarding ableism, so forgive me if the answer to this question is dead obvious, but: would it be just as disrespectful and problematic if Amanda and Jason performed as EvelynEvelyn but without songs about being conjoined and without all the fanfare and fooferrah about their “bizarre” origins? If they simply performed as conjoined twins? Would that just be a different kettle of fish?

  10. While I think the author has an interesting point based somwhere in validity, It is interesting to note that Amanda and Jason are not dressing in cripdrag, walking up to a disabled person, and kicking them in the shins and calling them all sorts of awful names any more than two persons with this condition are dressing up in one-person drag and kicking Amanda and Jason in the shins and calling them all sorts of awful names. My point is that political correctness can sometimes be offensive and stiffling when employed to a fault and while I give full props to the author for exploring the issue, I would ask that they remember how Mr. Bungle was completely unpopular untill Tipper Gore complained about how violent and unorthodox the band’s content was and how in the end, not a single teenager committed an act of violence under the influence of the loveable Mr. Bungle. Whether Amanda and Jason are perpetuating a stereotype, however, cannot really be decided untill this tour of theirs has run it’s course.

  11. I think what some people don’t understand is WHY Evelyn and Evelyn exsist… If AfP wanted to release new material, it would have to be released with Roadrunner as she still is contractually obligated to give them another album. The Evelyn sisters is a way for her to release a new album without having to deal with the shite her label has been putting her through.

  12. I’m not going to comment on what you said, but I AM going to comment on your contradiction. “Special Commenting Note…” – ARE YOU SERIOUS?! So, you get to speak your mind, yet anybody who has a different view can’t speak? It’s not fair to people who have taken the time to read your words and end up not being able to say what they think. This is a public website, nobody should be left out.

  13. Do you feel the same way about Shelley Jackson who wrote the novel Half Life? Or Lori Lansens who wrote The Girls? How about the makers of Carnivale or Katherine Dunn who wrote Geek Love. Last time I checked none of them were disabled.

    How does this project affect your quality of life as a disabled person? How does it actually affect any disabled person’s quality of life?

    Maybe you should focus on things that are actually important.

  14. Neil Gaiman, who is also involved in the project, is now discussing it at his facebook page. Excerpts from his comments:

    Details and an explanation, and some true things and some, um, interesting things, at Amanda Palmer’s blog…

    Some of my favourite musicians are fictional. The Archies for one. Gorillaz. I’m happy to say that I’m not prejudiced against fictional characters.

    I was originally replying to the question before yours, from someone who *had* noticed that the twins were fictional.

    Jacob, interesting link. I think they have some valid concerns, although I think that Evelyn Evelyn, as a piece of performance art and a story, is about conquering obstacles and survivng and making art against all odds.

  15. Erin: You might want to read between the lines of that post before you tell others off for not knowing what they speak…

    It might be interesting if the proceeds of the project (financially or otherwise) went towards a social circus project (using circus as a means of social justice or community development). If I heard about some circus people that were being exploited and used (esp for child porn) my first instinct would probably be to get legal action against the circus… o_O

    *is more confused than anything*

  16. I mean, I think AFP probably just thinks of Evelyn Evelyn as drawing on the circus/carnival genre that she has frequently drawn on before. That doesn’t make this okay, but I don’t think she is consciously doing hipster ableism in the way that some people do.

    I agree with you AWV. I think AFP drew from the circus genre without thinking about how certain elements of that genre were problematic, especially this one. I’m not entirely sure how I feel about this yet, but I’m glad there’s a thread discussing it here.

  17. I’m not disabled, though I like to think I’m sympathetic to those who are, given that my mother uses a wheelchair and has since I was a kid. I don’t “get it” from getting it, but I’ve seen the prejudice in action and up close (physically and emotionally close), may’ve even started a fist fight over it at some point or another (hey, in my culture, you don’t mess with a man’s momma…).
    That said – I’m in love with the idea of Evelyn-Evelyn. As a piece of performance art, and what so far appears to be really good, entertaining and thoughtful music.

