disability

Heather Hewett’s December 5th blog post on Girl w/Pen, “What’s a Good Mother?” hit a nerve. My daughter Amy was born in 1970, the same year Shulamith Firestone’s The Dialectic of Sex and Robin Morgan’s anthology, Sisterhood is Powerful were published.  Betty Friedan’s Feminine Mystique had already become part of my daily conversation. I read Firestone, Morgan, Germaine Greer, Our Bodies, Ourselves—everything I could find on ‘women’s liberation’.  It all made so much sense.  My husband and I agreed; we would share parenting. Our family wouldn’t follow the usual gender patterns, we’d be equal partners and we’d steer our daughter clear of sex stereotyped toys, clothes, and expectations.  A huge cultural shift was underway; we’d be part of it.

We have been; but not in the ways I anticipated forty years ago.  Children complicate lives in unexpected ways. Amy was born with a variety of disabilities, some immediately evident, others less so. She tested our facile feminism; we chose different answers. I am a single parent.

Parenting a child with physical and developmental challenges is a politicizing activity. Mothering such a child alone is a radicalizing one. Mothering a child with disabilities requires not only the culturally sanctified female roles of caregiving and ‘traditional good mothering’, but aggressive independent action. You must lobby the legislature, pressure the school board, argue with the doctor and defy the teacher. And, oddly, while these ‘unfeminine’ behaviors might, in other contexts, be deemed deviant or too aggressive, performed in the context of mothering a child with special needs they are considered appropriate, even laudable.

But for a single mother, even this culturally permissible deviance is insufficient. My life with Amy is different from the lives of most of my colleagues and friends. I could not provide emotional, physical and financial support for Amy without re-envisioning motherhood. Amy and I  have lived with a shifting assortment of male and female students, single women as well as married women with children. Work for me is not possible without round the clock care for Amy. This is true for all mothers and children, but it is a need that is normally outgrown. Not so in our case. Amy fuels my passion for feminist solutions; not simply for childcare, but for policy issues across the board. I know first hand too many of the dilemmas confronting women, from the mostly invisible, predominately female workers who care for others in exchange for poverty level wages to successful business women struggling to be perfect mothers, perfect wives and powerfully perfect CEOs.

While there may be no individual solutions, there are individual decisions. As a mother and a feminist, I long ago made the decision to work toward a society in which power and responsibility as well as independence and dependence are equally available to women and men.

But it’s a lovely winter day, snow is sparkling on the pine trees, and across the street children are sledding. To talk of the challenges of motherhood without sharing the lessons in joy Amy offers is only a part of the story.

My particular good fortune is in Amy’s special way of seeing the world. Oliver Sacks in The Man Who Mistook His Wife for a Hat writes about people he calls ‘simple’. “If we are to use single word here, it would have to be ‘concreteness’ — their world is vivid, intense, detailed, yet simple, precisely because it is concrete, nether complicated, diluted nor unified by abstraction.”  Amy never misses a sunset, a baby or a bird. She notices and she insists that others notice.

“Mother, come here! Now!”

“Amy, I’m busy, I’ll be there in a minute, OK?”

“No, not OK, red bird will fly away, come NOW!”

I hurry to see red bird.  What kind of silly person would think it reasonable to miss a cardinal in the snow?

This is only one of many joys my daughter has taught me.

It’s the Christmas season, a time of hope. Lately life has begun to look bleaker each day as we  move further  toward a nation of haves and have nots; but today I choose to believe in hope. Someday, not so far away, women and men working together will beat the odds. We will succeed in creating a more just and equal world.

 

 

 

 

 

 

 

Thanksgiving is a week away.  The holiday is uniquely American, grounded in our history rather than our various religions, in a sense of family and community rather than military victories. Increasingly, commercial aspects have intruded on family priorities, but it remains a time when we gather to give thanks for what we have, and hopefully, to recognize and support those less fortunate. I wish it could also be a time for many of us to do more than feel good about spending a few hours serving turkey dinners at a shelter for battered women or homeless families. I wish it could be a time to consider the steps needed to eliminate the poverty, violence and hopelessness that create the need for such places.

But as the holiday approaches our nation confronts the largest levels of income inequality in close to a century. A college education remains a key to economic success but is less affordable every year. These realities are coupled with unrelenting, well-funded efforts that disproportionately effect the poorest among us: women and children; the elderly; those with disabilities.

Attacks against health care reform and the supplemental nutrition assistance program (SNAP), fierce opposition to an increase in the minimum wage, measures to cut off access to safe abortion, are all in the news and on the political playing field. And for some it appears that is exactly what these critical issues are—political play things. Play it right; insure your privileged position.  The idea that actual individuals—mothers, grandparents, children, war veterans, caregivers—will suffer and that those most affected are powerless to change the dynamics of the political game seem lost in allegiance to one’s group or one’s ambition, or both.

Political differences are important ingredients in any democracy, but robust measures of compassion and compromise are required as well.  Empathy for those living in less fortunate circumstances appears missing from the calculations of some of the most powerful players–those inside as well as outside political office.

How can this be?

Two recent studies offer clues. Research conducted at the University of California, Berkeley revealed that the economically advantaged are less likely to express compassion for others than are people with lower incomes. Jennifer Stellar, the lead author of the study said, “It’s not that the upper classes are cold hearted. They may just not be as adept at recognizing the cues and signals of the suffering because they haven’t had to deal with as many obstacles in their lives.”

A second study by Canadian researchers found that a sense of power can influence how people respond to others by changing the way the brain functions. Feeling powerful tends to diminish brain signals that foster empathy.

Yet obviously many powerful, affluent people are deeply compassionate and emphatic. These research studies are not about inevitable outcomes, they simply point to danger signals.

We live in a country where economic disparities foster experiences that enhance a sense of power among the affluent. These same economic divisions result in communities segregated by income, communities where few personal encounters of any depth take place across socio-economic lines. Understanding the circumstances of others becomes more difficult for everyone.

