disability

For this month’s column, I spoke with Patricia A. Adler, Professor of Sociology at the University of Colorado, Boulder. She and her husband Peter Adler, Professor of Sociology at the University of Denver, co-authored a new book that offers an ethnographic perspective on a controversial health topic. The Tender Cut: Inside the Hidden World of Self-Injury (NYU Press) invites readers to go beyond predominant medical and psychological perspectives by offering a nuanced analysis of self-injury as a sociological phenomenon.

Their book is the culmination of 135 in-depth, life-history interviews conducted over ten years with self-injurers from across the world, as well as analysis of tens of thousands of emails and Internet messages. Their participants were engaging in self-injury, the intentional non-suicidal harm of one’s own body, including but not limited to include cutting, branding, burning, branding, and scratching. 

AN: In your book, you describe a broad range of motivations for self-injury. Can you explain the most typical reasons?

PA: Most of the people we interviewed saw it as a way to cope, to function when they were facing tough times. Many started in their teens when they were trying to cope with negative life circumstances.

AN: Did you find that sex and gender made a difference – did the self-injury types or reasons differ between men and women?

PA: Yes, men and women differed in the ways that they self-injured and their motivations. Men were injuring their bodies because of feelings of rage and anger and were more likely to use dull or rusted instruments to make bigger injuries on parts of their body that would be easily visible. If a man did small self-injuries and tried to hide them, then other guys would be likely to ridicule him. Women were more likely to use sharp, small blades on parts of their body that they could easily conceal because society judges women’s bodies, and they wanted to be able to hide it. They tended to self-injure because of negative feelings about themselves.

AN: It’s fascinating that sex and gender factors into others’ reactions to the self-injurers: that those who acted in ways that matched their gender norms – who were seen as being appropriately masculine or feminine – received less ridicule. Do you think mental health and medical practitioners understand self-injury as a gendered phenomenon?

PA: I think that mental health practitioners probably regard self-injury as they do eating disorders, as a generally female behavior. They may see a guy here and there, but I doubt that any practitioner sees enough to recognize this pattern. And some of the books I’ve read from the clinic people who do see larger numbers have presented cases of men who injure in ‘feminine’ ways. So I don’t think they’re attuned to this gendered pattern.

AN: Most media coverage of self-injury approaches it as a psychological problem, often as a physically dangerous type of addiction. Can you explain the sociological perspective you present on self-injury?

PA: It is common for self-injurers to be told that they have a mental disorder and that it is an addictive practice. We looked at a range of people who self-injure and found that their motivations did not necessarily reflect mental illness. A lot of regular teenagers and adults who were structurally disadvantaged were using it to find relief. Then there are those who have severe mental disorders before they start self-injuring. Some of the people we interviewed were mentally ill, but our research suggests that many of them are not. We intentionally chose the word “tender” in the book’s title because cutting may be a coping mechanism that makes some people feel empowered with a sense of control over their pain. The self-injury gave some people relief from emotional pain that they needed to get through challenging times. Our book is nonjudgmental, providing a “voice” for the experiences of a broad population of self-injurers: comprising people who have genuine mental disorders, as well as those who just have temporary situational life troubles, and everything in between.

AN: From the medical and psychological perspectives, a key focus in on how to help self-injurers stop “dangerous” behaviors. So, what did you learn about the ways and reasons why self-injurers stop?

PA: Many self-injurers stop when they are able to escape from the circumstance that caused them to initially start. So, transitioning from high school to college can be a time when young people stop. For others, it takes getting a good job, finding a partner who will not tolerate it, or becoming a parent and not wanting their children to see them self-injuring.

AN: In other published interviews, you’ve made the somewhat controversial point that not every self-injurer will need to invest in professional medical and mental health treatment in order to quit. What are some of the other ways that those you interviewed found to be helpful when they decided they wanted to stop self-injuring?