    Everything gets bought and sold. I’m a rock climber, a “sport” I find to be a very pure, real, natural and healthy whole-body/whole-mind way of life, and see the image of those like me used to sell allergy medication and insurance policies. I’m a cowboy, and see the image of those like me and our history used to sell awful beer, nasty chili and as a label for war-mongers. I’m a firefighter, and what *aren’t* we used to sell; We’re used as figureheads for all sorts of things we may not actually believe in, our image graces every genre of advertising imaginable. And I could go on, almost everything I choose to let define my life is used to sell, to whore for, some despicable or at the best, useless, product or company. I find these things offensive, to the true nature of who I am, and what those things are.
    I would be gol’danged thrilled to see a schtick of rock-climbing cowboy firefighters used to make beautiful music, or some other form of art. To be used to bring creativity, light, and meaning into a world that is often devoid of them.
    Even in what is commonly accepted as music, as art – Those things are often soulless, entirely bereft of beauty and value. We need more beauty and art and light in the world. And if it takes a schtick to sell that beauty and art? So be it. At least that schtick is going to a better purpose than selling the soulless products of morally bankrupt corporations.

  18. Just read this comment by “Boristhespider” on Palmer’s blog:

    The idea of Evelyn Evelyn is a wonderful story. Obviously they’re Amanda and Jason. That’s obvious from the photos, the YouTube videos and the songs. You would have to be blind, deaf and very very stupid not to notice.


    And adding child sexual abuse to the disability “performance art” “joke”? Really not funny.

  19. I think this is being blown out of proprtion a little bit. Yes, Evelyn Evelyn are “conjoined”. But in what way is AFP/JW being offensive towards disabled people, or conjoined twins? It’s not like “look at us, we’re conjoined twins, come marvel at our freakishness”. Yes, the lyrics to “A Campaignof Shock and Awe” could be considered offensive. But if you listen to the whole song, the parts about being a freak of nature etc., are being sung by )what I presume is) the circus master or whatever he’s called. The whole song, for me at least, fits into AFP’s blog about the twins being exploited by the circus.

    I don’t know what it’s like to be conjoined, or disabled. Maybe you are offended by it. But the way I see it, it’s just a way for AFP to make new music, presenting it in a unique way other than just “here’s me sat at a piano”. But are they saying “look at us, we’re conjoined, we’re freaks!”? No they’re not.

    But I do agree with some other people, I’d be interested to see how AFP were to respond to this if she saw it.

  20. That’s the part that really made the difference for me. You could make a case (although one difficult to believe) for her not realising the disability-angle, but the child sexual abuse is just too much

  21. Erin, consider some things:

    1. Do you know anyone who gave their kids the same name?
    2. It is really rare for conjoined twins to live past babyhood. Therefore, it’s hard for them not to be famous. Abigail and Brittany Hensel don’t even want to be famous, but they sort of are anyway. If a pair of conjoined twins wanted to produce music without having anyone pay attention to them, then they wouldn’t play shows, and they wouldn’t have their band artwork be pictures of conjoined people and animals.
    3. Don’t Evelyn Evelyn songs sound like Amanda Palmer and a guy?

  22. Yes, Alexandra, I am serious. I mentioned in the commenting note that those tactics are derailing, and therefore not relevant to the actual conversation. If you want to contribute to the conversation, please make an effort to stay on-topic instead of nitpicking.

    Morgan, from what I can tell, you are able-bodied, so I don’t see how your rock-climbing analogy is relevant to my points here, particularly when disability — something that most people whose lives it affects do not choose (unlike, say, rock climbing or being a cowboy) — is being appropriated. Disability is not a hobby. It is not an occupation. So when it is appropriated in the name of “art,” I tend to get a little anxious.

    el frog, maybe you should focus on not leaving drive-by comments that are straight from the derailing playbook. This is important, and I’m sorry that you can’t seem to grasp that.

    And the “I’m not disabled but I don’t find this problematic…”/”You’re blowing this out of proportion”/”Chill out” comments are REALLY disheartening. I probably should have mentioned in my OP that this is a site run by feminists with disabilities, and as such our perspectives are probably not those you would find in the mainstream. Please, step back for a bit. Try to think about these issues from another perspective instead of rushing in to tell me how wrong I am, or how the fact that it’s art makes it all okay and not at all offensive to actual people with disabilities (I am a PWD, by the way).

  23. It’s our blog. We’ll focus on what we consider important. And yes, criticism of pop culture is important. It informs and is informed by social structures that tend to work to the disadvantage of marginalized persons (which is why we’re not privileged on certain axes). So what if there are reasons Ms. Palmer and Mr. Wembley created Evelyn Evelyn — say, finding a way around unpleasant contractual obligations?* The privileged always have reasons and it usually boils down to either they benefited directly from their actions that were harmful to marginalized persons, they didn’t consider that what they were doing might be harmful to marginalized persons, or some combination of both.

    And we aren’t saying you can’t be Amanda Palmer fans. We aren’t even saying you can’t like the Evelyn Evelyn stuff. That isn’t it at all. What we’re doing is pointing out the structural issues that affect all of us and noting how this here specific thing fits into that structure. We aren’t taking anything away from anyone.