My wish this Thanksgiving is for time to consider the dangers extreme income inequality, an absence of empathy and failures of compassion pose for our country.  Feminists have long pointed out that there are no individual solutions to society-wide problems. Every one of us, politicians included, must find ways to work together if democracy is to flourish.

 

My daughter Amy turned 43 last week and on Saturday we’ll have a big party for her. Amy is party girl through and through and I always look forward to her birthday with delight. But yesterday my happy anticipation was dampened by a casual comment from a friend, “I know you must be tired of having little kid birthday parties after all these years.”

What?

Yes, I’ve given and/or helped plan lots of parties for Amy, parties that still involve aspects often associated with younger children. Amy has intellectual and physical disabilities; she requires more care than my friends’ daughters and sons.  Sometimes I’m exhausted by extensive mothering duties I’ll never out grow.  But tired of parties for Amy? Never!

Harilyn Rousso’s new book, Don’t Call Me Inspirational: A Disabled Feminist Talks Back, caught my attention the instant I glanced at the title.   The anecdote above is part of the reason.  Rousso, whose complicated birth resulted in cerebral palsy and noticeable physical impairments–slurred speech, facial grimaces, an uneven gait–addresses head on the ways many well meaning people assume that anyone with a disability is to be avoided, ignored, pitied–or admired simply for living with her disability. She writes, “I know, I know, if you were me, you’d never leave your house and maybe even kill yourself. So, I am inspirational because I haven’t committed suicide…”

Parents of children with disabilities often elicit some of these same reactions, especially if they are single parents.  I have cared for Amy pretty much on my own since she was a young child. I have plenty of experience with the ins and outs of caring and advocating for first, children, and then gradually disabled people of all ages.  I know many of the realities; I know the heartaches. But I also know the joys.

Rousso gives us an intimate glimpse of how far we’ve come and how far we have to go–as a society and as individuals–in providing not simply equal access, but equal acceptance and genuine inclusion. Her searing insider’s view of feminist organizations and what they have NOT done to support and learn from women with disabilities is part of her story. It is a story that should be required reading for every feminist.

The evolution of civil rights for people with disabilities built on the civil rights movement of the 1950s and 60s. By 1975 the passage of the federal Education for All Handicapped Children Act made it illegal to deny access to public education to disabled children. But Rousso, whose mother insisted her daughter could and would do everything other children did, attended public schools years earlier.  Dealing with substantial physical challenges, but gifted intellectually, she went on to earn a degree in economics from Brandeis and to train as a therapist at a psychoanalytic institute.  She was asked to leave at the end of her first year—the leaders of the institute thought the signs of her cerebral palsy would distress clients.

Rousso writes with painful honesty of how this obviously illegal, enraging discrimination led her to a clearer understanding of prejudices against people with disabilities—her own as well as those  of others.  The incident, as hurtful as it was, helped her to move from denying her disabilities to identifying with the disabled community, and to “embrace my identity as a person with a disability still further.” Moving reminders of how slow and incomplete this process is for the author and for society are scattered throughout the memoir.

Rousso was a feminist before she was a disability activist. She was puzzled by feminist obliviousness to the double (or triple, if you were a women of color) whammy confronting women with disabilities.  As a board member of various feminist organizations, usually the first and only disabled member, she experienced the excruciatingly slow pace with which many of her new colleagues came to understand these dynamics. Her ‘outsider’ status was one often shared by women of color, she later discovered.  Writing today, she notes “[F]eminists have become more inclusive…[But] even today disabled women are more likely to be included out of obligation…They are not seen as a rich source of diversity. The welcome mat is not yet out.”

The memoir’s 52 brief chapters resemble a conversation with a new friend. We learn first a bit, then a bit more about her life; gradually additional details emerge as the acquaintance deepens. Rousso’s book has the power to trigger further conversations–conversations critical to moving beyond the damaging misconceptions and prejudice still surrounding people with disabilities.

Most feminists, particularly those of us with close personal experience with disabilities, think we understand the issues. We think we are doing what we can, maybe even all we can.  Maybe we are. Maybe we aren’t.  We need to talk about it.

  

Last weekend at the playground, a little boy around three years old approached my daughter Maybelle, who’s also three.  “Are you a boy or a girl?” he asked her.  She didn’t answer—I suspect she wasn’t sure how to process that question.  And to tell the truth, neither was I.

After a pause, I said, “She’s a girl.”

“Then why is she wearing boys’ clothes?” he asked.

This one I knew the answer to:  “Everybody can like Spiderman,” I said.

“Spiderman!” Maybelle agreed enthusiastically.

Maybelle’s dad has begun commenting that when he picks Maybelle up at preschool, the kids are divided by gender on the playground.  It’s not that they’re playing with different things, they just aren’t all playing together.

“Who does Maybelle play with?” I asked.

“Everybody,” he said.  “She doesn’t seem to understand the way they’re dividing.  Nobody turns her away.”

This is one of the interesting things about having a kid with an intellectual disability:  Maybelle doesn’t really get gender.  She calls her bed a “big girl bed,” because that’s the exciting billing we gave it when we made the transition from the crib, but “girl” doesn’t necessarily have any meaning to her.

Her speech therapist occasionally asks her to identify pictures by gender:  “Is that a boy or a girl?”  And Maybelle doesn’t know the answer.

I have to say, I’m glad that she doesn’t.  I recognize the argument that could be made here:  gender is a central component of how our culture works.  In order to be a person who functions in the world as it now operates, a person needs to understand the conventions of gender, the backpack of cultural expectations, needs to be able to use gendered pronouns appropriately and identify girls and boys, men and women.

And yet part of what I do in my job is to try to destabilize all that stuff.  I have a number of students who identify as trans, who are recognizing that they don’t fit within the gender binary that’s been taught to them from day one.  I have a still larger number of students who may identify with a gender, but want that gender to be pretty significantly reworked.  I identify with a gender, but I don’t believe that there are only two genders, nor do I believe that anybody should be automatically consigned to one.

