Week 9--reimagining disability

Anne Dalke's picture

This Tuesday, with lots of help from Rosemarie Garland-Thomson, we will be reshaping, rethinking and redefining disability. Reflect aloud here on the "counterlogics" offered by feminist disability studies for one of these current questions:

  • cosmetic surgery and prosthetics
  • women following the social mandate to pursue beauty
  • the choice to abort fetuses with disabilities
  • the liberal ideology of autonomy and independence
  • the exclusionary, essentialist oppressive aspects of the unity of the category 'woman.'




Flora's picture

marie curie

"Be less curious about people and more curious about ideas."

"In science, we must be interested in things, not in persons. "

Marie Curie, one of the best discussed woman scientists in American biology textbooks, said these words. When reading and thinking about disabilities studies, I can't help but think about attitudes similar to Dr. Curie's still prevalent in academic, industrial and biomedical scientific culture. To riff on the feminist icon an online quiz picked for me (Emma Goldman: "If I can't dance, it's not my revolution), "If I'm not concerned with people, it's not my discipline." Much of what I identify with in Garland-Thomson's argument is a rejection of a top-down decision that does not consider a person's autonomy. I would think that this argument is one that everyone can relate to. Who wants to have misinformed, ignorant people make decisions for them about crucially important life decisions, after all?

Flora

hslavitt's picture

Honestly, this is the topic

Honestly, this is the topic that made me feel most out of my depth. I don't have any inkling what it's like and I feel like that excludes me from this conversation in a way more different and drastic than before. I'd rather listen and maybe it's a cop-out but this is one time that I feel like participation in the conversation would not actually be the most useful.
Anne Dalke's picture

feminism and disability

Katie Baratz (a recent Haverford grad who has shown up in this course before) sent me a link to an article that appeared in the NYTimes Magazine last week about euthanasia.

Of particular interest to our discussions in this course are the invocations in the center of the piece about feminism and disability. Women, who have conventionally been caretakers, might be especially likely to request assisted death, when they become so disabled that they are the ones who must be cared for. The article also observes that many of the disabled are "self-oppressed"; that "people with disabilities will think, 'I should give up, die, disappear for everyone else.'"

The essay ends with two (I think contradictory?) claims: that, otoh, being spared "protracted and harrowing intimacy with degeneration and death...would be our loss"; and, otoh, that having "the power to escape" might be worth more than...
anything.
Anonymous's picture

As I mentioned in class, I

As I mentioned in class, I have recently read Nancy Mairs' essay "Waist-high in the World" for my CSem class and it really blew me away. Not only does she write about the medical and physical consequences of having a disability, but she also talks a lot about the SOCIAL consequences of having a disability...

I guess coming into the few classes that we discussed feminist disability issues and politics, I was prepared for to come out of class feeling...rather horrible to be perfectly honest. When I clicked on the link that Lydia posted, I, like Anne and many others...was shocked when I saw this two year old girl who had eight limbs. Yes, I am very embarassed to admit that, but it's the truth...and I can't stop thinking about WHY I had this reaction. A part of me wants to agree with what a lot of people in class seem to say: why should people have to fit this mold of this so-called normalcy? Why should people have to feel the pressure (from "the gaze" or other) to change themsleves via cosmetic surgery or reconstructive surgery? I don't have an answer to that...and I'm not exactly sure if there ever will be an answer or solution. Much of the feminist disability issue is about categorizing and de-humanizing. It's about NOT using the category "disability"...but I feel like it's inevitable, and if for some reason it didn't exist, then I feel like there would be an issue of not recognizing disabilities enough. It seems like I have brought the whole thing about "othering" into this. Gah!

Pemwrez2009's picture

Disability?

To be a woman, is to be disabled? And to be a disabled woman, is doubly disabling?

So, I guess, I struggled with these "feminist disabilty politics. I am a diehard feminist and will be forever, however, I struggle with feminist ideas that seem to neglect a discourse of trust. If a woman has to get a mastectomy, does that mean automatically that if she wants reconstructive surgery to re form her chest, she is conforming to a pressure to look a certain way for the "male gaze"? Althoguh it seems important to me to always question why someone wants to do something for themselves that involves drastic change, why do we push so hard on the women who have made certain choices for themselves? Also, isn't passing up on reconstructive surgery a choice as well?

Disabilty politics/feminism is also even more complicated as we look at disabilities that are visible vs. invisable. There are many people that are not recognized as disabled. That just goes to show you how dependent we are on what we rely on our eyes for.

So, do we change society to fit our needs, or do we change ourselves to fit society's needs? So, of course I think society needs to do much more work on finding that passion to become les obsessed with the "norm" and do things that cater to communities that have been subjugated as a result of their impediments. However, I take issue I suppose with trying to cancel the problem, it almost does seem like a eugenics movement to develope implants for the hearing impaired. Maybe it should be up to the hearing impaired community, or maybe it's good that we have ear implants, but a people should be able to choose for themselves as to whether or not they are interested in that sort of change.