PA: Solutions from the medical-psychological community include everything from specialized clinics, which can be very expensive, to outpatient therapy, and drugs. Those who found therapy to be effective were those whose therapists addressed the reasons the person began self-injuring in the first place, rather than those who focused on self-injuring as the problem to be treated. Most of the people who self-injure are not trying to self-destruct; they’re trying to self-soothe. And, we also found many turning to free online support groups to connect with people like themselves who had either stopped self-injuring or could give advice on how to better manage the negative aspects of self-injury. In addition, some people just stopped on their own or with the encouragement and support of friends.

AN: As experts on deviant subcultures, would you say that the Internet has helped to create communities of self-injurers?

PA: Yes, the Internet has helped to build a kind of self-help community for self-injurers. Peer support groups have emerged organically, and people are sharing their experiences with each other in cyber-communities. These online relationships help them manage stress so that they function better in their daily lives.

AN: What role do you think the media played in transforming self-injury into a sociological phenomenon?

PA: It was initially shocking but not necessarily more shocking that the many other ways the people try to relieve their pain. The stories often showed that self-injury was not a suicide attempt and wasn’t necessarily because the person had serious psychological problems. Once the media started to cover self-injury stories of celebrities, then it became more acceptable because young people could relate to these people. Now, it’s so common in high schools that teens are more willing to disclose their self-injuries to their friends, and their friends often see it as “that thing that people do” if they’re unhappy, as a temporary coping mechanism. We see this behavior as highly “socially contagious”—the media, along with word of mouth, has contributed to its spread.

In The Tender Cut, we describe how media coverage of celebrities who self-injured, the accessibility of the Internet, and shifts in cultural norms made it possible for loner deviants to join Internet self-injury subcultures. These subcultures represent a range of levels of acceptance of self-injury and often help people to realize that their behaviors do not necessarily mean that they are mentally ill or bad people. This helps them manage the stigma of society judging people negatively for relieving emotional pain by inflicting physical pain on themselves. Our longitudinal data shows that many who began self-injuring as teenagers eventually outgrow it and lead functional lives.

I wanted to let you know that over at my primary blogging residence, we’ve begun a conversation about Friday’s New York Times article, “A Father’s Search for a Drug for Down Syndrome.” Over the next few days bloggers, activists, and other folks–all parents of children with Down syndrome–will weigh in.  Come have a look and take part!

If you’re someone who reads blogs written by parents of kids with Down syndrome, you’re probably aware of what’s been going on with GQ.  This magazine–which, let’s admit here on a feminist blog, is problematic for lots and lots of reasons–has a current online article called “40 Worst Dressed Cities.”  In this articles, they critique cities like Nashville and Omaha for the ways that men in these cities dress.

What makes this something other than just goofy or a waste of time is how they described the city of Boston:

“‘But Boston is the epicenter of prep style!,’ you say? That’s true, but due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything: Khakis!—with pleats. Boat shoes!—with socks. Knit ties!”

When I read this I thought, “Come on, y’all–are you in seventh grade?  What the hell makes you think this is funny–or even acceptable?”  But I have friends who did more than just think grouchy thoughts:  they spoke out.  For instance, my friend Brad wrote this to the magazine’s editors:

As a parent of a young child with Down syndrome I feel compelled to point out the DOJ statistic that people with DS are 1.5 times as likely to be the victim of a violent crime, and women with DS are 2 times as likely to be the victim of sexual assault.  While stories of people with DS committing a violent crime are few and far between, stories of them as victims of such crimes are quite wide spread.  These crime rates follow our society’s poor perception of this group of people; with poor attitudes come poor treatment.

According to your mission statement: “GQ is the authority on men….providing definitive coverage of men’s style and culture. With …award-winning writers, GQ reaches millions of leading men each month. ….. GQ is simply …smarter.”

I note you have just slandered my daughter and her right to be accepted in society to “millions of men” and told them that even in their “smarter, leading culture” it is okay to marginalize and make fun of people with Down syndrome for a cheap laugh.

To see a comment like this from an anonymous person in the comments of an article is one thing, but for it to be printed in a legitimate national magazine catering to well-educated and affluent people is quite scary to a parent who has to struggle just to ensure his daughter maintains her basic rights.

