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“Saying conjoined twins are disabled is insulting!”: Evelyn Evelyn, redux

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46 responses to ““Saying conjoined twins are disabled is insulting!”: Evelyn Evelyn, redux”

  1. Annaham

    Thanks for analyzing some of the underlying issues so clearly and concisely, Lauredhel. If people start asking “But what does this have to do with ACTUAL people with disabilities?” again, I will link them to this post, because you do a fine job of laying it out.

  2. hsofia

    How disappointing on the part of Amanda Palmer and her music partner. Not that I was a fan of her music to begin with (I only know of her because I follow her fiance, Neil Gaiman, on Twitter), but I am appalled at the “removing the disabled feminists” statement. Wow. How disrespectful.

  3. Mary

    I’m the sharpest_rose blogger linked above — Amanda has now blocked me from reading her twitter. How classy.

  4. Norah

    “You can tell they’re not real disabled people anyway because real disabled people refer to themselves as ‘differently abled’? ”

    Wow.

    That’s all I’m going to say because anything else would break your comment policy.

  5. Stylishb

    I’m curious about what the response will be. For my part, I feel pleased that so many people have eloquently and clearly stated why so much of the EE thing is, to put it kindly, problematic.

    That said it does make me sad that it had to be someone whose music I generally like a lot. Why not Nickelback? Sigh..

  6. AWV

    oh that fucking sucks, I can’t believe she said that in her twitter. This really makes me depressed and makes me lose a lot of respect for her. I’ve always been really into her and I’m very disappointed that she hasn’t had a friendly response to this.

  7. Anna

    Putting Amanda Palmer out of her mind, Anna reminds herself that the world is full of awesome and amazing people with disabilities who create music, art, and poetry, who put themselves out there despite the opening to ridicule, who talk about having been abused, sexually or physically, by their caregivers, and do it all because they are actually strong.

  8. Donna

    I don’t know if there is a way to do this project in a manner that respects PWD, but I’m shocked she didn’t even try. She had over 800 people with concerns about this and couldn’t reach out to any of them? You would think that an artist would want to make this as “real” as possible and not just a big inside joke that offends hundreds of her fans. For example, getting on a conference call with FWD members and tossing around ideas would also be making music and help in planning her project without hurting and ignoring people. In other words, it isn’t necessary to “remove disabled feminists” in order to make music, she could have listened and still made music.

    Mary, this is soofriends. Just wanted to tell you again how much I appreciated everything you were saying last night.

  9. codeman38

    Wow. Between the one commenter on Palmer’s forum who claims that PWD use the term ‘differently abled’ (WHAT) and then her tweet about ignoring the hundreds of e-mails rather than, say, trying to do damage control by writing a blog post addressing those hundreds of emails…

    GAHH.

  10. Nomie

    Something I find… interesting, I guess, is how few people have been mentioning Jason Webley. He has a much less prominent online presence and is much less famous, and he doesn’t have the superstar writer fiance, but the original EE album was released on his label, and he’s also getting up there in the double-dress and playing the accordion. Then again, he also has not been spouting tripe on the internets and making me facepalm, so I guess that’s a blessing.

  11. Kowalski

    “Being disabled just is”
    How can you write that after defining disability in the ways we are treated in society?
    Disability is a social injustice that can be remedied.
    Without misogyny you’d still be a woman, and without racism Obama would still be black, but without disablism, we wouldn’t be disabled, we’d just be impaired like everybody else.
    The reason I’m so nitpicky about that is that barriers and injustice comes from exactly these attitudes you describe, people think there’s something wrong with *us* and not with the way we are literally disabled.
    Saying disabled just is is like admitting that there’s nothing that can be done to change that.
    .-= Kowalski´s last blog ..In which I introduce a new word and defend Kevin Rudd, the man who eated his earwax =-.

  12. Kowalski

    See, this is so frustrating, and exactly what I described in the comment I left a few minutes ago on the ‘splaining thread.

    Yes I did actually read the whole post, and I also comprehended it and I did understand the context.

  13. JMS

    People who are living as, or who have lived as, conjoined twins are people with a physiology that appears once in 200,000 live births.

    It is certainly possible to imagine a society where people with this rare physiology aren’t discriminated against, where they can easily find accommodation and ergonomic/assistive devices, and where they receive health care that’s responsive to their unique needs. However, we don’t live in that society, and right now people born as conjoined twins experience disabilities.