Lastly, the selfish thing.

I apologize for not having posted earlier, especially on this one, but it's been a really rough time for me.

So, having a child is selfish. (and honestly, it's not that I'm against having a baby, well....i will never birth a child, however, on a very basic level...i guess....i feel this way)

1) there are so many children that need homes, and we are so concerned with having children that (look like us, have our manerisms, and are extensions with ourselves) that we forget about how privileged we are to even be thinking about having a child

2) When we are deciding to have a baby, (well this may be a confidence thing as opposed to a selfish thing)..however, we are seeing ourselves as fit to be parents (and yes....i am sure that we are fit to be parents...well....maybe not now, or maybe yes!) But, the idea is that we are selfish enough to want a child so badly, we may have a higher sense of ourselves

3) Why do we have babies? So we can have a legacy? So we can raise a child to be just like us? So we can have the experience of raising a child? Doesn't it seem like these are all reasons that have to do with us, more than they do, the actual baby?

..........................

Class summary : Novemer 8, 2007

- Lakshmi Discussion: emphasis on flesh and muscle, vs. bones and scientific structural anatomy (which is more powerful)

- Demonizing of the Norm? Is the norm wrong for trying to keep us a certain way? (Is it us, our culture, our parents, our doctors?)--is Lakshmi's surgery imposing western values?

- Importance of cultural contexts:

-biological anomaly

- important to be aware of normative presumptions

Tamarinda:
"To be a woman is to be disabled in our normalizing culture. Is this society's attempt to 'disable women'? Or, are women being promoted by this idea?"

(I really loved when you said this in class)

-Why is there something wrong with having and living with our disabilities?

-When are categories useful? When are they dangerous?

- Society's mold = dangerous, we must steer clear of our own notions and others' notions of normalized individuals.

-We are obsessed in society with this culture of "mistake, error, abnormality, and fix it"

- Are we ever really acknowledging our differences and/or our privileges?

- Temporary vs. Perpetual Disability

- Visible vs. Invisible disabilty

- Can we function in scoiety if we tailored our environments to cater to everyone?

2)

Anne Dalke's picture

what is the value of beauty?

During our discussion, on Thursday, about "beauty as the last restrictive institution," I mentioned a relevant short story, and promised you the cite. It's Ted Chiang's "Liking What You See: A Documentary," in his collection, Stories of Your Life and Others:

"Evolution gave us a circuit that responds to good looks – call it the pleasure receptor for our visual cortex...in our natural environment, it was useful to have."

The question the story plays with is whether it's wise to abolish the discriminative category of beauty: what value does it have, as a mechanism for survival, proliferation, pleasure??
Anne Dalke's picture

Naming the disability

Following up on YJ's thoughts about the intersections of disability and race, I thought folks might take an interest in the February 16, 2003 New York Times Magazine article in which the disability rights activist Harriet McBryde Johnson describes her Day as a Token Cripple; you'll see it's hosted on a website for "anyone seeking progress in racial reconciliation." You may also find of interest both McDermott and Vareene's Culture as Disability, and Varenne's follow-up essay (written especially for Serendip!) On the Inevitability of Cultural Disabilities.

YJ's picture

Cultural Concerns

I was thinking a lot after class about why I am so introverted during class and something I think I've been meaning to articulate, but never fully realized until this class is that yes, I am naturally introverted and quiet but there is also a cultural element. I was raised by very traditional Korean parents who have taught me to always obey authority and to always be respectful for authority figures as well as anyone older than you. In fact, one of the worst insults to hurl at someone in Korean culture is to call them "disrespectful." Of course, they didn't teach me to blindly obey authority, but that part of respect is to listen to what others, especially elders have to say. High school was easy in that this fit pretty well with what the teachers wanted in class, (with the one exception of a math teacher who began the 1st day of class complaining about how Asian kids never talked in his class which he really disliked, I never did like that class) but college has proven to be a bit more challenging in that it seems most professors like the people who speak up and are very extroverted.

The other thing about being quiet for me is that I always feel this immense pressure to say something brilliant or insightful whenever I speak-a pressure partly self-originating, but partly also from past experiences with racial stereotyping ("oh Asians are so smart" blah blah blah). My greatest fear- which has only been exacerbated since coming to Haverford-is to sound stupid. Intelligence was another thing that was highly prized in my family, my sister a genius and true intellectual, my brother smart and witty, and me, the one who almost failed 2nd grade. Naturally, I always feel incredibly self-conscious when I speak and I always reshearse in my head what I'm about to say a million time before I actually say it. Of course, by the time all that's happened the topic of discussion has usually moved on.

