Tag Archives: normal

Recommended Reading for July 13, 2010

Problem Chylde at Feministe: Storytelling as a Radical Act

They won’t speak out for fear of losing something: losing a relative, losing control of their lives, or losing their stories. To them, it’s not a myth that their stories will be repeated without their names to guide them. Anyone can pick up a textbook and read case studies about H, a 26-year-old African-American woman from X with cerebral palsy, or see pictures of happy smiling children online referred to as “happy smiling children in the Y mountains/Z desert/Q farmland.” These people — their bodies, their plight, their stories — are Other. No names in the street, in the book, in the mind, and people only recently have been asking why they are nameless.

Jeannine Stein, Los Angeles Times: Movement therapies may reduce chronic pain

Movement-based therapies such as yoga, tai chi, qigong and more mainstream forms of exercise are gaining acceptance in the world of chronic pain management. Many pain clinics and integrative medicine centers now offer movement-based therapy for pain caused by cancer and cancer treatments, rheumatoid arthritis, fibromyalgia, multiple sclerosis, and other diseases and conditions.

lisa at Sociological Images: Norms, Normality and Normativity

Sociologists distinguish between the terms “norm,” “normal,” and “normative.”

The norm refers to what is common or frequent.  For example, for Christian Americans, celebrating Christmas is the norm.

Normal is opposed to abnormal.  Even though celebrating Christmas is the norm, it is not abnormal to celebrate Hanukkah.  To celebrate Hanukkah is perfectly normal.

In contrast to both of these, normative refers to a morally-endorsed ideal. . .

Wheelchair Dancer: Equivalencies:Days 2 and 3

We use equivalent to suggest that two separate and often very different things are the same, or, at least, of equal value. But the very insistence on equivalence underscores the potential for the thing that is being compared to be somehow less than the original. Rather than “same but different,” it’s more “different but same.” My mind jumps to “separate but equal.”

Thoughts On A Book: Scott Westerfeld’s ‘Uglies’

Spoiler Notes: This post does contain some spoilerish material about Uglies. If you haven’t read the book yet you might want to wait to read this because it mentions a big reveal which is rather central to the plot! I have isolated it in its own spoilery paragraph for the benefit of those who would like to go ahead and read this anyway.

I recently finished Uglies, which isn’t about disability, but does have some themes which I think are disability related, which I used as a justification for writing about it here because I think it’s a really interesting book and it touches upon some intriguing themes and material. It’s actually the first in a series, as I learned when I got to the end and was like “but what happens next?!” and then saw the bit advertising the next book in the series.

The world of Uglies is one in which everyone is surgically altered at 16 to look more or less the same. To look, in fact, “pretty.” This homogenised society is supposed to be less filled with strife and argument because everyone is beautiful and has also had the experience of being “ugly,” and the logic of the modifications is very much based in evolutionary psychology; people are modified to be highly symmetrical and to appear “vulnerable” and so forth.

When the story opens, we are introduced to the lead character while she is still an “Ugly” and eagerly looking forward to the surgery. But she meets another character who introduces her to an alternative: Running away to join a community of people who do not undergo modification. This character, Shay, is very opposed to the very idea of modification, even repulsed by it. Our hero just wants to be pretty and go to all the pretty parties and is very resistant to the whole idea.

As a reader, I immediately felt a parallel here with cure evangelism. In the society we live in, it is assumed that everyone wants to be cured and in fact cures are forced upon us, just like the surgery in Uglies. “It’s for your own good,” the argument goes, and ample arguments are mustered to show you how terrible things will be if you are not cured. In Uglies, children are taught from birth that the worst thing in the world is to be “ugly” and they are presented with “Pretties” as models of perfection.

The “Uglies” give each other nicknames based on supposedly ugly aspects of their bodies. They bodyshame themselves and each other and eagerly look forward to the time when they will be “Pretties.” Once Prettified, people are modified later into Middle Pretties, once they reach adulthood and start working, and then again as they transition into old age, but naturally aged people don’t exist. A society of perfection is hardly a new thing in science fiction, but it’s still interesting to see how different authors play with the concept.

One of the great parts of the book is one in which some sly arguments against evolutionary psychology are presented. Our lead character, Tally, insists that she’s genetically programmed to like the Pretties and that it’s just natural, and one of the characters who  has chosen not to be modified is highly skeptical. As she’s arguing with him, she starts to realize that his unchanged body actually has some appeal of its own despite the fact that he is an “Ugly.” He points out that she’s been taught and trained to hate herself and that her “Ugly” body is actually beautiful in its own right, and she starts to think about how maybe the things she hates about herself are things which will resolve as she gets older and grows into her body.

[Spoilery paragraph!]The big reveal in Uglies is that the surgery doesn’t just modify the body. It also alters the mind. Most people who undergo the surgery are left with  lesions which change their personalities, literally taking parts of themselves away. This, too, reminds me of cure evangelism. It is assumed that a cure holds no costs, that people remain themselves after being cured and thus that everyone should desire to be cured, when in fact this is not the case. The book also points out that some people die during the surgery, just as some people die in medical treatment; these decisions are not without costs.[/spoilery paragraph!]

