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.

I want to let you all know that my “Welcome Table” post from Girl w/Pen has now been syndicated on BlogHer.  As of today, it’s first in line on their feminism line-up, but here’s the individual link, too.

I got this cool graphic and everything!  BlogHer contacted me to ask about syndicating it–who knows how they came upon it, but I thought that was very cool.  As you may remember, the post generated loads of thoughtful commentary here, and I’m interested in seeing if readers over in the BlogHer community have things to say about it.

[Cross-posted at Baxter Sez.]

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)

On my other blog, I recently posted a review of the book Origins:  How the Nine Months Before Birth Shape the Rest of Our Lives (Annie Murphy Paul, 2010). I wasn’t particularly fond of the book.  It offers an overview of research being done in the last few decades to determine fetal origins, or the ways in which people are affected—perhaps for generations—by what happens during the time that they are gestating.  Despite the author’s good intentions, I found it to be a troubling book.  As I recounted in my review, even as a woman who isn’t pregnant, I felt uncomfortable reading, like I was being indicted for not being careful enough while I was pregnant, back in the day.  While Paul acknowledges the danger of this research being used to bolster already culturally prevalent “mother blame,” she frames her work in the hope that it can provoke broader cultural change and positive evaluation of mothering, from the point of conception onward.  I said I didn’t think it worked, and that I did, in fact, feel blamed.

What I wanted to talk about here is not my review but the comments it received.  I’ve had a number of responses, and the thing that’s interesting is that many have been lengthy.  Folks haven’t just been weighing in—”I disagree!”—but offering counterarguments or lengthy explanations of how fetal origins research is or isn’t valid.  Some have been arguments based in personal experience, others have been based in professional expertise (medical anthropology, for instance, or anesthesiology).

So my question is, why did this matter enough to readers that, in responding, they essentially wrote blog posts of their own?

I think the answer is that parenthood is a high stakes endeavor, particularly for the middle-class (overwrought?) parents cohort I belong to.  More specifically, motherhood is a high stakes endeavor—and I say this with all respect to my partner, who is an outstanding father to our daughter, but who doesn’t face the pressure that mothers routinely face.

All of us who are in the realm of motherhood—either as parents or as scholars of motherhood—know this.  The internet is full of jokes about “mompetitors” that friends regularly send me.  This piece from Salon maps out the topics you simply can’t discuss, and it’s not wrong:  breastfeeding, attachment parenting, the family bed, and crying babies are topics I’ve found to be so highly-charged that I’m incredibly careful about talking about them, even with very close friends.

The reason I read Origins is that I’m currently doing research into prenatal testing, and that’s another subject that’s so high stakes that many of us simply don’t talk about it at all.  When some of my friends have been pregnant, they haven’t shared the news until after they’ve had the amniocentesis that determined that this is a pregnancy they’re actually going to continue.  I’d hoped that Paul would discuss this aspect of our cultural assessment of the fetus, but she didn’t.  She did, however, share that many of the studies base their assessment of prenatal health on postnatal IQ scores, a fact that I found very troubling.

We’re raising kids in a culture that’s perfectionistic and that seems to believe, by and large, that we—as mothers—are always wrong.  If something “bad” happens involving our child (such as short attention spans, low IQ scores, or asthma), it’s our fault.  Since we’re already pummeled with this viewpoint, scientific research that says, “And it’s true while the baby’s in utero, too!” isn’t necessarily helping matters.  This isn’t to say that the scientific research is or isn’t valid.  I’m not a scientist, and my skepticism about some of the studies Paul reports on isn’t definitive.  What I’m saying is that this science is emerging from and feeding into a culture that has some very troubling, individualizing, and sexist views.  I think my readers are attuned to that culture, as well, and it makes all of us a bit defensive.

This month’s guest column is by Dr. Sheila Moeschen, an academic, writer, and Public Communications Consultant. For more of her writing, visit: www.citizendame.com. She currently resides in Boston.

The first time I saw the Gap ad for the skinny black pant starring the iconic Audrey Hepburn I was on a treadmill at the gym. The irony of the moment was not lost on my not-so-skinny thighs and me as we plodded along the motorized sidewalk to nowhere.   Released in the fall of 2006, the ad uses footage from her 1957 film Funny Face and shows Hepburn, decked out in a black turtleneck and black, form fitting chinos, rehearsing a modern dance number.  As the badass riffs of AC/DC’s “Back in Black” play, Hepburn kicks, minces, and twirls lithely across the screen.  For Gap, it marked the re-launch of their skinny pants, for the rest of us it announced a new era of fashion: skinny fashion.  The pants flattering Hepburn’s adorable, minx-like figure represented an unreachable brass ring to those of us carrying curves and the baggage of sugar binges gone by.  The notion of catering to a (excuse the pun) narrow population of individuals seemed additionally ludicrous. What woman in her right mind, I wondered, would subject herself to the same kind of physical, fashion bondage suffered by her corseted or foot-bound ancestors? Who would deliberately participate in the tyranny of skinny fashion?