What I did want to say in class today but didn't b/c the conversation had moved well beyond this topic, was that it's interesting to think about the parallels between disability studies and race. The notion of identity politics concerning race is unquestionably tied to the notion of racial/ethnic pride-a "colorblind" policy is racist because it denies what is for many people of color a significant aspect of their identity and what they rightfully take pride in. It made me think about how that operates differently for people with disabilies-especially visual disabilities-(much like the visual aspect of race) are almost assumed to be shameful or are not supposed to take pride in their disability. And I say-why not? If having a disabiltiy is a large part of your identity-but not everything you are of course-then you should take pride in yourself. Just as with race, you can't choose the color you're born, you also can't choose the body or mind you're born with. I think naming the disability in that kind of culture could be much more accepting and more akin to the non-colorblind society P. Walker (and myself) prefer.

The other thing though, is that even as I have benefitted from thinking through some of the issues of disability studies by comparing it to racial issues, I do worry there is a danger in losing something when we do so. In other words, in using disabiltiy studies as the lens to look through feminism, racism, classism, we may be potentially limiting what we can or do learn about both disability studies and the "-ism" we are studying. There is a seeming incompleteness there and I think it's important to acknowledge those limits in using so many different lenses and when comparing different "-ism" expereriences (although I know I'm being hypocritical when I just did it myself in the proceeding paragraph).

Ann Dixon's picture

visibility of identity

YJ, I want to apologize to you, first of all. On the day when the class was discussing alums, to encourage not-othering the alums I tried to helpfully point out that "everyone in this class" is a future Bryn Mawr alum. I didn't think about whether anyone is the class was a future Haverford alum, or something else. I'm sorry if you might have felt excluded by my statement.

And to tie my mistake back into the discussion now, it highlights for me how significant the visibility of identity is. One of the themes that is present in our discussions of race, gender, and disability, is whether we "pass" or not. If we identify as mixed race, do others see that? If we identify as genderqueer, do we nevertheless "pass" as a woman? Is our disability visible or not?

Ann '83

Calderon's picture

Martes' Class!!!!

CalderonAnn started the discussion on Tuesday by highlighting some people who have done remarkable things by speaking out about their physical disabilities. Ann named a couple: Aimee Mullins (one of People Magazine's 50 Most Beautiful People), and Ellen Stohl, (a paraplegic actress who appeared as the nude centerfold of Playboy Magazine).  After opening with a positive view of disabilities, we read the poem, “A Women with Juice,” by Cheryl Marie Wade. We began to discuss the poem, and attempted to understand what she meant by her many different descriptions of herself, according to both her own, and society’s views on disabilities.

Alexander suggested that “the way we categorize disabilities is very different from what the medical field categorizes them from.” Tamarinda suggested that the poem was a personal testimony; to describe oneself was so hard because you see yourself so abstract, to be disable in any way is an inaccuracy because it would be what other people tell you. Others were  more concerned about the last sentence: “I’m the women with juice,” and tried to understand what Wade meant. There were many interpretations: energy, electricity, and the flowering fruit, of which juice is made. Now that I am writing about this, I notice that all of these critiques on this specific line are positive. We also thought that Wade chose to give so many vivid images of herself because she didn’t want to be labeled or identified as she often is by society.

After we talked about the poem for a while, Ann decided to separate the class into three different groups: abortion, cosmetic surgery, and beauty. The group discussing beauty said: Having a disability is a disadvantage because…

  • The lengths of disability got them thinking beauty is something valued culturally, but it is not necessarily an enabling quality or disabling quality.
  • The idea of women are twice disabled because we are women and also physically disabled.

 

Abortion

  • Class issues: genetic testing is not available to everybody.

Cosmetics

  • Consider how beauty and disability are parallel.
  • The challenge that reconstruction is not feminist?
  • There are two different cosmetics: reconstruction, and self-esteem.

 

The last comment was Alexander’s (which I hope she writes or talks about) on how having a child is a selfish act.

 

2 weeks have a six-page draft for the research paper!!!!

 

 

jrizzo's picture

hmm

Garland-Thompson seemed to be introducing disability studies as a field that introduces knew ways of thinking the body, and specifically the recent development of an ability/mandate to change the body we were given to satisfy the "normalcy" requirements of whichever society we happen to be born into.  She seemed to make much of the notion of societal expectations as arbirtrary standards, or if not arbitrary certainly not the only way or the "natural" way.  In class, we jumped right on her band-wagon.  There were allusions to the nefarious medical community, which unthinkingly pushes for "normalizing" surgery on disabled or deformed patients.  I understand the worries of those who felt this was wrong becuase doctors assume that the disabled person cannot live a life that is rich and happy as the "abled" person.  I agree that the exceptional examples of poets, runway, playboy models even, that we encountered were inspiring, but I guess I'm not sure I see what is so terrible about favoring normalizing surgeries when the disabled do now typically have a more difficult situation than those who are not.  To say nothing of legitimate health issues, having some visible deformity and attracting The Stare is not the same thing as being a woman and attracting The Gaze.  The Gaze contains cultural attitudes and dangers that must be addressed and done away with.  People stare at things that are different.  Sometimes gawk.  Sometimes it's very impolite, but the unusual does attract attention.  This does not mean unusual has to be good or bad, but I think this is something undeniable that should give pause to those make blanket statements about the unfortunate situation of the disabled being culturally constructed. 
kwheeler's picture