Uglies unfortunately doesn’t touch upon racial issues very much. I’m hoping that this changes with the series because it seems like an obvious thing to explore in a book series about a society which is homogenised to an extreme degree. Uglies seemed to be leaning in the direction of a whitened world, and I would really like to see some people of colour introduced in later books; the story of this book has parallels with both racial identities and disability, and the erasure of both, along with cultural assumptions about erasure being beneficial or even desirable.

At its root, Uglies is about norming and insisting that everyone fit into that norm, no matter what the cost might be, and having people outside the norm challenge this social attitude. I know that’s something which resonated with me as a reader, and I suspect that the same might hold true for some of you as well.

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

[Cross-posted to Hoyden About Town]

Something that has really struck me about the conversations around Evelyn Evelyn is the reaction that “Conjoined twins don’t have a disability! To say they do is insulting!”

Not all commenters make the link between the two statements – some stop at the first – so I’ll take these two separately.

A little background: Evelyn Evelyn is Amanda Palmer and Jason Webley’s new ‘art project’, presented as fact but understood as fiction, in which they “discover” poor struggling musically-gifted conjoined twin orphan women, save them from their child porn and circus-exploitation past, and help them – in a long drawn-out process, due to the women’s traumatic fallout and difficulty relating – produce their first record. Palmer and Webley dress up as the twins to perform on stage, co-operating to play accordion, ukelele, and sing. They can barely restrain their sniggers while they interview about this oh-so-hilarious and edgy topic. More in the Further Reading.

“Conjoined twins don’t have a disability!”

So, a note on normalcy. The idea that some people would shout in defence “But conjoined twins don’t have a disability!” took me by surprise. I wonder how these people are defining “disability” in their heads, if they’ve ever thought about the subject – do they picture a hunched figure, withdrawn, unable to work, self-care or socialise? Do they picture someone undergoing huge medical procedures, someone with prostheses or other visible aids? What is the image in their heads?

Because disability can be all of these things, and none of these things. Disability isn’t a checklist, or a fixed point. Disability – and normalcy – are socially constructed. Disability is the interaction between a characteristic or a group of characteristics often called “impairments”, and a world that recognises people with these characteristics as abnormal.

Disability is considered a tragedy, a fate to be avoided at all costs. Disabled people are those that society defines as “abnormal”. Disabled bodies are the ones that don’t fit in typical boxes. Disabled people are people that the physical and social environment doesn’t accommodate. Disabled people are considered defective, deformed, faulty, frightening, feeble, freakish, dangerous, fascinating. Disabled people are stigmatised, laughed at, looked down upon, marginalised, Othered. Disabled people are medicalised. Disabled people are defined in terms of how currently-nondisabled people view them.

Disabled bodies are those that are subject to the able-bodied stare.

It is obvious with the most cursory of glances that in our society, conjoined twins are disabled. Society does not accommodate them. They are medicalised from fetushood. They are spectacle. Their operations are videoed and broadcast across the world. They are displayed, tested, stared at, discussed, and mocked, purely because of the shape and layout of their bodies. They are the subject of comedy fiction and “inspiring” tragedy nonfiction.

How can people simultaneously look at this project as funny and edgy and worth paying money to stare at, while considering conjoined twins to be “not disabled”? Why are their bodies so hilarious, then? Why is it so funny when Palmer and Webley cripdrag-up in that modified dress? 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.

People with disabilities resist these definitions, resist being marginalised, Othered, stared at, compulsorily medicalised. (Just as we try to resist, where possible, being beaten, abused, raped, exploited, exhibited, forcibly sterilised.) We laugh at ourselves plenty. We reclaim terms like “crip” and “gimp” and “crazy”. This does not grant able-bodied people free rein to mock us, to play schoolyard imitative games, to use child porn survivors as a little bit of “colour” for their projects.

There is a lot more to be said on the social construction of normalcy. I strongly recommend Lennard Davis’ Enforcing Normalcy . For more reading, check out this booklist at Hoyden About Town, our booklist here at Disabled Feminists, and our blogroll.

“To say that conjoined twins have a disability is insulting!”

This one’s quicker and easier to debunk. No, it’s not insulting. It’s as simple as that. It’s not an insult because being disabled is not an inferior state. Saying that someone is disabled is no more insulting than saying “Lauredhel’s a woman” or “Barack Obama is black”.

Being disabled just is.

~~~

Further reading on the Evelyn Evelyn conversation:

Annaham’s post here at FWD, Evelyn Evelyn: Ableism Ableism?

Amanda Palmer’s blog: The Whole Story Behind “Evelyn Evelyn” [WARNING: invented story about child sexual abuse and exploitation; the other links discuss this also]

Amanda Palmer’s blog: Evelyn Evelyn Drama Drama

Jason Webley: Blog #1 – Evelyn

Amanda Palmer’s twitter, in which she remarks “setting aside 846 emails and removing the disabled feminists from her mental periphery, @amandapalmer sat down to plan her next record.”, and follows up “pain is inevitable. suffering is optional.”

SPIN magazine: Meet Amanda Palmer Proteges Evelyn Evelyn

Sady at Tiger Beatdown: AMANDA PALMER WANTS TO SHOCK YOU. Just Don’t Get Upset About It, ‘Kay?

TVTropes: Rape Is The New Dead Parents

The linkspam roundups: First, Second, Third (and possibly more as time goes on)