[x-posted from FWD/Forward: Feminists With Disabilities]
As a feminist, I am pro-choice. Abortion should be safe, legal, and accessible.
As a feminist, I look at more than whether single, individual women have access to abortion. There is a much broader reproductive justice framework that must be scrutinised, critiqued and repaired so that all women have access to informed, supported reproductive choices.
Women who have been denied informed, supported reproductive choices in the past include more than the wealthy, non-disabled white women who dominate pro-choice conversations. Marginalised groups are as likely to be fighting for their right to reproduce as their right not to – people of colour, trans people, lesbians, and of course women with disabilities, who have been denied sex education and forcibly subjected to contraception and sterilisation for centuries.
To that list of marginalised groups, of people who are often denied truly informed and supported choices, we can perhaps add – people pregnant with fetuses who may have a prenatal diagnosis of a disability.
As a feminist, I believe that we can have the abortion-rights conversation without marginalising, othering, and disparaging people with disabilities. I believe we can talk about abortion within that broader framework of reproductive justice, and that we can confront the ableism that creeps into some abortion-rights conversations head-on. This takes effort; we must think clearly, write carefully, read closely.
Yes, some forced-birthers will try to appropriate our words for their own ends. We need to remember that they are responsible for their own misreadings and misrepresentations, not us. We need to not let their twisted, misogynist agendas control what we say. They must not stop us from speaking out.
Law & Order, “Dignity”
So, guess what I did today? I swallowed my intense dislike of popular TV crimeporn show Law & Order, and watched episode 20×05, “Dignity”, in which a bloke murders a doctor who provides abortion services, to “save” his daughter’s fetus, diagnosed prenatally with Ehlers Danlos syndrome.
[clips, transcripts and a lot more discussion are below the cut]
Before we start, a little background on Ehlers Danlos syndrome (EDS). EDS is not one condition; it is a heterogeneous group of conditions caused by differences in genes coding for collagen proteins. Collagen is a key ingredient in all connective tissue, including skin and ligaments. The commonest EDS types manifest primarily as joint hypermobility or as very elastic skin. EDS often goes undiagnosed until adulthood, or completely undiagnosed throughout life.
There is a very, very rare variety of EDS called dermatosparaxis which involvs fragile, floppy skin and easy bruising; there have been ten published case reports of this variety worldwide. Within that group, the severity is still heterogeneous – check out this blog Sense and Disability, by a woman with dermatosparaxis who has studied at Oxford and backpacked through Europe.
Let’s have a look at the episode. I’m not going to go into a detailed recap; you can check one out here at All Things Law & Order: “Law & Order “Dignity” Recap & Review”. The case is a ripped-from-the-headlines story with many details closely resembling the terroristic murder of Dr George Tiller, one of a half-handful of late term abortion providers in the USA. The show adds a number of details that appear designed to showcase forced-birther ideas, such as the invented detail that the slain doctor had in the past murdered a live newborn. The murderer’s defence argument centres around the idea that he is trying to save a fetus from the abortion that his daughter has scheduled.
The fetus in question has apparently been diagnosed with Ehlers Danlos syndrome (EDS). At first, oddly, we’re told that it has “Fragile Skin Disease”, which typically refers to a completely different set of keratin-related conditions, epidermolysis bullosa. The show does not elaborate on how the EDS was supposedly detected (prenatal gene testing is not routine), or the fact that EDS is heterogeneous and that people with EDS vary widely in phenotype, or, well, any other facts, really. We just get this:
[Scene: Two detectives, Lupo and Bernard, are interviewing Kevin, the father of the pregnant woman, Blair.]
Kevin: Blair’s baby was diagnosed with Ehlers Danlos syndrome. The skin is so delicate the slightest touch causes tearing. It can be fatal without constant medical care.
Bernard: But you were willing to take on that responsibility? That’s a big commitment.
Kevin: Yep. I told Blair I’d work three jobs if I had to, we’d find the money.
Lupo: Your daughter told us she didn’t want the baby.
Kevin: She should have made the decision earlier. She’s 28 weeks. That’s not a fetus, that’s a child.
Lupo: And did you try to talk to Dr Benning? He got calls from someone claiming to be from the baby’s father.
Kevin: I thought he’d be more likely to talk to me if I had parental rights.
Lupo: And when he didn’t take your calls, what did you do? Mr Morton? Did you go to his clinic?