    I guess it’s easier for Palmer and Webley to “other” someone’s disability if it’s infrequent enough in the population that they don’t personally know anyone who’s living with it. But why does that make it any more acceptable than othering disabilities experienced by larger percentages of the population? If Palmer and Webley created, and posed as, characters based on Ray Charles (incredibly talented blind pianist and songwriter) or Wingy Manone (incredibly talented trumpeter and bandleader who had one arm), would people be as quick to defend them?

  14. Anna

    Nomie, for me at least it’s based partly on the fact that Jason Wembly doesn’t appear to be all over twitter and a blog entry talking about this. He may be – no one has linked me to a place where he’s talking about it – but overall the person who seems to be both putting this out there, and getting very defensive in reaction to criticism, is Amanda Palmer.

  15. Dorian

    So, for those who mentioned Webley, Neil Gaiman (who I still follow on Twitter, more out of inertia than anything) RTed this link to a blog post by him (Webley) on this subject: http://www.bit.ly/b0tbCn

    Way too tired to unpack it myself at the moment. My gut reaction is that it’s more reasonable than Palmer’s response (or lack thereof, ugh) to criticism, but still problematic in several ways.

  16. linkspam mod

    Your post has been added to a linkspam round-up.

  17. Eucritta

    delurk

    Why do they snigger and smirk as they talk about “the twins” and their tragic tale? They do this – you do this – because you do see these bodies as Other. Fascinating, bizarre, freakish. Fodder.

    Yes.

    This project could only be conceived, could only exist, within an ableist space, and is – I think – a form of Orientalist fantasy, appropriative, exoticized, and eroticized – the last, in an especially obnoxious form, the twins as an embodiment of the virgin/whore.

    And as for what’s problematic in Jason’s response … it’s a non-apology, but what bugs me about it is that, in his defense, he mentions that he did consider that cojoined twins might consider it offensive but hoped they wouldn’t, and he’d ‘spent a lot of time absorbing writings by and about historical conjoined twins, especially those who had lives in show business ….’

    Translation: ‘Hey! I meant well! I did research and stuff! And I’m really sorry if it offends anyone!’

    Urk.

    /relurk

  18. Sarah

    If it were possible to smack someone through the Internet, I would be tempted to smack all of those people who keep saying “it’s just art,” “art is meant to be edgy,” etc. Way to miss the point spectacularly. Ditto for all of the people who are saying “I’m not disabled, but I don’t think this is a problem….”

    Jason Webley’s response is, like Dorian said, problematic, though still preferable to Palmer’s nonsense.

  19. lauredhel

    Sarah: please take note of this aspect of our comments policy:

    Here are some examples of unacceptable content: [...]

    Language suggesting violence: including any remarks, however ‘hypothetical’ or well-meant or untargeted, that people should be raped, beaten or killed in retaliation for ableist or antifeminist behaviour. (Or for any other reason.)

    Thanks.

  20. KC

    For those looking for a response from Amanda, this was posted today:

    http://blog.amandapalmer.net/post/396762227/evelyn-evelyn-drama-drama

  21. Nomie

    Because referring to the legitimate concerns of a marginalized group as “drama” is totes going to help things! And that’s just the title!

    *facepalm*

  22. hsofia

    Disappointed by Amanda’s response. It’s a long post about why she isn’t a mean, nasty good for nothing person and how an artist must follow their dreams. I couldn’t identify anything which indicated she’d learned anything or come away with new thinking about disability. I totally understand that it can be hard (especially with it being three years in the making, and a labor of love and all) to come to the conclusion that what you’re doing isn’t maybe the best thing you could be doing … but my (small) hope wasn’t that she would come to a conclusion per se – only that she would engage with these ideas and start down a path of trying to understand where other people are coming from. But she seems to think she needed to decide right now whether she was right or wrong and she’s made her decision and that’s it.

  23. Dar

    I said it as AFP’s blog and I’ll say it again here – this fake “freak” show is offensive on all fronts.

    Most offensive is the poor singing and playing, the purposefully mis-hit notes and awkwardness with the instruments. We’re meant to laugh at their badness (including his ineptness at being a woman). They’re supposed to be bad because they are disabled, hence incapable of any better.

    No, wait – the most offensive part is two grown women with the same name and basically the same personality (she says in her blog that there are slight differences but you have to get to know them very well to see them.) Except one of them is played by a man, and he looks nothing like a woman, and they look nothing alike, so we’re supposed to laugh at that too.

    No, wait – the response of so many – “Are any of you people criticizing this actually conjoined?” That’s most offensive. As if you are not allowed to voice the opinion that something is offensive unless you fit the exact criteria of the… oh, for the love of… see! I can’t even finish the sentence.