    * This was, in fact, the exact reason Prince changed his name to a glyph for a while back when. He caught a whole lot of flack for being a weirdo pretentious artist (which wasn’t exactly new for the man) but he managed to accomplish that feat without involving anyone else. Amazing!

  24. Have all the “Oh it’s not that bad” apologists for Palmer and Webley not seen the Spin magazine feature in which they impersonate Evelyn and Evelyn?

    Or do they not get that people dressing up in conjoined-twin costumes and pretending to be people who are conjoined twins is offensive to people who are actually living as conjoined twins?

  25. Nah, JMS, it’s fine, just like black-face is fine and it would be totally okay for AFP to do it too.

    Crip drag is a serious issue although it isn’t exactly like black-face, as a POC I feel okay making that comparison. Just like being black isn’t something you can just “put on” without it being problematic, you also can’t “put on” disability without similar issues.

  26. My point wasn’t that my experience equated that of someone dealing with something they couldn’t choose, but were forced to overcome – It was simply that, no matter who you are (I identify as the things I mentioned, in a deeper way than a hobby, and didn’t intend them to make issue of being able bodied or not) it gets used in some fashion. No element of the human experience is not bought/sold/marketed. My thought is that I’d rather see it used in fairly honest, independent, art/creativity than for, say, Monsanto or Burger King or Wal-Mart advertising.

    Beyond that, I’m curious about a couple things-
    Above, Palmer and Webley are referenced as being privileged – Successful artists aren’t people of privilege, they fight for everything they get and have, and do so on often meager means. Try doing it sometime. Privilege is being born into the Trump or Kennedy family, not being (even a wildly successful) independent artist.
    I don’t see Evelyn Evelyn as marginalizing to conjoined persons at all, much less taking advantage of marginalized people. It’s just an image. Did the actors on Glee marginalize or take advantage of marginalized people by doing a routine in wheelchairs? I don’t think so. I could be wrong – Being able bodied, I may lack the appropriate perspective to fuel my indignation.
    Also – Is anyone in this comments thread actually conjoined? Friends with, related to, a doctor or advocate for, someone who is conjoined? Has anyone asked the Hensel twins for comment? I’m guessing no, no and no. If that’s not true, then I think that should be broadly advertised (I’d certainly eat some crow in that case). If no is the answer across the board, then a lot of this seems to lack sincerity to me. Particularly the comments saying Evelyn Evelyn is offensive to conjoined individuals. It unfortunately smacks of feigned indignation, which does nothing to actually further the cause and the needs of disabled persons, and can actually serve to further marginalize them in the eyes of the able.

  27. Morgan:

    You might want to take a look at concepts like white privilege and abled privilege; artists absolutely fight for what they have, financially, but that is not what I am talking about when I say “privilege.”

    Other authors on this site have covered Glee in great detail. I suggest that you click on the “media and pop culture” tag to find the posts.

    And your “is anyone here actually conjoined” question smacks of “Justify your disability to me, NOW,” which I specifically requested that people NOT do in the comments here. You may think my critique is “false indignation,” but as I said before, I am a PWD, as are all of my fellow contributors, and so are many of the commenters here. People with disabilities can indeed critique representations of those with disabilities other than their own. Please do not tell me how I “should” argue or that we PWDs are somehow further marginalizing ourselves in the “eyes of the abled” by not conforming to your specifications; I do not look particularly kindly on abled people telling me how I could make my message more palatable, or that I am being “insincere.” People who are not marginalized do not have the right to tell marginalized people what to do — this is a very basic principle of social justice. If you don’t understand that, I’m not sure what else I can do to help you.

  28. I was not derailing. I am genuinely interested in your feelings about other authors/artists who have done the exact same thing.

  29. Morgan said:

    No element of the human experience is not bought/sold/marketed. My thought is that I’d rather see it used in fairly honest, independent, art/creativity than for, say, Monsanto or Burger King or Wal-Mart advertising.

    I think this is a problem in itself: the idea that we should just settle for the fact that every facet of the human condition is, or will be, marketed/a commodity. That we should treat that, in our interaction with issues like the one under discussion, as an absolute and immutable fact of life, of society. That we needn’t step back and say, ‘Wait a minute, *should* it be like this? Can we change it?’

    I don’t like arguments that rely on sorrowful head-shaking about supposedly unchangeable states of affairs, or the idea that we should just be relieved when such commodification takes (what Morgan considers) the least harmful of a range of possible forms. It’s a type of argument that often comes up in relation to challenging things like appropriation, privilege and prejudice and boils down to ‘be glad it’s not worse’. Something I think we, PWDs, hear a lot.