Lupo: Maybe you found out where he lived? Maybe you followed him to church?
Kevin: I went for a long walk. Things had been tense at home – Blair getting pregnant, it’s my fault. Ever since her mother died I’ve let her run wild. I wanted to take responsibility, but not with a gun.
Scene: the courtroom, where Kevin Morton is on trial for Dr Walter Benning’s murder. An OBGYN, Dr Blum, is on the stand, being interviewed by prosecutor Cutter.
Blum: As a board-certified OBGYN, I conducted peer reviews of Dr Benning’s practice. In my opinion, Walter Benning was a caring adn heroic physician.
Cutter: Did you review Dr Benning’s file on Blair Morton and her unborn child?
Blum: Yes. Regrettably, I concluded that child is doomed to a life of suffering that will require round-the-clock care.
Cutter: So in your expert opinion, was it reasonable for Dr Benning to abort Blair Morton’s unborn child?
Blum: Not only was it reasonable, it was the only responsible medical choice.
Cutter: Thankyou. [leaves]
Jenkins (defence): A fetus is viable outside the womb as early as 22 weeks, right doctor?
Blum: With state-of-the-art neonatal technology, yes.
Jenkins: Two weeks less than the period in which New York State allows abortion on demand. Would you agree that the law hasn’t kept up with medical science?
Blum: I don’t play that line-in-the-sand game. The right to choice is absolute.
Jenkins: Absolute? You would allow abortions up to the very moment of birth?
Blum: In cases of medical necessity, yes. The decision should involve only the mother and her doctor.
Jenkins: You don’t believe society has an interest in protecting life?
Blum: Life as defined by whom? Crackpots like your client?
Jenkins: So. Even though Blair Morton’s son was viable. Even though science might provide effective treatment for Ehlers-Danlos, even a cure in the child’s lifetime, you would have ended his life?
Blum: I don’t indulge in pie-in-the-sky thinking. As of today, the life that child will experience is compromised and without dignity.
Jenkins: Dignity? As defined by you? Would you volunteer to abort Blair’s baby even now?
Blum: Yes. If you asked me, I would. Threats and intimidation won’t keep us from providing abortions to the women who want them.
Jenkins: What if the law says you can’t?
Blum: Even the politicians bow to the hypocrites and fools, it won’t stop us.
Jenkins: “Hypocrites and fools”. Thankyou, doctor.
Given the messy, almost overwhelmingly anti-choice nature of the rest of the episode, I tried to write off this testimony as the show’s writers deliberately portraying the doctor as unrealistically ableist and absolutist: a fictional meanyhead. But I kept getting stuck on that reading, simply because this portrayal is not unrealistic. This is exactly what a lot of doctors say to people who come to them for answers, for help making decisions. Because they’re stuck head-first in the medical model of disability. Prenatal screening – first-trimester screening, triple testing, amniocentesis, ultrasound – is scheduled routinely by many, without discussion with the pregnant person concerned as to whether they wish for screening, and what types of screening they will choose. People who decline screening are treated with suspicion, and can be denied their choice of care due to inappropriate “high risk” determinations. When a prenatal diagnosis pops up, some doctors are already flicking through their book to schedule an abortion, before checking to see if that’s what is actually wanted.
The Medical Model of Disability
Deborah Kaplan and Marsha Saxton begin their description of the medical model in “Disability Community and Identity: Perceptions of Prenatal Screening” at Our Bodies, Ourselves:
The medical model of disability came about as “modern” medicine began to develop in the 19th Century, along with the enhanced role of the physician in society. Since many disabilities have medical origins, people with disabilities were expected to benefit from coming under the direction of the medical profession. Under this model, the problems that are associated with disability are deemed to reside within the individual. In other words, if the individual is “cured” then these problems will not exist. Society has no underlying responsibility to make a “place” for persons with disabilities, since they live in an outsider role waiting to be cured.
The medical model of disability is still strongly imbued with eugenic thought. In the medical model, disability is Wrongness, Abnormality, Defect, Other. Disability is to be prevented at all costs, cured vigorously, aborted when detected. Disability is sickness, suffering, doom, indignity. Disability is inherently bad; it is not made bad or intensified by societal ignorance and mistreatment, but is an intrinsically negative characteristic. People with disabilities are disempowered, are treated as ciphers without agency, voices stolen by medical-model advocates. The political, social, attitudinal and environmental aspects of disablement are disappeared in the medical model.