The answer: a lot of women. Four years later the skinny fashion trend remains firmly entrenched in the racks of couture boutiques and mainstream outlets alike.  Gap’s skinny pant gave way to skinny jeans, which birthed skinny lyrca denim, known as “jeggings,” which helped to bring back stretchy, cotton leggings, the kind sported by late-80s teen sensations Debbie Gibson and Tiffany.  Though designers have created skinny clothing lines for men and women, it is women’s figures that manufacturers have in their crosshairs.  Correction, make that women’s and babies’ figures, as Gap recently released a line of skinny denim for its Baby Gap stores. It seems clear that skinny fashion constitutes another way manufacturers participate in colonizing women’s bodies.  By transforming a wardrobe staple—denim—to an unrealistic and even sadistic silhouette, designers systematically shift consumer perspective to the skinny line as both desirable and normal.

What is less clear is the way this fashion trend shapes ideas about more than just standards of idealized female physicality.  Feminist theatre historian Elizabeth Wilson writes about the ways in which fashion takes on political and ideological significance.  “Fashion,” Wilson states, “links the biological body to the social being, and public to private. This makes it uneasy territory, since it forces us to recognize that the human body is more than a biological entity. It is an organism in culture, a cultural artifact even, and its own boundaries are unclear.”

The popularity of skinny fashion belies another story about the current enculturation of the female body.  It is a narrative that speaks to women’s continued restriction and constraints during a historical period where women have made abundant economic, political, and social gains. Skinny fashion highlights the intersection of the biological and the cultural bodies as Wilson points out, ultimately presenting a depiction of women in crisis: they are asked to support a culture of thinness and health; they are sexually empowered but also subjects of sexual double standards; they wield tremendous power and influence on the world stage and yet must answer to charges about being “too feminine” or “not feminine enough.”  It is no wonder that women take some form of misplaced comfort in fashion that leaves nothing to the imagination, that puts the body in a clear delineation of terms: attractive or not attractive, fit or unfit, Hepburn-esque or everyone else.

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.

At the end of December I learned I had a brain tumor. In February I had surgery to remove as much of the tumor as possible. In the time between those two events, and since, I’ve had an intellectual and emotional path to travel.

As I wrote about on Girl With Pen, one of the initial traumas of learning about the tumor was learning that it was located in the language center of my brain. The neurosurgeon was fairly certain that removing part of the tumor would affect my language skills. Numbers were tossed around: I could lose 10% of my language functions, or 20. I found myself agonizing over what those numbers meant, trying to connect them in some meaningful, concrete way to my own life. Could I write an academic article with 10% less language ability? Could I read the research written by my friends if I were 20% deficient? Would I be able to respond effectively to my students’ questions and comments in the classroom? One subtle undercurrent to this questioning was, Is it the right thing to do to have this surgery?

And then at some point in January, a plank I’d been standing on–let’s call it denial–dissolved beneath me, and I realized that the questions I’d been asking were important, but they were distracting me from the most important implication of this brain tumor: it’s fatal. If I didn’t have the surgery, I would die, and my daughter wouldn’t have a mother.

This realization quickly became all-encompassing. Maybelle is twenty months old–a baby, someone who still needs active parenting all day, every day. I started thinking ahead to other parts of her life: her first sentences, her discovery of what activities she loves, her best friends, her dating life. I want to be there. I can’t imagine not being there. But more importantly, she needs me there. The ambiguity disappeared. It became very clear to me that having the surgery was the right thing to do.

As I moved forward through this whole process, the intimate exposure to my own mortality made a number of things about parenthood clear to me. Before the diagnosis I might not have known this about myself, but I can’t tell you how grateful–powerfully, viscerally grateful–I was and am that I have the tumor and Maybelle doesn’t. Even pre-surgery, when all the fear was hanging over me, this realization was enough to add some buoyancy to my day.

I also discovered that I identify parenthood as a role–a commitment, a passion, a series of actions–and not as a biological category. It doesn’t matter that Maybelle is genetically related to Biffle and me; she’s our daughter because every day we are her parents. This was comforting, because I know that she is loved by many, many people, some of whom love her enough that they would step in to become her parents if she needed them to. It was a realization that also helped me to dedicate myself even more fully to my choice to be her parent. In the early post-surgery days, I could often only stay awake for a few hours, but I wanted those hours to be spent on the floor with Maybelle.

And yet recognizing my own mortality didn’t make my love for language disappear. In those early post-surgery days, if I had any awake time after Maybelle was asleep, I wanted to read and write, and I did: two days after the surgery I read my own blog, and two days after that I wrote a post. As it turns out, my language skills have emerged from the surgery almost just like they were before, and this is a great surprise and an unending source of joy for me.

So I’m not arguing that parenthood is the only thing that matters in my life. As I’ve told Maybelle many times before, and as I even told my neurosurgeon, I’m a much better mother when I’m working. I’m a better mother when I get to delve deeply into other life commitments and choices in addition to parenthood, and for me these are intimately connected to language. (The neurosurgeon responded, “My wife says the same thing.”)

I don’t have a neat summation here, an explanation of what I’ve learned and what this all means. My life has many points of connection to the planet, but whether I knew it or not, a few of them are more important than the rest.