  30. @Morgan Atwood: Your conception of privilege is wrong in self-serving ways; with the bar set so high you are equally as oppressed as we are and therefore get to say all kinds of stuff without being the privileged person who is saying outlandish stuff. Thought that is exactly what you are doing. Privilege and oppression are multidimensional; a person who is privileged in some aspects may be disadvantaged in others. This more nuanced definition of provileged is fundamental to all social justice work. Your assertion that only the most privileged people have privilege is derailing of the first water.

    As currently non-disabled people who live in a world where disabled people are denied access to much of it, Ms. Palmer and Mr. Wembley have considerable privilege on the disability axis. Even though they may be disadvantaged in other ways and compared with other persons.

    You, as a person privileged on this axis, do not get to assert what is harmful to us and what is not. By doing so you insist that your privilege is more valid than our lives and our experiences. Asserting that your climbing avocation, devoted to it as you may be, to our living in a world that is in many ways opposed to our existences is derailing and insulting and since you have been told this and you repeat your assertion I can only assume that it is your intent to be offensive. Images of climbers are used in advertisements and by ways climbers would not support but the parallels end there I assure you. Have you often been told that you should be dead because your appearance in public is upsetting? Do businesses open to the public often make it impossible for you to enter them? Are you told that your climbing does not in fact exist and that you are just making shit up for the attention it gets you?

    These are also fundamental concepts in social justice.

    Your perspective on disability is not relevant to this discussion. This is difficult to hear. As a white person my perspective on racial discrimination is not relevant. I spent a long time getting over “But I have something to say too!” I actually don’t. I like it better when I listen; I learn much more and cause less harm.

    We are not silencing you. We cannot silence you. The rest of the world is yours; this tiny piece of the internet is ours. We don’t have to give you a platform in our space.

    It unfortunately smacks of feigned indignation, which does nothing to actually further the cause and the needs of disabled persons, and can actually serve to further marginalize them in the eyes of the able.

    We are entirely capable of defining our own cause and knowing our own needs. We do not want your concern.

    @el frog: No. You told us to focus on what was really important. That would be derailing. I’m not interested in doing anything else you tell me either.

  31. hi el frog, I’ll just talk about Carnivale and Geek Love since those are things I mentioned in my first comment on this thread, and I’ve written about them before, so they’re easy for me to talk about. I don’t think that either of those are “the exact same thing” as Evelyn Evelyn.

    I think that Geek Love is fucked up and ableist because I think that Dunn uses people with disabilities as part of a general style experiment where she tries to write a book where everything is disgusting and horrible. I’m oversimplifying the book by saying this, but I think that is a big aspect of the book: Dunn describes things in a disgusting way (breasts are constantly being described in the most intentionally gross way possible, for some reason; trying to clean the mildew out of Arty’s balls; etc.) and portrays the main characters–the heroes, to the extent that anyone can be described as a hero in this book–doing things that are pretty awful (murder; trying to genetically engineer their kids to be severely disabled; supporting your evil brother just because you are in love with him). I think that the disabilities of the main characters are part of an overall attempt by Dunn to disgust the reader. I’m NOT saying that their disabilities are actually disgusting, or should be thought of as disgusting, obviously. However that is what Dunn communicates when she tries to use their disabilities to push the reader’s limits. I think Geek Love is inarguably really offensive, and much, much worse than Evelyn Evelyn, or probably anything Amanda Palmer could do or has ever done.

    On the other hand, I think Carnivale is really good. Dan Knauf’s father was disabled and he took his father’s life experience into account when creating the show. He also cast actors with disabilities, and listened to the opinions of people with disabilities (like the actress who played Sabina). I feel that while Knauf is into the circus/carnival genre, just like Dunn and AFP, he also understands that pwds are real people, and cares about respecting us and portraying us well.

    so, that is the difference, I feel very different about all three things, and I think that if you think they (and the other things you mentioned) are examples of artists doing “the exact same thing,” then you’re not thinking about it enough.

  32. I agree with Morgan on the point about actual conjoined twins… You say that PWD are allowed to judge whether other disabilities will be offended… does that work the same for me? I’m I allowed to decide whether a non-disabled person is going to be offended by something? Could I watch a film, then decide that a black person will be offended by it?