Girls Rock drummerMaybelle currently likes dinosaurs and big trucks.  She’s a tiny bit obsessed with The Sound of Music and John Lee Hooker’s song “Boom Boom.”  She plays drums, and she does “Ring Around a Rosie” with her baby doll.  She rolls a stuffed octopus around the house in a stroller.  One of her favorite items of clothing is her Spiderman sweatshirt.  This sounds like a great collection of interests, one not at all constrained by binary gendered expectations.

When people ask Maybelle, “Is that a boy or a girl?” or “Are you a boy or a girl?”, I think the correct answer might be, “I don’t know.”  Or maybe, “Who cares?”  The fact that gender isn’t intuitively obvious to her might be a benefit.  She might have the opportunity not to have to unlearn the damaging, sexist stuff that my students, my colleagues, my friends, and I have to grapple with.

Last year, I read about a case of a nurse who alleged being sexually harassed by a doctor during her job interview, and a couple of months later I was struck by a report from the Netherlands about the high rate of sexual harassment experienced by female nursing and healthcare workers. Although cases like these make it seem like doctors and managers are the primary perpetrators of sexual harassment, reports show that it is patients who sexually harass nurses most often.

With a recent study suggesting that nurses simply distance themselves from patients who are sexually inappropriate, how do nurses maintain quality health care of these patients? A new book, Catheters, Slurs, and Pick-up Lines: Professional Intimacy in Hospital Nursing (Temple University Press) sheds light on female nurses’ experiences of being sexually harassed by patients.  For this month’s column, I had the chance to ask the author, sociologist Lisa Ruchti, Ph.D. of West Chester University, about nurses experiences of “intimate conflicts” with patients.

Adina Nack: Why did you decide to study the dynamics of patient-nurse interactions?

Lisa Ruchti: I initially thought that nurses’ experiences of sexual harassment by patients would be similar to waitresses’ experiences of sexual harassment by customers because they are each one type of women’s work. Instead, I found that nurses did not refer to their encounters as ‘sexual harassment’ because work culture affects definitions of sexual harassment (other sociologists have found this too; for example, Christine Williams and Kirstin Dellinger).  In nursing, it was the fact that nurses provided both professional and intimate care that contributed to differences in how and when nurses said they were sexually harassed. I became intrigued with the function of intimacy in professional care work and wanted to learn more.

AN: I’m intrigued by the concept of “professional intimacy” – how is this experienced by nurses?

LR: In my work, I found that nurses negotiated a cycle of what I call “professional intimacy” with patients. I also found that negotiating intimate conflict with patients is inextricably a part of how nurses gain their trust. Nurses start with gaining the intimate trust of their patients. This trust sometimes escalates to patients having feelings of familiarity for their nurses, which leads to conflict for the nurse. These conflicts include patients feeling entitled to service beyond the scope of care in nursing, angry verbal interactions, and/or sexualized entitlement. This conflict can also be unavoidable such as the ways that nurses negotiated the sexual encounters between patients and their visitors. Nurses negotiate care through this conflict to renew trust to ensure that quality health care is administered.

AN: How do nurses experience conflict when providing care to patients?

LR: The majority of the 45 nurses I interviewed avoided describing patient care as involving conflict. They used words like nurture, kindness, and compassion to make it seem like nurses “being caring” was a natural personality characteristic characterized by goodness. Feminist philosopher Eva Kittay discusses this in her work: patients are not usually described as anything other than “needy,” and we don’t tend to think of needy people as causing conflicts for those who provide their care. My focus on identifying conflict is as much about seeing patients clearly as it is about seeing the work of nurses clearly.

AN: You make a key point about not only a nurse’s sex but also her race/ethnicity shaping her experiences of patients’ harassment – can you give a couple of examples of how nurses described these interactions?

LR: It is one thing for nurses to manage sexually explicit language or touches; it is quite another when those are combined with racial slurs and epithets.  Imagine that a nurse not only walks in to check on a patient and sees himmasturbating, but she is also called a “dirty foreigner.” Or, a nurses isgiving a patient a bath, and the patient says you remind him of his mammy. It was incredibly important for me to look at the function of multiple identities since I was looking at intimate care as something that is constructed in interaction between patients and nurses and informed by social ideologies. Intersectionality is an incredibly useful tool when explaining complex social experiences.

AN: As a medical sociologist, I was instantly hooked by your book’s title, but I can also see why many of us — not just nurses — should read your book. 

LR: Thanks, I wrote it not just to give voice to nurses but also because almost all of us have all been patients or visited loved ones in hospitals. Many of us have or will have long medical journeys at some point in our lives, and this book can help us understand a vital part of that journey. If we can better understand the lives of those who are taking care of us, then we can help ensure that quality care occurs when we need it.  Other studies have documented how much nurses care about patients, and it’s time for us to listen to their stories – we need to understand their experiences of caring for us.

KYLA: We are having the wrong conversation(s). This is the conclusion I came to after attending an amazing community dialogue on Gender Identity Disorder (GID) in the Diagnostic and Statistical Manual (DSM).  Part of the NYC Quorum Forum, the dialogue explored how language is used in ongoing debates around GID to “distance gender expression/experiences from other experiences currently described in the DSM.”

This was far from the first time I’ve thought about the DSM within my work on transgender legal protections.  Indeed, when discussing various legal strategies for employment discrimination recourse, I often bring up the article written by Levi and Klein in Transgender Rights on using disability law to protect transgender workers.  I have also done a lot of reading on the pathologization and stigmatization caused by a diagnosis of GID and engaged in conversations on the removal of this diagnosis or its transference to a medical rather than psychiatric diagnosis.  And I’ve chewed on Andrew Sharpe’s point about how the GID excludes members of the transgender and gender non-conforming population whose identities do not fit into the narrow narrative the DSM has established as the “right” narrative for accessing treatment and care.