    I’m saying this as a person with disabilities, as a woman AND as a twin. (And even as a shy, not-very-good musician and singer.) I wonder if that qualifies me to speak on the matter to these people.

  24. art, activism, feminism, and the possibly impossible coexistence thereof « Metrophobic

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  25. Stylishb

    It’s ok..the people talking about rape and Jesus are probably just being artistic.

  26. dar

    First, a huge round of applause to this:

    “It’s our aaaaaaaaaaaart, and your reaction is yours, right?”

    For any disability, you will find someone with that disability who does not consider it a disability, and many more without it who will say it’s not a disability. Sometimes that is pure denial. (One of the commenters on AFP’s blog goes to great lengths to proclaim himself NOT disabled, then goes on to talk of years of fighting depression. Huh?)

    In this case, I’d say it’s pure hogwash. It’s clearly a disability. I can’t think of any criteria at all under which being a conjoined twin would not be considered a disability, unless it were in some magical mythical kingdom where everyone is truly equal and gets whatever accommodations they need without question. Disability is a societal construct, so theoretically we should be able to get rid of the construct, but it has always been around, and there have been precious few societies in which people with disabilities are considered ‘equal’. (Frankly, there are some people without disabilities to whom I’d rather not be considered ‘equal’, thank you very much.)

    I watched the video on youtube of the live performance. It was painful. (And I know pain. *snare roll*)

    The women are supposed to be funny because they are awkward, and they are awkward because they are conjoined. They are shy because they’ve been abused because they are conjoined. They have been unable to thrive because they are conjoined. Their disability is played for laughs, pure and simple.

    I realize it’s supposed to be some throwback to vaudeville, but the backstory is so inconsistent and one-dimensional there is not even a hint as to how these women would have any knowledge of vaudeville. So it’s not even plausible in its offensiveness, if that makes any sense.

    (OMG aside – she says she gave the women a “small advance” and they were able to move into a nicer apartment. Pennies to the crips. There is no end to the fail.)

    Sorry. Got off topic again. There is just so much to be distracted by in this mess.

    Not only do conjoined twins have a disability, it is in no way an insult to say so. It’s such an insidious, common attitude that disability is something to be ashamed of. The offensiveness of that attitude gets lost in all the other offensiveness. It should be noticed and soundly denied.

    (And sorry for harping on the twin thing, but I am so fed up with twin crap. I get along with my twin just fine, but we are not the same person and should never be lumped together.)

  27. That Stuff on Your Shoe… « random babble…

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  28. Brooke

    Given that Amanda is a rape survivor, is she REALLY down with fans leaving rape threats on her blog? Consider me astonished.

  29. J

    I don’t think it’s insulting to say that conjoined twins have a disability. I think it’s incorrect.

  30. Rosemary

    For what it’s worth, I’ve been going through and flagging any comments over there that are threatening in any way whatsoever. I haven’t gone through all 800 some comments over again to see if anything has been done about them, but you know, when the blog poster herself specifically asks people not to be mean to “the haters” (which I won’t even get into WHY that is so problematic and Just Fucking Wrong), it SHOULD be seen as a Bad Thing to then go on ahead and call the haters/critics/people trying to voice their concerns names and threaten them. Clearly, these so-called fans don’t even give a shit about the person they are a fan of and respecting that person’s wishes. So, yea.

    And sorry. I’m feeling especially ranty about all of this right now.

    And WOW. I’ve been too scared up until now to go look at any of the youtube vids, but now that I have, how in the HELL can people say they are not trying to make fun of, mock, or make light of these characters they invented? Seriously? Seriously?!?!?!!?

    I can’t help but to think that if actual conjoined twins went up there and sang those same songs in the same manner that it actually would be fun and amusing. Because we would be laughing WITH them and not AT them and that makes all the difference in the world. That’s a huge part of what makes crip drag unacceptable. Because, if, on the other hand, Amanda and Jason had done a lot of research and talked to a lot of conjoined twins and came up with a realistic show in which they were presenting to the world what it can feel like to live in that situation and there were, of course, some funny moments because there are funny moments in everyone’s lives, but it was fully drawn out and fully realized, then yea, that’d be okay too. Still quite likely problematic in areas, but not nearly as offensive as all of this is.

  31. sundiszno

    I wish I could do this more articulately, but thank you so very much, lauredhel and all of the other insightful, amazing writers who have written here and on your blogs about this mess. I get overloaded and shut down just trying to sort through my thoughts on things like this, but I can’t say strongly enough what a tremendous difference it makes to be able to come here and read your words. Thank you.