  33. @Alex – let’s take this to the logical end. you seem to be arguing that only conjoined twins can speak to potential offense, because it’s conjoined twins being exploited in this particular piece of performance art. but then, this is about female conjoined twins, so male conjoined twins probably couldn’t speak to it either, so we should really hear from female conjoined twins. and i bet the location where they’re joined makes a difference, so only female conjoined twins joined in the same place could really speak to it. this same reasoning can be applied to other kinds of disabilities – why let someone who uses a wheelchair talk about discrimination on the basis of a mental disability? or people with schizophrenia talk about discrimination against someone with depression? or someone with depression who responds to prozac talk about the issues of someone with depression who responds to lexapro? i mean, we’re all just special snowflakes, right?

    except the world does treat people based on classifications. and people often make judgments and assumptions based on those classifications. so someone with a disability has a pretty good idea how the world treats someone with a disability. is it exact? no. will all PWDs think exactly the same thing about every issue? of course not. but we, as PWDs, are generally more qualified to speak to discrimination on the basis of disability than a TAB.

    i would also note that the point of this post and this discussion has never been that the project is offensive only to people who are conjoined twins. i am not a conjoined twin, and i am offended by it. people are talking about real, actual offense that they are experiencing, not abstract and hypothetical offense taken by conjoined twins. PWD are definitely “allowed to judge” when they themselves are offended, which is what is happening here.

  34. Thank you very much for this illuminating post. As an able-bodied individual I’ll confess that don’t know enough about the issues that PWD face; I had felt uncomfortable about the project before, but this really opened my eyes up to the problems it’s raising. I’m sorry that you’re dealing with such bs in other comments.

  35. I am one of the people who did not know Evelyn Evelyn was a sham until today. I followed the Evelyn Evelyn twitter and whatnot, but I never really dug deeper, until Amanda posted that blog. My first reaction was just sympathy towards the “twins'” story, because I honestly didn’t realize it was made up until I saw some of the stuff going down on twitter. I was really touched by their story, and I’m guessing a lot of other people read it and were touched as well. And then I found out it was fake. And then I got fucking pissed.
    I am still livid as I type this. I’m not disabled, but many people in my family are, and I do not find it artsy or funny or cute that two able bodied people would dress up and pretend to be disabled just to get press or avoid label conflict or whatever the fuck they are aiming for. I was a fan of Amanda Palmer’s, but upon discovering this, I doubt I will remain one in the future.
    There is just so much wrong with this that it amazes me that anybody could laugh it off or defend it because it’s “just art.” This isn’t art, this is ableism, plain and simple. I’m too angry right now to properly convey everything that upsets me about this, but yeah, I agree with the OP.

  36. And I think this will all end with Evelyn and Evelyn flying away in a weather balloon.

    I believe the initial reactions were “we know this is a stunt, why then continue the charade?”

    Beyond that, it’s pretty much using pain that other people actually experience to make a quick buck. Well, she got the attention she wanted, again.

    I don’t like or dislike Amanda Palmer. I don’t like people who lie to people, who use emotional manipulation to get attention, to make money. At least Orson Wells and the guys that did the Blair Witch project came out right away and said it’s fiction folks. Wells may not have done it at the beginning of the “War of the Worlds” broadcast, but when they realized what they were doing was upsetting people, they didn’t wait.

    As Ryan said, she played on his emotions. Using disabled abused characters to gain his sympathy. It’s bad enough when we already know it’s fiction, but to purposely continue this charade as real…and use “make Art” as her excuse not to face up to any of this? I guess her short term gain means more to her than ever reaching out to a bigger market.

    Appreciate the post and the chance to comment finally.

  37. About Wells and War of the Worlds – I read that he did say it at the beginning, but because of scheduling, most people tuned in a few minutes after his disclaimer, and thought it was a straight-up newscast. (Though I doubt anyone took it as far as Springfield did.) And by the time he said, dudes, it’s from a book, people were busy freaking out because Alien Nazis were invading. You can tell the book’s not with me, can’t you?

    As for this, I’d never heard of anyone involved until I read the post. (I just downloaded Lady Gaga’s “Bad Romance” – I’m on top of the popular culture.)

    I don’t get it. I do think it’s a creative way to get around contracts, like Prince, if that’s the case. It would be great if they were working with a disability group, fundraising something like that.

    But it’s just puzzling – conjoined twins are always identical, and thus the same gender. She couldn’t find another woman to do this with her?

    And I just saw that “there are more important things” in a discussion about super bowl ads. It’s all related, and maybe some of us are more comfortable talking about ads right now. But the troll/derailer just sees this one thread and assumes that’s all that happens.