Despite all of this, my brain never quite connected these two conversations – the pathologization of DSM diagnoses and the connections between transgender and disability rights.  But thanks to the folks who gathered in Bluestockings for this dialogue and demanded more from our community/movement/whatever you want to call it, my brain is working in new directions now.  And these directions feel darn exciting.

As much as I appreciate the advocacy people are conducting around the upcoming revision of the DSM, I don’t believe talking about a removal of GID is the right conversation at this time.  The fact is access to health care and coverage often hinges on a diagnosis.  DSM diagnoses are also used in courts to prove the legitimacy of a transgender plaintiff who is bringing forward a discrimination claim.  Now, do I think either of these things are right?  NO!  But these are currently the structures we are operating under.

Now, let’s definitely talk about changing the way our legal system works and expanding its overly narrow definitions of who fits into protected categories and who isn’t deserving of protection.  And let’s definitely continue the fight for universal affordable quality healthcare that includes the specific healthcare needs of trans communities.  But it is my belief that we need to work towards these goals first before considering the removal of GID from the DSM.

In the meantime, we can learn a lot from the disability rights movement.  Like how a diagnosis or a disability is not necessarily the sum total of your being.  Rather, it is part of who you are – and for some, it can be an empowering part.  Let’s challenge the rampant stigmatization around psychiatric and medical diagnosis. I believe that in engaging in this work and these conversations our movement for collective liberation* will only be made stronger.

* Thanks to Dickerson for introducing me to this term!

AVORY: Thanks so much for bringing this topic up, Kyla!  As our readers are about to learn, I have a lot to say on the subject…

There are two basic strains to the diagnosis question, as I see it.  One is the narrow definition of what “transition” means.  The other is the connection you’ve identified between transgender identity and (dis)ability.

First, what is transition?

There is one fairly well recognized, if not well understood medical model that involves a cognitive distance between gender identity and “physical sex,” followed by therapy, GID diagnosis, and physical transition from one binary gender to the other through some combination of hormones and surgery.  In this process, some might argue that there is a clear end point to transition, that once a person has completed surgery/ies and is living as the “opposite” gender, he or she “has transitioned.”  Of course, there are attendant social and legal elements to this–friends and family recognizing the transition, gender marker being changed on ID documents, etc.

Of course, this isn’t exactly what everyone who is MTF or FTM and chooses to medically transition goes through.  Some do all these steps but don’t identify with their gender exactly the way their therapist wants.  Not everyone who completes these steps considers transition “complete” or wants to pass as cisgender.  Moving out from this narrow definition, there then those who choose limited or no surgical intervention, but do take hormones.  There are those who do not take hormones.  There are those who are perfectly happy with what others perceive as a “male” body while using a female name, pronouns, and identity (and vice versa).  And there are non-binary folks like me, or binary trans folks who aren’t quite comfortable with the straight-line transition narrative from one gender to the “opposite.”

The point of all this is that the GID diagnosis, and the recognized standards of care around that diagnosis, narrow the cultural and legal understanding of “transition.”  Most trans people know that there are many ways to transition, but those outside the community may continue to see transition very narrowly, and reject those who do not fit the model.  Lawmakers also tend to make law based on what medicine says about trans people, so in some cases the GID definition limits ability to legally transition.

GID also privileges certain forms of gender expression, and certain transition paths, over others.  In order to get a GID diagnosis, some trans people have to drastically alter their authentic gender presentation to “convince” a therapist or be eligible for medical intervention.  Some non-binary people, for example, would be more comfortable having chest surgery, but in order to convince a doctor that this surgery is needed, have to fit into an FTM or MTF mold.

The second issue, as Kyla points out, is the connection between transgender and (dis)ability.

What is disability?  Often, it is an inability to do things in the “normal” way.  Most people perceive things through sight and sound, so those who cannot see or hear are seen as “disabled.”  Most people move through the world by walking on their feet, so those who use prosthetic limbs or roll down the street in a chair are seen as “disabled.”  There wouldn’t be a concept of disability without a concept of ability, or the “normal” way of doing things.

This frame doesn’t only apply to things we think of as disability-related.  Some examples:

– It’s “weird” to talk with your hands instead of your mouth

– It’s “weird” to express yourself very emotionally, or to express yourself very infrequently

– It’s “weird” not to think and feel within a certain realm of acceptable thoughts and feelings

– It’s “weird” to prefer the same sex

– It’s “weird” to have multiple partners

– It’s “weird” to have a gender that doesn’t culturally “match” chromosomal or physical “sex”

Those who are perceived as “weird” often form distinct communities based on different ways of doing things.  Because of privilege, the majority doesn’t generally question its view of what’s “normal” and what’s “weird,” but those in a particular community may consider their version perfectly normal.  For example, in the Deaf community, communicating through sign language is not considered a “disability.”  Many transgender people, similarly, don’t see themselves or their friends as having a “disorder.”

These differing perceptions, unsurprisingly, tend to create rifts between communities.  The idea of “ability” or “normality” is used by the majority as a protective mechanism.  If you’re weird, I’m okay.  There’s a discomfort with different ways of doing things, because if those ways are normal, the majority has to question its own ways.  Both the disability model and the gender binary are a kind of line-drawing that makes the majority comfortable.  I am on one side of the line, you are on the other.

From the perspective of someone on the “other” side of the line, these categories may seem quite arbitrary.  For example, I recently read a post on Sociological Images about two runners who use prostheses.  There is a resistance to allowing disabled runners to compete alongside those running on their natural legs, explained by the possibility of some advantage being conferred by the prosthesis.  A prosthesis is seen as an “unnatural” advantage, but we don’t say the same about very tall basketball players or very short gymnasts.  Similarly, we have no problem with people being beautiful, happy, or comfortable in their gender without surgery or hormones, but those who need medical intervention to reach this state are seen as “wrong.”