Lastly, I will point out that my 3 year old daughter has spent 750 hours in various therapies, she has undergone open heart surgery at three months, and she has undergone 5 surgeries and 4 other separate week-long hospitalizations in her short 150 weeks on this earth.  Each time a nurse came at her with a needle, she cries, but she has fought back with a zest for life that is indomitable.  She has worked harder in her first three years of life than most of us do in decades, and she comes back with a smile.  I believe the adversity she has overcome and her attitude is quite admirable.  But apparently, to GQ, she should be thrown under the bus because someone wore socks with boat shoes?!

He then attaches pictures of his beautiful daughter, one picture from her infancy when she was getting prepped for heart surgery, and one from today, of her delighted smile as she swings on the swingset.  Yesterday he got this reply from the editor of GQ and the author of the article:

Dear Brad,
We received your letter and absolutely understand that we have caused you and your loved ones pain. Hurting anyone’s feelings or being disrespectful or cruel was certainly never our intent, but your letter helped us understand how poorly chosen our words were. What we initially posted was insensitive and ill-informed, and we’ve removed the offensive language from the website. We deeply regret our error in judgment. There is no excuse. We are both very sorry.
Sincerely,
Sean Fennessey, editor, GQ.com
John B. Thompson, writer, GQ.com

Other folks got the same letter, and GQ has indeed revised the language on the website.  This is an example of the kinds of change that can happen when we think of ourselves as people with a responsibility to speak out against unacceptable behavior.

I think it’s easy for those of us who are concerned about oppression to start feeling tired and overwhelmed, and to roll our eyes and complain to our loved ones about things like the GQ article, but to stop there.  I did that!  I hadn’t even blogged about it.  Last night I asked Brad if I could share his narrative because I find that success stories like this encourage me to speak out.  I suspect that Sean Fennessy and John B. Thompson might think twice about how they depict people with cognitive disabilities in the future.  This has made a difference.

Meanwhile, Brad is pushing for more:  he wants GQ to give a free page of ad space in their next issue to the National Down Syndrome Society or the R-Word organization.  And when he’s successful, I’ll post about it here!

Guest poster Amber Cantrell is a student at the College of Charleston, majoring in Women’s and Gender Studies.  The research project she discusses is partially funded by a Student Undergraduate Research Fellowship from the College.

Although this might be somewhat disappointing, rather than Alison Piepmeier authoring this blog post, it is in fact her undergraduate research assistant. However, I am writing a lot about her, so perhaps that will be a small consolation prize. My name is Amber Cantrell, and I’m a junior at the College of Charleston eagerly benefiting from working with a feminist scholar like Alison.

This summer Alison and I are working on a project about prenatal testing. Initially, we’d thought prenatal testing was going to be one chapter in Alison’s book project about the intersection of feminist disability studies and parenthood. As we’ve begun to explore all the different topics that Alison and I find interesting about prenatal testing, the information gathering stage seems to have exploded rather than becoming focused and topic specific. As the person who is primarily doing the research that Alison requests, I have delicately pointed out that this chapter on prenatal testing may really a book project on prenatal testing.

Our plan for the summer was to talk with parents of children with disabilities, particularly Down syndrome, because we wanted to hear their stories. How did prenatal testing function as part of their pregnancy, if at all? How did these prospective parents make their decisions about prenatal screening, diagnostic testing, and potentially terminating their pregnancy?  In particular, what sorts of narratives—stories from their doctors and families, stories from pop culture—shaped their decision making processes?  These questions are intensely personal and potentially upsetting to those who might have chosen to terminate a fetus that they had anticipated with excitement until they found out about a particular disability. Alison and I hoped we could secure 12 interviews, but we thought this might be ambitious; we thought that perhaps only a few people would consent to talk about their stories.

When Alison contacted some of her own friends and acquaintances as well as posted our interview request on her blog, we received 9 responses in the first 24 hours. Within the next 12 hours, we had our total of 12 people who had contacted us with their desire to participate in this project.  And people keep responding.  People who Alison has never even met have agreed to be interviewed—people from around the country, some who are living happily with large families, some who are dealing with the death of a child with disabilities, some who are pregnant again and considering testing from a new perspective.