  38. I do think it’s a creative way to get around contracts, like Prince, if that’s the case.


    Would performing in blackface be a “creative way to get around contracts” or just plain offensive? Why does performing in cripface seem less offensive to you?

    This isn’t like Garth Brooks performing as Chris Gaines. Amanda Palmer could have performed as Suzy O’Neill or some other currently able-bodied person, not as a person living with the challenges of being a conjoined twin.

  39. JMS – I think it’s creative, but not good.

    Actually, it’s not that creative, it’s as lazy and offensive as blackface. I did thing of Chris Gaines, maybe “creative” came to mind because they made up a backstory and people believed it?

    I do think it’s offensive and just… pointless. Why?

    It doesn’t look like the world will get an answer, since she deleted all the e-mails asking her WTF.

    I’m sorry, I wasn’t thinking, and I was trying pad out my response like I’m doing now. (I only started because I wanted to talk about War of the Worlds, but that is hella derailing.)

  40. abby jean: but we, as PWDs, are generally more qualified to speak to discrimination on the basis of disability than a TAB.

    Quoted for emphasis. I would very much appreciate it if the non-disabled people coming into this thread to tell us all how wrong we are would make a concerted effort to check their privilege and not immediately revert to defensiveness, and understand WHY we are making these critiques instead of demanding to have it *politely* explained to them right now. We’ve got an entire site full of material written on related topics, including a lot of stuff on stereotypes, social attitudes, and media representation.

    Please, look around. Read. Think about how your unexamined privilege might be reinforcing attitudes that are already there. Remember that there is an entire world out there where persons with disabilities are devalued and silenced; this is not the place to continue that pattern. Unfortunately, from some of the comments I’ve seen so far, some people do not seem to understand this.

  41. I think disabled people have real fights to fight. This is not one of them, let it go. But I know you don’t want comments that don’t agree with you, right?

  42. Hey Clarissa! You’re totally right! How silly of us! We never write about the way people with disabilities are murdered! We never write about treatment in hospitals or long-term care centers! We never ever talk about things like financial planning for people with disabilities, or poverty and how it affects people wit disabilities, or the incredibly high amounts of abuse and neglect that people with disabilities report! No! Never ever ever!

    In fact, I can’t see anything else on this blog today except stuff about Amanda Palmer! All those other posts up there are also about Amanda Palmer! You just need to read between the lines to see them!

    Or, maybe, since there are obviously other things that you think people with disabilities should be doing with their time, other than writing their opinions on things, perhaps you could suggest some? Or is leaving passive aggressive demonstrably false comments the thing you do with your spare time?

  43. Clarissa, have you taken the time to read the post, the comments, or look around this site? Have you stopped to consider WHY I told people to not leave derailing comments (and yet they did anyway)?

    Yeah, didn’t think so. How hard is ANY of that to understand?

    As anyone who’s taken the time to read the post and comment thread can see, I and some of the other contributors here have let through and responded to some very questionable comments despite an initial desire to keep the thread free of derails; some of these comments are variously derailing, scolding, and make use of certain arguments that are really not appropriate.

    I have done this primarily for two reasons: a.) I, and other contributors, have made an effort to explain exactly why we think this project is so problematic to people who might not otherwise come into contact with the ideas presented here; b.) some of the comments here serve as excellent and troubling examples of what happens to many marginalized people every single day: we are shouted down; told that we are promoting a double-standard; told that our experiences, thoughts, and feelings do not matter compared to those of less-marginalized people and/or their creativity; are accused of being too sensitive, et cetera, et cetera. I now realize that it was probably too much of me to expect that people would read the post and thoughtfully consider and discuss some of these issues instead of going into knee-jerk defensiveness in the name of protecting “art.”

    Art can handle critique. This is not a new idea.

    Seriously, folks, I am losing my patience.
    .-= Annaham´s last blog ..Imbroglio a Go-Go =-.

  44. I think disabled people have real fights to fight. This is not one of them, let it go.

    So you mean the idea that disabled people are a hilarious freak show to be stared shouldn’t be fought? The idea that disabled people are pitiful and childlike? The idea that it’s okay for abled people to put their dehumanizing narratives ahead of our voices?

    Because it’s not like this has serious consequence like, I dunno, disabled people getting harassed in the street, being patronized and having their agency taken away.

    Thanks for the useful information!

  45. Hello everyone.
    I am a little wary about sharing my thoughts because I’m not even sure what they are yet, but I feel the need to and this seems like a good place to do so.

    I am non-disabled and I wouldn’t call myself a fan of Amanda Palmer. I have a few of her songs on my ipod, but I have never really gone out of my way to follow her work. I only found out about this about an hour ago.