    While I agree

 

 

While I agree that sometimes “normalizing surgeries” are not "so terrible" (in life threatening cases for example) I think that the issues Garland-Thomson brings up are very important and should be taken seriously (and I do not think she is against life-saving surgery either). What is important to take from this article is the idea of the cultural constructedness and the arbitrariness of the definition of the term "disability". A "disabled" person should be the one to determine when surgery is desirable or necessary, and they should not feel that they should or need to have normalizing surgery in order to be accepted in society and looked upon as an equal, not simply as a disabled person. What if all of a sudden people with brown eyes were considered disabled and ostracized from society, should they change their appearance? The question of accessibility is an important one. If a given characteristic of your body prevented you from participating in an activity because someone who doesn’t share that characteristic dictated the norm, should you alter your appearance so as to be accepted? Individuals should not have to change to fit the "mold" of society; instead society should change the mold (or rather get rid of it all together) so as to accept people of difference.

 

gammyflink's picture

Reimagining Disability

As someone who has traveled to many countries studying their cultures, I am pleased that you have raised the issue of cultural relativism.  It is critical for all of us to recognize that we perceive and judge according to our own background.  In addition to the examples you provided, I can attest to the fact that people with seizures often take on the role of a revered shamman, particularly in Latin American countries where the seizure activity is viewed as a trancelike state in which the person has extraordinary powers.

However, I don't think we should ascribe ulterior motives to the parents or physicians in the case of Lakshmi.  This is not just a matter of appearance.  The following quote is from the article you referenced:
The complications for Lakshmi’s surgery are myriad: The two spines are merged, she has four kidneys, entangled nerves, two stomach cavities and two chest cavities. She cannot stand up or walk.
Not being in class, I don't know how much time you have spent on the issue of cosmetic surgery which has become a major problem as plastic surgical techniques have evolved.  It is distressing how many women buy into the cultural fallacy that an outward youthful appearance is THE gold standard of beauty.
About 25 years ago I was asked to participate in in a Brown University Medical School panel about Disability and Sexuality.  This was because I have an ileostomy, and I was surprised that it was even considered a disability since for me it had been a lifesaver.  However, there was a consensus among the medical interns and residents in the audience that this was considered a greater disability than that of the other panelists who were people with paralyzed limbs, a double mastectomy, cerebral palsy, and total blindness.  I was pleased to challenge their perceptions but amazed at their negative attitudes towards bodily function.
I'm not sure if or how this fits into what you are learning in your class on disability.  I rarely have time to respond, but I do read your thoughts and they are enlightening and energizing.   Thank you.

   Barbara  '57

Ann Dixon's picture

Thanks, Barbara, it looks

Thanks, Barbara, it looks like Anne has taken your comments to another of her classes for their discussion too. That class is a "CSEM" which is an interdisciplinary course for frosh.

 Ann '83

lvasko's picture

After today's class and our

After today's class and our conversations on disability and surgery, I found it ironic yet fitting when my friend showed me the link to a particular article this afternoon. It is an article about a 2 year old girl who is undergoing surgery to remove 4 of her 8 limbs. I will attach the link below.

But this article really got me thinking about our conversation in class today and I was struck by how our conversation about disabilities was completely contained within the western context. Not once did we stop to consider that what western cultures consider a "disability", another culture could consider a blessing. Little two year old Lakshmi is a perfect example. Lakshmi, aptly named after the hindu godess of prosperity, is being worshiped as a godess in her hometown. Yes, she is an oddity, but it is a positive oddity rather than a negative. Similarly, if I am not mistaken, in China being born with a sixth digit (6th finger or toe) is considered a sign of good luck and fortune.
Not all "disabilities" are taken negatively. We need to remember that what one culture consideres a disability, another culture may consider a blessing. We should be aware that our conversations about Feminist Disability Studies may certainly fit into the western context but may not apply to other cultural traditions. 
 
On top of it all, I cannot help but wonder whether the parent's decision to have their child undergo surgery has more to do with their desire for their daughter to live a "normal" life or the desire of enthusiastic doctors eager for experimental and scientifically renowned surgery. Who, if anybody, pushed the decision to 'normalize' Lakshmi?

http://www.msnbc.msn.com/id/21652326/

Flora's picture

film screening

Just thought everyone might want to know about the film screening this weekend on local artists with disabilities.

Flora