Their generous willingness to talk about their experiences is something that Alison and I are finding overwhelming (in a good way).  Why do so many people want to be a part of this project?  We think this is evidence that we haven’t developed a cultural space for women and their partners to talk about prenatal testing, which many have come to consider an inherent part of pregnancy. As a society, we need a space to grapple with the implications of choice and what it means, especially when statistics show that upwards of 85% of pregnancies with Down syndrome are terminated.  Alison and I are both pro-choice feminist scholars, but we recognize that although the word “choice” implies something easy—a quick decision—in the case of prenatal testing and disabilities, the process is anything but easy or quick.

We’re eager to hear these stories, to start collecting and examining the complexities and paradoxes that these parents are sharing.

A blog-friend (i.e. someone I know only because we read each other’s blogs) posted this last night, and I had a look. It’s a post about the fact that PBS News Hour has started a six-part series called “Autism Now,” and the series was at least partly inspired by the fact that host Robert MacNeils’s grandson Nick has autism.

After watching the first part of the series, I shared this with blogger Melissa:

Okay, so here’s a quick comment based on having watched only a tiny bit of the PBS clip. It troubles me a bit how autism is framed here as (mostly? entirely?) a medical condition–worse, as a medical problem. It strikes me as troubling, like Nicholas is now defined not as a person but as a used-to-be-person-now-tragedy.

The clip starts by explaining that they’re going to explore “how Nick was transformed from that healthy boy to Nick today.” Nick’s mom, Alison MacNeil, describes seeing a very young Nick exhibiting behavior that is often affiliated with autism. “I had this sinking feeling in my stomach,” she explains, “because I knew something was wrong.” At one point MacNeil interviews his granddaughter, Nick’s ten-year-old sister, and she shares with him, “I hope that [Nick] gets healed soon.”

MacNeil notes his own painful feelings at the challenges he has in connecting with Nick. He frames his relationship with Nick as strange, so different than his relationship with his children and other grandchildren. These are valid feelings for MacNeil himself to be grappling with, but the show seems to suggest that the pain results from Nick’s “abnormality,” not from MacNeil’s need to reframe his expectations for his grandson. Further, he describes his admiration for his daughter and son-in-law’s “patience and courage,” and he seems impressed that his son-in-law comes home from work every day and spends 90 minutes riding the bus with Nick. The show, then, seems to be characterizing autism in two ways: as an illness that must be understood by medicine and healed, and as a tragedy, a tragedy that makes the parents heroic. Nick isn’t okay as he is today. He’s not normal. He needs to be fixed. Thank goodness that Alison and Dave are so patient and courageous.

As I wrote to Melissa, I find this troubling. I don’t have a child with autism, so I can’t speak to that experience on a personal level, but this show strikes me as participating in the sort of dehumanizing rhetoric I often see in public discourses around children with cognitive disabilities.

As good timing would have it, I watched the first part of the series last night, after I got home from a graduate class in which we’d been talking about autism. We were discussing public representations of autism and the cultural work various representations are doing. We had a look at Ari Ne’eman, the first openly autistic Presidential appointee ever. In an interview with Wired magazine, he advocates neurodiversity, a framing of autism and other cognitive disabilities not as deficiencies, defects, or tragedies, but as different ways of being. He explains,

There’s a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don’t know anyone who thinks that way. Most of us have had deeply personal experiences of social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it’s much more productive for us to focus on how we can improve people’s lives than to keep presenting people as pitiable burdens.

No more pity. It doesn’t help anybody.

Ne’eman has received a surprising number of hostile responses to his appointment to the National Council on Disability, responses that seem in part to be based on his perspective on autism. As one of the people in class last night observed, “Changing our culture to accommodate people with autism is much more immediate and pragmatic than all these efforts to find a cure for autism. Maybe that’s why it’s threatening: it’s saying that the mainstream culture has to change, rather than saying that people with autism have to be different, or disappear.”