    I am currently witting a story about female conjoined twins, and I came upon this project in my research. I know quite a bit about conjoined twins, so I knew this was fake pretty much right away. I found it an interesting idea, maybe even one that could work. I went on the Evelyn Evelyn myspace and I like the songs, I think they are good, I may buy the album, I don’t know. I think its fine that some of the songs are about conjoined twins, but pretending to be conjoined is just a whole different can of worms

    The way everything is being handled makes me feel a bit uncomfortable. The back story blog post just made me feel a little sick inside. As a writer I know that sometimes that is the purpose of fiction and art, to make you feel an emotion you don’t really want. I don’t really have any issue with the backstory itself. Bad stuff happens to people in real life. Bad stuff happens to people in fiction. But Amanda and Jason do not seem to take this seriously. I mean, I’m sure they do, its their project but…. Damn it, this made since in my head. From what I’ve seen it seems like they are playing this for comedy almost. I may be wrong, I have not looked very far into this project yet. It just seems like they are using this sob back story to get attention, and then hiding behind the ‘it just art’ thing when people get pissed about. ‘Art’ should not be used as a shield.

    Daisy and Violet Hilton were real conjoined twins born in 1908 or 7, one of the two. They were sold by their own mother. They had no acces to the money they made until they were 21 and were released from their guardians after a court case. They had a bad and fucked up childhood.

    Is it wroung to write something fictional like that? No, I do not think so. But I think it is wroung to use it for the lols or take it lightly.

    I hope some of that made sense. 🙂

    Also you guys have been giving me stuff to think about how I write about my conjoined twin characters, so thank you

  46. I guess it goes without saying that Amanda Palmer and Jason Webley do not know anyone with this condition and therefore it did not occur that it might be hurtful to some, but I think that it would a mistake to completely disregard the intention of this project. Not to excuse any damage that this may or may have not caused but despite this, I think malice plays an important part in this situation. Seeing as it was clearly not the intent of the concept, I think it would be a grave mistake to completely disregard it as a peice of artistic thought (albeit poorly thought out) k I’m done…

  47. It is often asserted by the privileged that intent matters. Of course they want intent to be considered–it has even been written into USian civil rights law that the action must have been undertaken with the intent to discriminate. This makes it possible to do things that have the effect of harming people–this is called disparate impact–while claiming that the intent was pure.

    For example: Until it was determined that police and fire departments were unlawfully discriminating by not hiring women, height and weight requirements did not exist. When they were required to hire women, height and weight requirements were enacted. It just happened that these height and weight requirements excluded a good many women, but the men in charge of those departments could claim all day that their intent was just to make sure that any applicant was capable of doing the job, that’s all. They weren’t intending to keep women out. Of course the men who’d been hired before those requirements were enacted, well. It wouldn’t be fair to them to have to meet standards that weren’t in place when they’d applied for the job, now would it? So they got grandfathered (ahem) in and got to keep their jobs.

    It’s all just peachy ’cause nobody intended to discriminate. Except they did; they just found a way to do it that didn’t officially hang a Women Need Not Apply sign on the wall.

    I used to care some about intent. If they didn’t intend to be harmful then you know maybe cut them some slack let them explain themselves whatev. I don’t care at all about intent any more. I don’t care about anyone’s intent including mine. It does not matter. What matters is harm. Was harm done? Then there’s a process: Apology, amends, doing better in the future.

    At no point does the process include “Fuck off peasants; my mind is far too fine a place to be sullied with your words” or even “We were just having a bit of fun.”

    Of course it didn’t occur to Ms. Palmer and Mr. Webley that what they were doing might be harmful. That’s what privilege is for.

  48. I was unaware that being conjoined was considered a disability. Perhaps someone can explain this to me?

  49. re intent: I don’t think it matters in terms of how much damage the action causes … where I think it matters (to some) is in deciding how to respond. For some people, however, they will respond the same to an offense no matter what the intent – whether it was thoughtlessness or carelessness or malice. I feel like that’s each person’s prerogative.

  50. I’ve lived in Walla Walla for half of my life, and never have I heard of conjoined sisters here. My opinion on the issue is not the same as Annaham’s, but I feel I should close the coffin on the reality of the sisters themselves. They do not exist in the real world, though most certainly they are real as characters in the imaginations of millions.