  32. Elizabeth

    Hi; I’m a first time reader who came here to comment on the Evelyn Evelyn article. I’m an autistic feminist and circus sideshow historian. I’ve managed the sideshow biography site Phreeque.com since 2001. I really appreciated the article and its this follow-up and I more or less agree with the author, but I’d like to contribute my very specialized knowledge on one specific point.

    The freak show genre has historically been very empowering of disabled people, especially in premodern times (when the alternative was life in an institution or as a shut-in). If anyone was exploited in freak shows, it was the uneducated masses who paid money to satisfy their baser instincts; the freaks themselves often amassed huge fortunes and lived happy productive lives in the off-season. Freak shows provided opportunities for independence, not only for the disabled but for women and queer people as well, that existed nowhere else in society at the time. So the very fact that this musical group is referencing sideshow is NOT, in itself, ableist.

    I’d also like to say that there essentially are no real conjoined twins anymore, thanks to medical normalization. There are four living pairs of adult conjoined twins in the world today. Four. This portrayal is definitely not accurate, but even if they were interested in making it accurate, it’s not like there were tons of people they could have asked for advice.

  33. Brooke

    @Elizabeth – if it was empowering for the disabled people who participated in sideshows, then that was a result of them choosing to share their stories with the public. They didn’t co-opt someone else’s story for financial gain, they had a voice and decided when and where to use it.

    Also, while there may be very few people who have this specific disability that EvelynEvelyn has, they could have asked tons of people for advice by asking, “Do you have a condition that society marks as unusual or gawks at or treats as something strange and freakish? How do you feel about this project idea?” It doesn’t take having a conjoined twin to understand how it feels to be marked as “different” by others.

  34. JMS

    Elizabeth, four of the people living as conjoined twins live in the US. The Schappells have been the subjects of a documentary, and one of them is a singer and songwriter.

    Think about that for a minute. There is a singer/songwriter who is currently living as a conjoined twin, and that person (who has recently made a name change from “Reba” to “George” so I don’t know which gender pronoun that person prefers) has had to struggle for attention, perform at open mike nights, etc.

    And yet Amanda Palmer and Jason Webley are masquerading as conjoined twins for shits and giggles, and getting far more attention than George Schappell, who lives with the challenges of this infrequent physiology EVERY SINGLE DAY has ever gotten.

    It’s not more OK to masquerade as a person with a disability if it’s a rare disability. Remember, this project isn’t drawing fire because it’s “referring to” people living as conjoined twins—it’s drawing fire because Palmer and Webley are MASQUERADING as conjoined twins.

  35. Rosemary

    Elizabeth – thanks for sharing some of your insight. I think you might be missing what some of the objections about this project are, however.

    “The freak show genre has historically been very empowering of disabled people, especially in premodern times (when the alternative was life in an institution or as a shut-in).”

    I can imagine it was very empowering if the other choice was life in an institution or as a “shut-in”. Because it was the better of those choices given. Which does not mean it was a necessarily GOOD choice. If I had the choice between being forced to live my life apart from society, forced into a institution where I will likely be mistreated and handled like a “freak” against my will, or choosing to go into an entertainment career where I got to present myself as a freak for profit and the feeling of getting something over on other people who see me as freakish ANYway, yea, I’d choose the freak show. But wouldn’t it be so much better if I got to choose to do things that didn’t put my differences on display as freakish and horrifying and entertaining and instead got to follow other career options and passions??

    “So the very fact that this musical group is referencing sideshow is NOT, in itself, ableist.”

    It is not that they are “referencing” sideshow. It is that they are recreating the affects of it not only by furthering the idea of disability/conjoined twins/different bodies as freakish and entertaining, but also by performing it themselves as abled/non-conjoined twins/”normal” bodies who can take the costume/identity off any time they wish, and who seem to think the whole idea is something funny and silly to entertain other abled/non-conjoined twins/”normal” bodied people. It is Very Much like black face.

    “I’d also like to say that there essentially are no real conjoined twins anymore, thanks to medical normalization. There are four living pairs of adult conjoined twins in the world today. Four.”