I don’t mean this post in any way as an individualized critique of the MacNeil family. The family clearly loves Nick and advocates accommodations and support for him—and for them—and this show is certainly meant to raise awareness about autism. But the show itself strikes me as an example of how easily (even unintentionally) autism and other cognitive disabilities can be framed as tragedies to be mourned, and/or conditions that are unacceptable and need to be fixed. I’d rather see more public emphasis on neurodiversity, on changing our society so that we can accommodate and support as many different types of people as possible.

The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me, and me to the world.

–Harriet McBryde Johnson, Too Late to Die Young

I’m gonna sit at the welcome table,
I’m gonna sit at the welcome table one of these days,
Halleluia!
I’m gonna sit at the welcome table,
Sit at the welcome table, one of these days.

–Traditional spiritual

“The Welcome Table” is a song that my daughter has been able to sign along with for months now. As many readers already know, Maybelle has Down syndrome. She was born in 2008, into a cultural moment that was ready for her in ways it would not have been even a few decades earlier. In one of my classes recently, a student shared that forty years ago, her sister was born and her mother was told to institutionalize her. A few decades later, shortly after Maybelle was born, I was told, “The College of Charleston is starting a college program for people with intellectual disabilities!” It’s a very different world.

And yet it’s still a world in which many people have a hard time seeing my daughter as fully human, and a world in which many people believe they ought to have prenatal testing so they can be sure their pregnancies won’t result in the births of people like Maybelle. As Harriet McBryde Johnson notes, it’s “a world that by and large things it would be better if people like me [and Maybelle] did not exist.” I know that the stigma surrounding—and, indeed, creating the meaning of—disability persists. I’m aware of it now in a way I wasn’t before Maybelle entered my life. Watching her sign this song recently, I felt how much I want Maybelle to be part of a community where, as one young feminist scholar puts it, “We [can] bring our whole selves to the table.” I want her to sit at a table where she’s welcomed, recognized as a valid and valuable person, and fully included.

I’ve just finished teaching Johnson’s memoir, Too Late to Die Young. Every time I read this book new parts jump out at me, and as I prepared for class last week, the passage quoted above got caught in my head and hasn’t left. Johnson explains that her “fight has been for accommodation.” She makes this point as she recounts an extended dialogue with Peter Singer, a philosopher who argued—kindly, but distressingly and persistently—that people with disabilities, people like Johnson, live lives that are “worse off” and therefore they should be eliminated before (or shortly after) birth, or allowed to commit suicide later. When many of Johnson’s activist cohort criticize her for talking with Singer, she notes that he’s not any more a monster than most of the people she encounters in her life.

One of the moments of real controversy to disability activists is when Johnson sits down beside Singer for a meal. This is during her visit to Princeton, and they dine with students who ask Johnson questions about, essentially, why she deserves to exist. At one point Johnson’s elbow slips, and she’s unable to feed herself. She needs an adjustment. She writes, “Normally I get whoever is on my right hand to do this sort of thing. Why not now? I gesture to Singer. He leans over and I whisper. ‘Grasp this wrist and pull forward one inch, without lifting.’ He looks a little surprised but follows my instructions to the letter.” Some disability rights activists saw this as a flawed endorsement of the humanity of a genocide advocate. Johnson, though, recounts this moment in her book with a kind of wry tenderness.

Interestingly, Singer himself reminisces about their meal, and about his assistance to Johnson, with a similar tenderness in the eulogy he wrote about her for the New York Times. He writes that Johnson’s description of their meal “suggests that she saw me not simply as ‘the enemy’ but as a person with whom it was possible to have some forms of human interaction.” And he identifies her as a person whose “life was evidently a good one.” What happened at their meal was that Johnson brought her whole self to the table, and by doing so, she endorsed Singer’s full humanity, as well. Having a meal together, sitting side by side at the same table, made that possible.