The fact is, there’s nothing inherently wrong or unnatural about having a gender that doesn’t “correspond” in our cultural understanding to chromosome makeup or birth genitalia.  It’s difficult to be transgender because of stigma, social harm, lack of access to care, and other reasons.  Many of the justifications for putting transgender in the DSM are based on the social response to trans identities and the harm it causes to trans people, rather than on the simple state of being transgender.  It’s a disorder because society defines order.

This is not to minimize what it’s like to live in a body that feels wrong.  Even if these societal harms didn’t exist, if we were correctly gendered no matter what our bodies looked like, there would likely still be dysphoria and some people would still need surgery to feel right in their bodies.  But it is unclear why we should treat this need for surgical correction as indicating a disorder.  Is having wisdom teeth a disorder?  Are the cultural and ritual changes that take place in many other areas indicative of a disorder?  When we look at it this way, the norm of having the same sex characteristics throughout life seems rather arbitrary, kind of like talking with our mouths rather than our hands.

Like people with disabilities, transgender people are harmed by others not understanding the way we perceive the world, by lack of education, and by difficulty finding affirming community.

This brings us back to the question of the GID diagnosis, and the benefits Kyla points out–access to healthcare and the use of GID in discrimination claims.  Those benefits are real, and I agree that there are big changes we need to make before taking transgender out of the medical sphere entirely will benefit trans people.  However, I would argue that there should be a change in the DSM to less stigmatizing vocabulary.  The DSM-V criteria under consideration offer a mostly workable concept of gender dysphoria.

I’m not an expert in diagnostic criteria, and so I can’t guess what the implications of the revision being considered would be.  However, I do think it makes sense to frame gender transition as something (covered by insurance) that some need and some don’t.  A condition doesn’t have to be a stigmatized disorder to ensure access and insurance coverage.  For example, near-sightedness isn’t a stigmatized problem–you just get glasses.  Birth control for contraceptive purposes is covered as a legitimate form of preventive care.  I can even imagine framing transition as preventive care–not a sign of a disorder, but something that is necessary to prevent later health problems.

The bottom line for me is that we have to have a serious paradigm shift as a society, and I think the DSM-V provides at least one opportunity to start making that change.

KYLA: I love the idea of using conversations around DSM revisions as an opportunity for paradigm shifts!  That is such an exciting re-framing of what has typically been a very painful conversation.

I also want to use this opportunity to contextualize coverage for birth control.  Yes, it’s fantastic that about 9 in 10 employer-sponsored insurance plans now cover a full range of prescription contraceptions.  But this is only thanks to over two decades of hard core activism, a history which may be too easily forgotten.  Gloria Feldt lays out this strategy in her final chapter of The War on Choice and the National Women’s Law Center has a handy-dandy timeline of this push for coverage of contraceptives.  You can also read about the first big victory in 1998 where activists successfully used insurance coverage of Viagra to point out the absurdity of not covering birth control.  It’s important to remember this history, especially in light of the backlash to President Obama’s recent mandate for birth control coverage and this week’s no-girls-allowed Congressional hearing on birth control.

When it comes to insurance, there are many battle fronts to fight on.  Perhaps this is another opportunity to use the collective liberation strategy to push for real change that leaves no one behind.

 

A few years back I was a regular blogger about the Roe v. Wade anniversary. As it turns out, the last post I wrote about Roe v. Wade was in 2008. That would be a blog post I wrote while I was already pregnant with Maybelle but wasn’t publicly announcing it. I was intentionally, happily pregnant, and I was still adamantly in favor of women’s reproductive rights. This is an important thing to recognize.

I’ve obviously had a lot of other stuff going on since then. I’ve been blogging a lot about parenthood, and about disability rights. But this year I’d like to return to the old tradition and write a post offering a shout out to women’s reproductive freedom.

As I’ve always said, a woman’s control over her own reproduction affects every aspect of her life. Every aspect. So I maintain now, as I always have, that we must give women the right to end a pregnancy if they don’t want to be pregnant, and the pregnant women themselves are the ones who get to decide why they don’t want to be pregnant. It’s not a decision that other folks should have a legal right to weigh in on.

I also want to say that I’ve been pretty powerfully influenced by readings I’ve been doing about reproductive justice. When feminists talk about reproductive rights, generally they’re talking–as I am here–about the right to have an abortion. And this is hugely important. But reproductive justice expands that concept. Scholar Kimala Price explains that the reproductive justice movement’s “three core values are: the right to have an abortion, the right to have children, and the right to parent those children.” If we really want women to have control over their reproduction, that doesn’t just mean that they get to choose not to be pregnant. It also means that they get to choose to have and parent children.

Here’s another great quote from Dorothy Roberts in Killing the Black Body (please note that if you’re in my capstone course, this is the book we’re discussing on Thursday):

Reproductive liberty must encompass more than the protection of an individual woman’s choice to end her pregnancy. It must encompass the full range of procreative activities, including the ability to bear a child, and it must acknowledge that we make reproductive decisions within a social context, including inequalities of wealth and power. Reproductive freedom is a matter of social justice, not individual choice.

Why is this particularly important to me these days? Because I’m doing research on prenatal testing, and we know that when a person has prenatal testing and learns that the fetus has Down syndrome, 90% of those fetuses are terminated. And we all know that when 90% of a group is doing something, it’s no longer a matter of simple “choice.” As Roberts notes in the quotes above, we’re not simply individuals in a bubble, with 90% randomly choosing termination. “We make reproductive decisions within a social context,” and our social context tends to tell us that kids with Down syndrome are no good. Defective product. Best to get rid of that fetus and start over.

Dancing and singingBiffle and I didn’t decide to get rid of that fetus, and we’re incredibly glad about that.

I’m adamant that we–and all other potential parents–should have the right to terminate any pregnancy that’s unwanted. My ability to choose not to be pregnant is as important now as it’s ever been in my life, if not moreso.