They only see doom, indignity, and suffering ahead. No more. The lives of people with disabilities are one-dimensional in their minds, and that dimension is unrelenting tragedy.
“The Only Responsible Medical Choice”?!
And so, abortion is seen not as an option, but as “the only responsible medical choice”. Abortion is seen as a medical imperative, not a decision made by the person hosting the fetus at the time. Kaplan and Saxton continue:
When medical professionals present the diagnosis of a genetic disease condition to the parents, do they also remind parents that this baby would also still come with a full set of other human characteristics? When medical students or genetic counseling students are shown slides of babies or adults with genetic conditions, do we also remind these students that these individuals will carry other human traits such as love and affection, humor and joy? Emphatically not, consistent with the medical model of disability, the diagnostic test reduces the entire set of human characteristics to one– the “flawed, imperfect” part.
Lisa Blumberg describes the outcomes of such consultations, in “Reproductive Technology & the Threat to Diversity” at Ragged Edge Magazine:
A few years later, I was a watching a news story on the merits of a predictive test for spina bifida. A woman explaining why she had gotten an abortion after test results had been positive said, ” I defy any woman, no matter how much she wants a child, to continue a pregnancy after they show her a picture of a deformed baby and tell her that ‘this is going to be yours’.”
Attempts to step outside of the Catholic/Fundamentalist/Forced-birther vs Pro-Choice/Medical Model/Abort-The-Defectives binary framework can result in all sorts of misreadings. Blumberg continues:
A prominent newspaper columnist once described the reactions she got to her veto of her doctor’s age-based recommendation that she have amniocentesis. She chose to forego the option of termination in the unlikely event the fetus was disabled, she said, because of the children she already had. She did not know how she could find the words to explain to them a decision not to have a child who might use a wheelchair or always need special guidance, she said, and still affirm for them her view that differences in people should be accepted.
She pointed out that this was not a snap judgment but something she had reflected upon at length. However, she said, people she thought knew her well dismissed her desire to contemplate older motherhood without prenatal tests with an “Oh, it must be because you’re Catholic.” She is, in fact, pro-choice.
Pro choice. Pro choice means all choices are available. Pro choice means we get to choose. Freely. Supported. Without being judged, or vilified, or stereotyped. I’ll finish this section with one more quote from Blumberg:
What scares me is not the individual decisions people make -although I may disagree with some of these decisions – but the fact that society has latched onto the new reproductive technology as a lead weapon in a simplistic war against “birth defects.” It is chilling to read decisions in wrongful birth and wrongful life suits where judges opine that avoiding the births of disabled children is a social good. It is equally chilling to hear public health analysts debate whether the abortion rate of “defective fetuses” will be high enough to make state-sponsored prenatal programs cost effective and efficacious. The legislature of at least one state (Alabama, in a law first passed in the late 1970s) has declared it to be state policy “to encourage the prevention of birth defects and mental retardation through education, genetic counseling and amniocentesis…”(Section 22-10A-l of the Alabama statutes). […]
I believe that the public discourse that we need has been stalled – even in the disability community – because when people discuss the implication of the new reproductive technology at all, they tend to do so within the framework of their views on abortion. Yet these issues transcend the abortion controversy, even as they cut across both sides of that debate. Somehow, we must begin to think more creatively and learn to meld together different world views.
Choices don’t occur in a vacuum
Imagine for a moment a world like ours, but with one change: that all doctors are enlightened about disability. That they see it as yet another human characteristic, that they are aware of the social model, that they offer truly free and informed choices about prenatal diagnosis and abortion.
There are broader ways in which reproductive choice is undermined. Feminists who are working to balance reformative and revolutionary ideas are constantly repeating the refrain that choices “don’t occur in a vacuum”. Decisions about pregnancy are an exemplar of this principle. We live in a fundamentally ableist world. Even if you strike an informed doctor who offers the options in a non-directive way, everyone brings their own baggage to that consultation. We have been raised to believe that disabled lives are less-than. We have been raised to believe that it’s not ok to be a “burden”, that one of the worst things you can do in life is “expect special treatment”. We live in a world where temporarily-abled people feel quite comfortable going up to people with disabilities and saying “If I were like you, I’d kill myself.”