Early in my career at the College of Charleston, Johnson sent me an email, alerting me to the fact that the Women’s and Gender Studies Program I was directing was hosting an event at a venue that was inaccessible to people using wheelchairs. I was a good enough feminist that I recognized the need for a basic level of accommodation, so I made the change. It was a first step for me, a moment when I committed to spaces that were accessible: we’ll have plenty of tables for everybody!

Now, six years later, I’m moving beyond that initial understanding of accommodation. I want accommodation to mean that we are reimagining our communities in significant ways, that we are conceiving of our world as made better—richer—more wonderful by the inclusion of all kinds of diversity, including the diversity of physical and intellectual disabilities. I want us to bring our whole selves to the table, one table that everyone has the chance to sit at, a table where we’re all truly welcome.

Tomorrow I meet for the second time with the undergraduate class I’m teaching this semester.  The class is called Disability, Power, and Privilege, and it’s about feminist disability studies.

During our first meeting we talked a bit about the rhetoric we use where disability is concerned.  I expect—and I’ve told them so—that we’ll all say things over the course of the semester that others in the class may find troubling or offensive, so it’s everybody’s job to assume that we’re all doing our best, and to call us out when we do wrong.

While this attention to rhetoric—people first language, for instance—is old news in disability studies and disability activism—indeed, in any of the civil rights movements of the 20^th century—it’s important for my students.  And not just my students:  over the last several months I’ve been reading memoirs written by parents of children with disabilities, and one of the things that’s surprised me has been the frequency with which the term “retarded” appears in these memoirs, even in memoirs as recently published as 2009.

It’s a term that a number of disability rights organizations have targeted.  The Associated Press stopped using the term in 2008, and in 2010 legislation was approved that removed the term from all federal documents, replacing it with “intellectual disability.”  And yet it keeps being used, not only in memoirs written by authors who ought to know better, but by professionals I interact with on a daily basis.  The most recent occurrence was last week, and the person who referred to a question as “retarded” was someone who deals with diversity on a regular basis.

In his book Life As We Know It (1996), Michael Bérubé offers a clear and compelling refutation of this word and its cultural meaning.  Because of the word’s familiarity, and the ease with which it continues to permeate conversations in 2011, I’ll offer you—as I’m offering my class tomorrow—an excerpt from Bérubé:

But you know, there really is a difference between calling someone a “mongoloid idiot” and calling him or her “a person with Down syndrome.”  There’s even a difference between calling people “retarded” and calling them “delayed.”  These words may appear to mean the same damn thing when you look them up in Webster’s, but I remember full well from my days as an American male adolescent that I never taunted my peers by calling them “delayed.”  Even for those of us who were shocked at the frequency with which “homo” and “nigger” were thrown around at our fancy Catholic high school, “retard” aroused no comment, no protest.  In other words, a retarded person is just a retard.  But delayed persons will get where they’re going eventually, if you’ll only have some patience with them. (26)

Body Language proudly presents July’s guest writer, Laura Maffei. She is the author of the poetry collection Drops from Her Umbrella (Inkling Press 2006) and founder of the journal American Tanka. Her current project is a memoir called Girl with a Secret, or How I Tried to Hide Muscular Dystrophy with Tight Jeans and Makeup and she blogs about issues of appearance at lauramaffei.com.

When I was twelve years old, in 1980, I was diagnosed with muscular dystrophy. There weren’t really any visible symptoms yet, but the disease was progressive and eventually there would be. During the car ride home, my mother turned to me in the back seat and said, pointedly, “We’ll only be telling Aunt Nancy and Uncle Joe.” These were our closest relatives. What she meant was, we would not be telling anyone else. She was telling me to keep it a secret.

My parents made this decision mostly out of protection. This was, after all, long before the Americans with Disabilities Act, and they didn’t want me unnecessarily labeled at school. But there was another side to it. My family cared deeply about appearances, my mother in particular. None of us, my father included, were allowed out of the house for any reason without being freshly washed and combed, wearing freshly ironed and color-coordinated outfits. We were also expected to look dignified and graceful at all times.