  51. Add me to the list of people who didn’t know Evelyn Evelyn weren’t real people. I was really shocked to learn the truth. And I think my entire problem with the whole situation is the lying and the air of it all being a big joke. I don’t think it’s funny to joke about conjoined twins being sexually molested (and really I think people who do think that is funny are pretty sick.) And it’s just that there’s no hint whatsoever that it’s being made-up. Amanda Palmer always talks about them like they’re very real. That bothers me.

    But, I don’t know, I like reading both POV on this issue. I can see where people are coming from, saying she’s drawing attention to disability, animal cruelty, human trafficking, etc. I like that. I think it’s a good thing to do. But I think she’s doing it the wrong way.

    So, sorry, but I think this is a publicity stunt. I think her stripping on the red carpet was too. I think she has a history of publicity stunts, so it’s hard to take this latest incident as anything but that, considering how over-the-top it is. It’s too bad, too. I think she’s an interesting person and has interesting things to say. I wish she would find a better way of saying them.

    (Also, I think some of the comments on this blog are a little too defensive and are derailing to the overall conversation. Just wanted to throw that out there, because I think this is an otherwise really nice blog and it has sparked some really fascinating view points.)

  52. I’ll start by saying that I’m not disabled, but in the interests of free speech, I don’t think this deprives me of a right to comment, or means that my views are irrelevant. I’ll admit that I’m a big fan of both Jason and Amanda, and that the idea that Evelyn Evelyn might be offensive to disabled people did not occur to me until reading this blog.

    I think you make a really good argument and I think the debate it has generated is great and very useful. I’m not going to argue on the ‘publicity’ (for lack of a better word) of the project. Although I realised that the twins weren’t real quite a long time ago, I can see that people who are maybe more casual fans didn’t. I can see how the way its been promoted, and the way the interviews were conducted and the presentation of the ‘back story’ might be offensive and give the impression that Amanda and Jason were treating the project as a joke or making fun of conjoined twins. Perhaps this was an error in judgment, but it was certainly not intentional or even careless, and, judging from Jason’s blog post, this debate has certainly brought this home and given them some food for thought.

    Although I haven’t seen the show, from what I’ve read about it, it seems that it is intended to be more of a musical theatre-type show, an accompaniment to the concept album. While I stand corrected if this isn’t the case, I see Evelyn Evelyn as being fictional characters, and in that way no different to any other disabled characters in films, novels and theatre, of which there are plenty. They’re there to tell a story, and yes, the story is about them being exploited and abused, but how is that different to the multitudes of other fictional works about people, disabled and otherwise, facing and overcoming hardship?

    I see the Evelyn Evelyn story as a very positive one, an outlet for Amanda and Jason to collaborate on some great music, and draw attention to some important issues as well. If nothing else, at least it’s got people talking about something important 🙂

  53. Alright, folks, I think this thread is ceasing to be productive and/or make anyone think about these issues in ways other than they have already decided to think about them. It is really, intensely obvious to me that a lot of people aren’t listening and are definitely not getting the whole “letting people who actually have firsthand experience with things like ableism and disability raise these questions” thing because it is too important for them to, for example, analogize peoples’ lived experiences to hobbies, or excuse things away under the guise of “art.”

    Social justice 101: When you have more privilege (look it up) than members of a marginalized group — some of whose members are talking about something problematic or offensive — you do not get to decide what is offensive or not to some members of a marginalized group when you are not a member of that group yourself (ie: non-disabled people do not get to decide what is offensive and not to people with disabilities). Asking me “what’s wrong with you” (as one unpublished comment did), telling me that I need to chill, that this is not important, that you’re able bodied and don’t find this offensive, that I am somehow disrespectful of your rights by wanting the conversation to stay on topic, that it’s just “art,” that I am ruining peoples’ fun by getting upset — all are classic derailing or silencing tactics. We PWDs can speak for ourselves now and express our own opinions, amazing as that may sound.

    I and other contributors have repeatedly asked people in this thread to examine their privilege and prejudices, and to listen to what we have to say. By and large, this has not happened. I, for one, am sick of having played nice with people who are ultimately not interested in what I have to say (or in examining these issues from the perspective that disability is an actual human experience and not just something to draw upon for art’s sake), and having my willingness to explain very basic concepts spit right back into my face.

    I understand. It doesn’t matter to you. I totally get it now. I’m sorry that we mean, humorless disabled folks ever invaded the internet with our feminist-y media criticism and all. Of course, now that I’ve made this decision, I’ll probably get slammed for “censorship.” I have no responsibility to let people say whatever kind of bigoted stuff they want here and get away with it. You have the entire internet for that.

    I’m done. Further comments will not be published.
    .-= Annaham´s last blog ..Imbroglio a Go-Go =-.

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