But I also see it as part of my reproductive activism to change the social context that would identify my daughter as a defective product (and the word “defective” is often used in descriptions of Down syndrome, trust me–that’s not me being hyperbolic). I want to change the inaccurate perceptions of Down syndrome that not only affect people’s decisions while pregnant, but that affect the options available to folks who are here in the world: school inclusion, for instance, college possibilities, media representations, availability of jobs.

Is it a stretch to say that programs like REACH are connected to my reproductive justice activism? Maybe a tiny stretch, but only tiny, because if I’d known while I was pregnant that I was soon going to be teaching people with Down syndrome in my college classes, that would have immediately challenged the stereotypes of Down syndrome that were frolicking unnoticed in my mind.

Perhaps I would have had a clue that the thing that’s really challenging is parenting.  The hardest things for me about being a parent have nothing at all to do with Down syndrome.  Learning ASL so that Maybelle can communicate earlier?  Easy and fun!  Dealing with a person in your house who says “NO!” to every single question you ask?  Challenging (and developmentally appropriate)!

Alright, so hurray for Roe v. Wade.  People who can get pregnant don’t have full humanity unless they have the right to control their own bodies.  And hurray for reproductive justice, which reminds us that reproduction is a far larger issue than abortion, an issue that urges us to make the world a place worth living in.

The end. (Cross-posted at Baxter Sez.)

2011 brought us two top-selling autobiographical takes on female aging. Jane Fonda’s Prime Time asks readers to explore everything from friendship to fitness to sex, with a goal of having us accept that “people in their 70s can be sexually attractive and sexually active.”  Betty White’s If you Ask Me (And Of Course You Won’t) offers readers a candid and often humorous take on the last 15 years of her life. White warns of the pitfall of our youth-centric culture: “So many of us start dreading age when we’re in high school. And I think that’s really a waste of a lovely life.”  While these celebrity authors paint provocative personal portraits of aging, I’m drawn to the new book by Colgate sociologist Meika Loe, Ph.D.: Aging Our Way: Lessons for Living from 85 and Beyond (Oxford University Press) charts her three-year journey following the lives of 30 diverse “elders” (women and men ages 85 to 102 years old), most of whom were aging at home and making it work.

Aging Our Way: Lessons for Living from 85 and Beyond

Adina Nack: How did your last book on the Viagra phenomenon lead you to your new book on the ‘oldest old’?

Meika Loe: For The Rise of Viagra I interviewed elder men and elder women partners of Viagra users. It became clear that ageism impacted their lives and was a key ideology that propelled the Viagra phenomenon forward. Afterwards, I missed those interactions with elders and wanted to know more about their experiences aging at home. Aging Our Way ended up being a book that focuses more on elder women’s experiences, voices that had been marginalized, if not completely absent, from the media coverage of the Viagra phenomenon.  In the 85+ age group, women outnumber men by almost 3 to 1, and close to 80% of elders living at home alone are women. Too many people assume that research on elders is sad and depressing, in comparison to research on Viagra. To the contrary! I find elders’ stories inspirational. Aging Our Way features the lessons I learned from them – lessons for all ages.

AN: Aside from the Viagra interviews, what inspired you to focus on this group of people who are all more than twice your age?

ML: I was extremely close with my grandparents and great-grandparents growing up. More recently, I rent a room from a village elder in the small town where I work. Living with her, an invisible world opened up to me – a world of widows caring for one another and collectively attending to quality of life, mostly in the absence of biological kin.  Like, Carol, my seventy-something landlady, who gets a check-in call from octogenarian Joanne every morning at 8 a.m. Then Carol calls 98-year-old Ruth. All of these widows have lived alone in their homes within 10 square blocks of each other for decades, and now they constitute a social family. Once in a great while, when Carol cannot reach Ruth, she’ll grab the extra key and head to her home to make sure everything is okay. One time she found Ruth on the floor.

AN: That must have been scary – so, even with this type of ‘morning phone tree’, isn’t isolation a problem for these women and men aging alone?

ML: Yes, like most of us, elders attempt that delicate balancing act between dependence and independence every day. So, while many of these elders value independent-living, they’re also adept at building social networks. Ruth H. is committed to making a new friend every year of her life: she reaches out to my campus’s Adopt-a-Grandparent group and has five student walking partners this year, all new friends. That said, aging alone comes with its share of isolation and risk, and I’m reminded of Elizabeth, a Navy veteran and high school English teacher who insisted on living alone in her home, amidst her longtime friends and neighbors, despite her children’s pleas for her to move to Georgia. Elizabeth recently passed away during Hurricane Irene. She was inspecting her basement for flooding and must have fallen. This is such a sad story, but Elizabeth would not have wanted it any other way: she said she wanted to die with her boots on.

AN: Do women have an advantage over men when it comes to longevity and aging?

ML: Social epidemiologists Lorber and Moore have shown that women live longer but not necessarily healthier lives. Traditional gender roles take their toll: often, women prioritize caring for others for so long that their own health suffers.  Perhaps as a result, women have higher rates of chronic illness and depression. At the same time, many of the women I followed are enjoying a chapter in their lives where they can focus on themselves, their communities, their gardens, and their own health. Shana, 95, says things like “Now I am finally living for myself. Now I can focus on me.” Most women have lifelong gendered skill-sets for self-care: systems for food preparation, cleaning, bathing, budgeting, and reaching out to others. The men I followed are less adept at those skills: they had never been expected to cook and clean. So men, like Glenn, told me about having to learn these skills after the loss of their spouses.

AN: Does caretaking of others really end at age 85?

ML: Caretaking continues, often in new and familiar ways.  I think of Olga, age 97, caring for her grandson every weekend and putting aside a few dollars every day for her daughter who is battling cancer.  In her subsidized senior housing community, she delivers hot meals, hems pants, and runs errands. By caretaking, Olga feels a sense of community, a web of support. When she needs assistance, she has options and knows where to turn. So contrary to expecting nonagenarians to be sickly and dependent, many not only receive but also give care.

AN: Talk of cutting Social Security and Medicare has been in the news – how did you see these programs impacting elders’ lives?