There was one other layer. I was a girl. I think a boy would have been told to keep it a secret too, for general appearances’ sake and to avoid discrimination, but a boy, you see, could win his mate with his earning power, if he worked diligently enough. Which he would be expected to do (both work hard and find a mate), since we were a traditional and conservative Italian-American family with one foot still in the 1950s. When I was born in 1967, aunts, uncles, and grandparents all placed bets on what age I would be when I got married. The bets ranged between 19 and 24, with one uncle betting “never” because I’d be a career woman. One could not be both, because then how could you cook or clean for your husband and children? And yet one was definitely expected to marry.

And marrying required being attractive. While I was encouraged to study hard and go to college, it was always made clear to me that being attractive was essential, and that “attractive” meant very specific things: A slim figure with a flat stomach. A face covered in foundation, blush, eye shadow, and mascara. (From the age of 13 I was encouraged to wear makeup every day.) Certainly not a disease that would cause my lower stomach to protrude from weakened abdominal muscles and cause me to walk with a labored gait that made people glance at me when I went by.

I had to hide it as best I could, and for a while I found various ways, like super-control-top hosiery and lying to the gym teacher about how many sit-ups I did. I refused to answer questions about it, especially from men I dated. Because yes, insanely, I kept trying to hide having muscular dystrophy well into adulthood, long after it became ludicrous to try to hide the obvious fact that I had a disability, that my body wasn’t the perfect one I thought I had to have in order to be acceptable.

Which is why, even though my story is specific and a little bizarre, I see it everywhere. It’s the same old story, really: girls and women trying to conform to what the culture tells them is physically acceptable, and feeling shame if they don’t. I see it when a friend won’t take her cover-up off at the beach in 95 degrees. I see it when the students I teach totter across the stage during an awards ceremony in stilettos that are hurting them (and, in one case, fall down the stairs). I see it when a woman in a mirror in a public bathroom experimentally pulls her skin back tight from her face.

What is the solution? For me, two things helped somewhat: learning how to draw, and hanging out with a group of smart, funny, earth-worshipping Wiccans while I was in my twenties. The Wiccans showed me that everyone, EVERYONE, was perfectly acceptable whatever their face or body type. Drawing, with its requirement of intently caressing with the eyes every shape and shadow of a person’s face and figure, showed me that everyone is beautiful.

Not that I don’t still cringe at times, when I see myself unexpectedly reflected in a store window and I don’t conform to the image I was brought up to believe was the only one that was acceptable. We all have to keep finding our way, slowly, out of the morass of arbitrary decrees that tell us what we’re supposed to look like, and what we’re supposed to hide.

I’m always highly attuned to language—its nuances, implications, and effects—so much so that my partner is ready (if not always eager) on at least a weekly basis to hear the latest term or phrase that I find problematic.  So here’s the latest:  I’m troubled by the metaphors of battles, wars, fighting that often get linked to people with diseases or disabilities.

Two nights ago I was watching Extreme Home Makeover.  As a side note, let me warn you never to watch this show unless you just want to sit in front of your tv weeping while simultaneously being vaguely embarrassed at yourself for doing exactly what the show’s makers want you to do.  That pretty much describes my evening.

There are many, many problems with this show that other bloggers should feel free to launch into, but one of the things that struck me was the battle metaphors.  The father of the family whose home was being remodeled has ALS, a progressive neurodegenrative disease.  He seems like a genuinely wonderful person, with a great attitude and a passion for his family and his career.  Everyone who helped with the project of rebuilding this family’s house seemed moved by this guy, and repeatedly throughout the episode folks recognized him and honored him for, among other things, his “battle against ALS.”

This is, of course, a pervasive way of framing people with diseases of all kinds.  The ALS Association’s big statement at the top of every page on their website is “Fighting on Every Front to Improve Living with ALS.”   There are a number of websites devoted to fighting cancer, fighting HIV, cystic fibrosis, multiple sclerosis, etc.  The fight metaphor is often how individuals with these diseases discuss their own lives and priorities.  And yet, it gives me a small, uncomfortable twinge.