    There are essentially no “real” conjoined twins anymore, except for the four living pairs who are very much real. One pair of whom are actually in the entertainment business themselves and have been a part of many documentaries and interviews, which shows that they are willing to be approached by people who wish to understand their experiences. JMS above makes a really good point about this pair. I wonder how they might have reacted if Palmer and Webley had approached them and asked them if they would like to be a part of this project. You know, Palmer and Webley make up a story about conjoined twins that they personally have helped to promote as musicians. Possibly they could have actually promoted a conjoined twin’s career as a musician instead of dressing up in a freakish parody of them for laughs and their own career promotion.

    “This portrayal is definitely not accurate, but even if they were interested in making it accurate, it’s not like there were tons of people they could have asked for advice.”

    In Wbeley’s blog post, he says that he spent time researching historical conjoined twins. He also admits that he was scared that the few living conjoined twins in the world today would be offended by the project but hoped they wouldn’t be. This tells me he had the foresight to understand that the project was possibly offensive, that he knows there are conjoined twins living in the world today, that he was willing to do as much research as that but failed to go far enough to bother even attempting to discuss the project with any of them.

    Not to mention that there are other people living who were born conjoined and have been separated and who also could have been contacted for input. Not to mention all of the friends, family, and loved ones of people who either currently are or were born conjoined.

    Not to mention all of the many many many people living in the world who have bodies that are othered, looked upon as freakish, and who have had similar life experiences.

    Just some food for thought.

  36. Donna

    JMS, also George Schappell was named Dori at birth, but changed hir name to Reba because sie didn’t like having a name so close to hir twin’s (Lori and Dori). That’s another thing that is problematic about Evelyn Evelyn, many twins do want people to be able to tell them apart including conjoined twins. There is a youtube of the Hensel twins where they say this too, so both sets of US conjoined twins want to be recognized as individuals with their own personalities, likes and dislikes, etc. But not Evelyn Evelyn, they are indistinguishable in every respect including the same name!

    And Elizabeth, this is from one of their press releases: “When I first heard their songs, I was astounded at the sheer, raw talent and super-clever songwriting,” says Palmer. “But when I found out they were actually conjoined twins who had spent their lives trapped in the circus industry, I wanted to help them reach a new audience.”

    Trapped doesn’t sound like they were empowered. So far their “freak show” has been exploited in child pornography, and in a circus, so now they have Amanda and Jason to “save” them.

  37. Donna

    One thing I haven’t seen is anyone talking about the racism and sexism/misogyny in the video for “Have you seen my sister, Evelyn?”

    —possibly triggering—

    The video portrays yet ANOTHER sister Evelyn, this one happens to be a woman of color. How the two little blonde white girls have a WOC sister is another question, maybe in a circus all the performers are “family”. By the end of the video this Evelyn gives the finger before she beats up a bare breasted showgirl and then is raped/has sex with a monkey while smoking a joint. In the lyrics she is called a floozy and ho-bag. I’m not kidding. Yes, scary angry aggressive over-sexed slut druggie WOC….they didn’t miss any of the stereotypes.

  38. Donna

    You’re right. I could have sworn I first saw that video because of a link from AFP’s site but I can’t find it now. I did find this:
    http://alexdecampi.livejournal.com/98227.html

    That’s the director of the fan video. He got permission to use the song and it looks like he got permission to screen it at some festival in Italy and has her personal email address. I’d say she’s aware of the video and has not offered any objections to it. Who is this indeciSean? I see him everywhere defending AFP and assume he’s some employee, PR flack, manager, or something like that?

  39. T-is-me

    I’m finding these discussion extremely enlightening, and whilst I don’t have anything to add (as I’m in a position of relative privilege, being a white, able-bodied woman in a western country), I wanted to acknowledge all that this blog and these posts are teaching me. Please don’t stop writing – I see the comments section on another AFP post was closed, and was sad for the author – the defeat was palpable at the end of the thread. I am, in fact, writing to let you know that you’re teaching *this* fish to see water.

  40. 22nd Down Under Feminists Carnival « Fuck Politeness

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  41. For your consideration « Ham Blog

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  42. Alex de Campi

    Donna: psst, the director of the video (me) is a SHE not a he. *sigh*, everyone assumes film directors are MEN.

    The video was meant to portray two little girls who thought bad thoughts about their older sister (as portrayed in dream sequences)… but in the end the sister was completely innocent of their suspicions/fantasy accusations, and in fact was just off taking a nap. Its message was in fact NOT to judge people, and to give them the benefit of the doubt! Other than that, the story was pretty much taken directly from the rather scatalogical lyrics.

    When we made the video for Amanda and Jason (soon after I directed her “Leeds United” video), we did not know about / Amanda had not yet made up the background of the twins as survivors of abuse. Just to note, we are completely NOT down with that.


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