ML: I have to admit – in my 30s, I see money going out of my paycheck—and I remind myself that that money is put aside for when I need it – I just hope it will be there! Through this research I saw how and why programs like Medicare and Social Security matter. For example, Juana worked in factories her whole adult life, and her small Social Security check keeps her hovering above the poverty line, able to afford rice and beans for the family and to pay for cable TV so she can watch her beloved Yankees.  Medicare covers annual doctor’s visits that likely keep her from spending time in the emergency room, a more expensive cost for society. Like most elders, she depends on Social Security for a significant portion of her income.

AN: Why should we all – not just the elders in the U.S. – read your book?

ML: Undergrads come to my Sociology of Aging course with all sorts of preconceived notions. They dread aging, seeing it as synonymous with depression, disease, and death. Our ageist society has taught them that aging equals loss, and they’re surprised to learn about elders who are aging on their own terms: coordinating self-care, combating isolation and loneliness, and exercising autonomy and control – sometimes in the face of disabilities and chronic illnesses. We all benefit from learning creativity, connectivity and resiliency from our elders. They teach us crucial lessons about all stages in life: living in moderation, designing comfortable spaces, constructing social families, appreciating humor and touch, and building social capital.  And, let’s face it, if we’re lucky, then we will all be elders soon enough.

This week, a drug company called Sequenom has made their prenatal blood test, MaterniT21, available in select markets.  This is the test I made reference to in a post or two over the summer:  it’s the test that can examine fetal DNA from a maternal blood sample.  What this means is that it can provide the information that, until now, could only be gotten from amniocentesis or CVS, and these are tests that carry a risk of miscarriage.

Well, I say it can provide the information that an amnio or CVS provides.  These are tests that examine fetal genetics for a wide range of things.  MaterniT21 looks for one thing, and one thing only:  Down syndrome.

Amber Cantrell and I have interviewed quite a few women as part of an extended research project. Those who’ve chosen not to have an amnio or a cvs have said this was because of the risk of miscarriage.  A maternal blood test carries no risk of miscarriage, and it can be done quite a bit earlier in the pregnancy than an amniocentesis.  Earlier in the pregnancy matters because 90% of people who discover through testing that their fetus has Down syndrome decide to terminate the pregnancy.  If you can learn that your fetus has Down syndrome earlier in the pregnancy, abortion is safer and easier.

As you all know, I am a big advocate of reproductive rights, so this isn’t a post saying that folks shouldn’t have abortions.  It’s a post saying that I’m interested in seeing how this new technology affects our conversations about parenthood and disability.  We’re a culture that often lets technology–rather than thoughtful ethical conversations, for instance–take the lead.  So where will this technology lead us?  What will it mean for the decision-making processes of women who are pregnant?  What will it mean for people, like my daughter, who have Down syndrome?

Cross-posted at Baxter Sez.

Photo Cred: Fighting for Our Rights and Gender Equality at Winona State University

AVORY:

When Kyla suggested that we do a post on non-normative bodies for Love Your Body Day, I was enthusiastic.  The more I thought about it, though, the more difficulty I had defining a non-normative body.  Non-normative with reference to what norm?  This is an important question for determining body-related policy goals, because a body might appear “normal” but be strongly mismatched with a person’s identity.  If we want to encourage feminists to include non-normative bodies in body-positive messaging and policy, we need to be aware that people relate to their bodies in different ways.

The feminist goal of body positivity and acceptance is a good one, and I don’t support policies that encourage body shame and negativity.  But rather than spreading an unqualified “Love Your Body” message, it is important to pay some attention to how people define their own normal.

For example, I support health at every size (HAES) policies in public health, which avoid shaming fat bodies that don’t meet an unrealistic thin “normal.” I am opposed to policies that exclude transgender bodies that don’t meet the standard some call normative for transgender bodies–a standard that requires genital surgery and/or hormone treatment, and little ambiguity in one’s gender presentation.

On the other hand, I am aware that by most standards, my body is extremely normative.  My genderqueer identity is invisible, so most people aren’t aware that my body doesn’t “match” my gender (there’s no match for my identity, in fact).  So I am sensitive to feminist messaging that unequivocally encourages body love.  For example, in a room full of people who seem to be women, it is dangerous to spread an essentialist message focusing on feminine wisdom that comes from menstruation and the ability to make babies.  Are you sure that everyone in the room feels comfortable with “feminine?”  Are you sure that everyone in the room menstruates, or can make babies?

KYLA:

Yes, oh my lord, yes!  The annual Love Your Body Day is always a tricky one for me on a personal and political level.  While I think it is essential that we create more and more space for people to live in their bodies, express themselves through their bodies, and feel comfortable navigating this world in their body, I recognize that this is no easy task in our body-negative society.  Also, “loving your body” means different things to different people depending on their relationship between their body, their identity, and how society perceives them.  My concern is that often the rhetoric of “love your body” doesn’t go deep enough or reach enough people. Who is being left out of the conversation?  I think that often fat people, trans people, and people with disabilities, for example, are not included.

As a fat, tall woman, it is a daily struggle to inhabit my body.  I have worked to love my body as soon as I discovered that it was an option to do so.  My college admissions essay was about frumpy sweater day—a day I invented in high school to deal with the constant judgment I faced.  Whenever I got sick of people commenting (with words or just looks) on my body, I donned this frumpy sweater that used to my father’s.  It was my shield.  I knew I looked ridiculous; that was the point.  I was daring peope to judge me on what I was wearing rather than what I said.  If they couldn’t get past the superficial, then it said more about them than me.  It was my way of saying, “I give up. I no longer care. On to more important things.”

Even though this coping mechanism made it easier for me to navigate the tumultuous hallways of a preppy high school, it did nothing to help me find strength in my body.  In fact, it may have alienated me further.  I figured that loving your body didn’t apply to me.  If the cute girl with perfectly coiffed hair sitting next to me hated her body, how could I be expected to love mine?