I’d be politically troubled or offended if someone had referred to the little boy in the Extreme Home Makeover family as “battling” his life in a wheelchair, or if people suggested that my daughter was “struggling against” Down syndrome.  Down syndrome and paralysis aren’t war zones, they’re simply parts of the lives of some people.  And yet diseases seem to be different, certainly to many who are living with them.  While Down syndrome has been part of Maybelle’s life since the instant she was conceived, ALS comes along later in life, and the fighting metaphor seems empowering and functional for many people.

But I’m not one of those people.  I think that much of why this bothers me is personal.  It’s not that I’m opposed to fighting.  I’m an activist:  I welcome a fight.  I’m happy to aggressively challenge many things in this world that need to be shaken up.  And yet, as a person with a brain tumor, I don’t want my health condition framed in terms of a battle.  I am not someone who’s “battling” a brain tumor.  Some scholars have examined this concept and have identified several ways that the metaphor is problematic—not only because it’s “inherently masculine, power-based, paternalistic, and violent” but because it frames the patient as the one who has to fight fight fight in order to win the war, and if they don’t win, then they didn’t fight hard enough.

I have a brain tumor, and there are things I need to do to take care of myself, but no level of armored-up embattlement is going to make it go away.  I don’t love it, but it’s part of my body.  As the scholars note, “There are conceptual weaknesses in the metaphor. There are no actual enemy invaders; the enemy is self…and the battlefield is the patient’s very body.”  I feel that I’d like a rhetorical framing of my condition that allows me a little more coherence and peace.

Fortunately, I’m very happy with my house, so there will be no need for the Extreme Home Makeover folks to come over here and cheer for my fighting spirit in order to make themselves feel better.

Editor’s note:  I promise that my next Girl w/Pen post will be about something other than my brain tumor!  You all have been very supportive, but I think it’s time for some variety.

Over the holidays I had several seizures, which led to me being diagnosed with a brain tumor. It’s a low-grade glioma, which is the good news. It’s smack-dab in the middle of the language center of my brain, which is the bad news.

I tell you this in part to let you know why I might not be around for the next few months. I’ll be having brain surgery in February, and I expect at least six weeks of recovery, time in which I’ll be exhausted and may not be up for blogging. I hope to bring in some fabulous guest bloggers for those weeks.

The other reason I’m sharing this, though, is because having a brain tumor in the language center of my brain has raised a lot of hard questions for me, questions that relate to the theme of this column. I’m an academic, a scholar who writes books and teaches classes. I’m the mother of a young child who is doing great but who needs more help, intervention, and encouragement than a typical child. My Ph.D. is in English. I have been a ravenous reader and passionate writer since I was a little, little kid. Potential damage to the language center of my brain feels like something that threatens the heart of who I am. Who will I be if I don’t have the fluency or facility with language that I have right now? I’ve been poking around in the academic world of disability studies for the last several months, but this diagnosis brings disability even more intimately into my life. It’s not only someone I love who’s experiencing life with a disability (my daughter); it may well be me.

Indeed, no matter what the long-term effects are (and the prognosis actually looks quite good), I certainly will be living with disabilities for the weeks and months immediately following the surgery, as I’ll have brain swelling that will lead to some language difficulties and motor function challenges. I’ll have a kind of insider’s perspective on disability.

Who will I be? It’s an academic question as well as a deeply personal one. I can go around and around in my mind, wondering–imagining what it would be like not to be able to talk off the cuff about feminism with the same ease that I do now, or to hear a sentence and not to be able to understand it immediately.  These aren’t effects that the neurosurgeons have promised; in fact, one of the frustrations has been that they can’t tell me much.  We’re very much in a wait and see mode.  One friend pointed out that this may be a great opportunity for me to learn that who I am is not the same as what I do, but she was quick to add that this life lesson is no justification for a brain tumor.

It’s really weird for me to think about so many characteristics of my life—characteristics which in some way feel transcendent or inherent—as being tied to a physical organ. It gives body language a whole different meaning.