We live in a world of ignorance and hate, where even the moral model of disability still has substantial cultural traction. Cerrie Burnell
was denied a role on received multiple complaints for appearing on children’s television with one hand, which some claimed was “too scary”. Riam Dean was shoved in a stockroom for violating the “Look Policy” of Abercrombie & Fitch – by having a prosthetic arm. We read books where it’s hipster-hilarious to punish Mr Wickham for his sins by paralysing him in a carriage accident, and to punish Lydia for her sluttery by making her change his soiled linens. We are around service providers who think Gregory House is an instructive case study. We have been brought up with images of the village idiot, the pitiable invalid, the circus freak, the insane murderer, the disfigured outcast, the crippled villain. We have been raised to see people with disabilities as disgusting, repulsive, frightening, and even evil. We have been socialised to see people with disabilities as either impossible to love or desire, or the object of “deviant” fetish.
And we live in a world where mothers of children with disabilities struggle. We live in a world where women with children are disproportionately poor, where some are denied healthcare on the basis of disability, where carers are badly underpaid, where childcare and respite and educational options are constrained. We live in a world where we know that children with disabilities will grow up to deal with all of the negative attitudes that the moral and medical models bring to society.
We live in a world where the massively problematic concept of “dignity” reigns. Dignity is an essentially classist, ableist concept. The etymology of “dignity” is from the Latin word for “worthiness”. Wiktionary expands:
From Middle English dignitee – Old French dignite – Latin dignitas (“worthiness, merit, dignity, grandeur, authority, rank, office”) – dignus (“worthy, appropriate”), probably akin to decus (“honor, esteem”) and decet (“it is fitting”).
In modern English-speaking society, lack of dignity is seen to be inherent in anyone who needs assistance. Anyone who has help with mobility or bodily functions, or who fails to “control” their body’s noise or movements or leakage in societally-acceptable ways, is seen to be leading an “undignified” life. That people with disabilities who need care or help are inherently worth less than other people.
All of these issues come back to ableism. All of these issues need to be fixed.
Conversations in the Blogosphere
In none of the feminist conversations about this episode have I seen a single one of these issues addressed. Not one.
“RH Reality Check” talks about “the doomed life she was carrying”, and a commenter refers to “fetal anomaly babies”.
Kate Harding at Salon talks of “a rare, devastating, potentially fatal illness”, then continues:
— It’s wrong to kill doctors and stuff, but the good news is, if an abortion provider is murdered the day before a woman is scheduled to have an abortion because the fetus was diagnosed with a rare and potentially devastating illness, and you live in a country where there are almost no late-term abortion providers to begin with? That baby will get itself born and be so damned cute everyone will be thrilled and see no point in even thinking about how ill he is, how young he might die, how much care he’ll need, how that care will be paid for, how his single mother will cope with being his constant caregiver, how she’ll earn an income, or how her choice about her own body and life was made irrelevant by a homicidal zealot. […]
[referring here to L&O character Bernard, who talks about how he survived his mother’s attempt to abort him:] Babies born two months prematurely to poor women of color who tried desperately to end their pregnancies do not automatically grow up to be New York’s finest, and never you mind the in-between stuff.
Nowhere in the flurry of femiblogosphere articles about this episode could I find a scrap of evidence that any of the feminists writing on this issue, who are quite rightly furious about L&O’s portrayal of Tiller, have opened up a Wikipedia article about EDS, or have informed themselves about the models of disability which are damaging and dangerous to people with disabilities, or have stopped to think for a second how their one-sided and dehumanising portrayal of disability as “doom”, “suffering” and “devastation” affects us, real live fellow feminists who are right here.
Denial of abortion rights to people who are making an informed, supported decision to terminate a pregnancy is shameful. Also shameful is the failure of society to wholeheartedly support and respect people with disabilities, and the misinformation and disability-hate spewed in the direction of people trying to make difficult decisions about their body and their family. Refusing to recognise or discuss one of these issues because the other is “more important” is just one more example of highly-visible able-bodied feminism embracing the saturation-level ableism of our culture.
It really, really, really sucks that almost the only place we hear the conversation that people with disabilities aren’t necessarily “doomed”, discardable, and dignity-free is from misogynistic forced-birthers. As this episode amply demonstrates, they’re doing it wrong. Why are we letting them have it?
P.S. [I have been diagnosed with hypermobility syndrome and a number of other manifestations of Ehlers Danlos syndrome. So this particular story was rather a smack in the guts for me.]