Our society is so saturated with body hatred that saying “love your body” to cisgender, able-bodied, non-queer, thin (the list goes on) people is a radical act.  But surely you don’t mean that a fat woman should love her body, right?  Or that people with disabilities should find power in their differently abled bodies?  Or that transgender and genderqueer people should find pleasure in their bodies that defy assumptions?

But I think that’s exactly where we need to go to counteract pervasive body negativity.  On this Love Your Body Day, I want to explore how we create space for people with so-called non-normative bodies (for lack of a better term) to truly love their bodies and how that inclusion will alter the conversation. I’m not going to even pretend that I have the answers.  Instead, I’d like to highlight some fantastic work already being done on this front:

Nolose.org

A community for fat dykes/lesbians, bisexual women, transgender folks, and our allies seeking to end fat oppression!

Eli Clare

White, disabled, and genderqueer, Eli Clare happily lives in the Green Mountains of Vermont where he writes and proudly claims a penchant for rabble-rousing. He has written a book of essays Exile and Pride: Disability, Queerness, and Liberation (South End Press, 1999, 2009) and a collection of poetry The Marrows Telling: Words in Motion (Homofactus Press, 2007) and has been published in many periodicals and anthologies. Eli speaks, teaches, and facilitates all over the United States and Canada at conferences, community events, and colleges about disability, queer and trans identities, and social justice. Among other pursuits, he has walked across the United States for peace, coordinated a rape prevention program, and helped organize the first ever Queerness and Disability Conference. When he’s not writing or on the road, you can find him reading, hiking, camping, riding his recumbent trike, or otherwise having fun adventures.

Dylan Vade and Sondra Solovay. 2009. Shared Struggles in Fat and Transgender Law. In The Fat Studies Reader, ed. Sondra Solovay and Esther Rothblum.

What if our laws and courts assumed this: Every person is different. We move differently, work differently, dress differently, express gender differently? What if difference were the given? And, what if bodies were a given? We all have bodies. Our bodies come in different sizes, styles and shapes.

We need to recognize there is no bright line dividing man from woman, fat from thin. Let’s stop visualizing a continuum, with man at one end and woman at the other, or thin at one end and fat at the other. Dividing lines and continuum-style lines lead to the law of norms and make it far too easy for courts to threaten those who fall outside the norm with loss of children, employment, and opportunity — unless, or course, they support the norm, pray to the norm, and reinforce the norm.

Why I’m Fat Positive” from You’re Welcome, blog about the impact of public policy on marginalized communities

I’m fat positive because I identify as queer, a category designed to upset essentialist thinking about sexuality and gender. There are tidy lines of thought that prescribe that male = man = masculine = straight, and female = woman = feminine = straight. Fatphobia is one of many things that props all that up. By regulating what our bodies can and can’t look like (in a very gender-specific way), fatphobia perpetuates normative gender and sexuality in a way that keeps all of us trapped.

Can a Fat Woman Call Herself Disabled? Disability & Society, Volume 12 Number 1 February 1997 pp. 31-41

As an ostensibly able-bodied fat woman I discuss my experimental usage of ‘disabled’ to self-define, asserting that this is a problematic label. I criticise some of the mutual misconceptions fat and disabled people share, especially the rle of medicalisation, and I explore some similarities and differences in our respective struggles for civil rights. I suggest that identifying as disabled is political in origin, and that disability politics offer and important precedent for fat people.

The Adipositivity Project aims to promote size acceptance, not by listing the merits of big people, or detailing examples of excellence (these things are easily seen all around us), but rather, through a visual display of fat physicality. The sort that’s normally unseen.

Tasha Fierce, “Sex and the Fat Girl” column at Bitch Magazine.

Tasha Fierce is a 31-year-old sex-positive feminist of color, queer high femme, unabashed fat chick, cupcake lover and Los Angeles native. She’s written about body image, fat acceptance, queer issues, race politics and sexuality for various independent publications online and offline since 1996.

Shooting Beauty

Shooting Beauty tells the inspirational story of an aspiring fashion photographer named Courtney Bent whose career takes an unexpected turn when she discovers a hidden world of beauty at a center for people living with significant disabilities. Shot over the span of a decade, this film puts you in Courtney’s shoes as she overcomes her own unspoken prejudices and begins inventing cameras accessible to her new friends. Courtney’s efforts snowball into an award-winning photography program called “Picture This”—and become the backdrop for this eye-opening story about romance, loss and laughter that will change what you thought you knew about living with a disability—and without one.

Adios Barbie (blog)

We say “adios” to narrow beauty and identity standards. We say “hello” to frank talk about race, class, age, ability, gender, sexual orientation, size and how our multiple identities shape the way we feel in our bodies–and in the world. (Yeah, it’s a mouthful. But it’s also real.) We’re committed to creating a world where everyone is safe, powerful and at home with who they are.

Dances with Fat (blog)

Regan Chastain is 5’4, 284 pound dancer and choreographer who blogs not only about fat acceptance and fat positivity, but about using a fat body to do glorious, creative things.  She challenges the stereotype of a thin dancer and in general helps to break down barriers around a narrow concept of what a dancer looks like, encouraging readers to use their bodies and criticizing those who equate “fat” with unable to move.

Jacyln Friedman, What You Really Really Want (Seal Press 2011)

This manual to reclaiming your sexuality, using an enthusiastic consent model, includes body love exercises that don’t have any particular requirements about body type–the book is inclusive of fat women, trans women, genderqueer people, people with disabilities, etc. and acknowledges the difficulties in body-love, particularly for survivors of sexual assault.

Genderfork is a website that offers examples of different gender expression that aren’t often available elsewhere, from photos to quotes to profiles of those who identify as gender variant in some way.  Genderfork focuses on genderqueer, gender variant, gender fluid, and other non-binary genders, but also includes transgender contributors and cis people with non-normative gender expressions. 

This post is part of the 2011 Love Your Body Day blog carnival