Law & Order: “Dignity”, Worth, and the Medical Model of Disability

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.

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:

[clips, transcripts and a lot more discussion are below the cut]

Transcript:

[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?

Kevin: No.

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.

Transcript:

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.]

32 responses to “Law & Order: “Dignity”, Worth, and the Medical Model of Disability”

  1. Rosemary

    Very powerful post on a complex and often infuriating issue, thank you.
    .-= Rosemary´s last blog ..Feminism and Disability stuff =-.

  2. Amanda

    I get to the point where I can barely talk to anyone about this issue because it seems like prolife people almost always trivialize pregnancy and make it sound like it’s acceptable to force people to carry a baby, and most prochoice people I talk to trivialize the life of a fetus (as if you have to dehumanize them in order to believe killing them should be a choice people have so they diddle with the semantics ad infinitem) and most especially dehumanize disabled fetuses. I have heard some of the most terrible ableist rhetoric from cookie-cutter prochoicers to the point it hurts too much to keep confronting them. Some even claim disabled fetuses are interchangeable with nondisabled fetuses so that aborting the disabled one is giving the disabled fetus a chance at a nondisabled life (WTF, too much abstraction anyone??). And then prolife people who act like they are in it for disabled people but don’t seem to usually care at all about the subset of disabled women who (like me) could easily die carrying a pregnancy to term. And everyone so caught up in party lines and abstractions that they make it seem like it’s impossible to be prochoice and pro-disabled at the same time. Makes me want to scream.

  3. Naamah

    These are things I had not thought of in exactly this way before, and I thank you for making me confront that. I can tell that I will need to do a lot of thinking on this.

    Reading this, I can see that the idea of an “informed choice” is really most meaningful if one is informed not just about whether or not the fetus in question will be born disabled in some way (which I can see would be good to know so that we can be prepared, the same way you want to be ready to receive your guests at a party), but is informed also about ableism and one’s own prejudices and misconceptions and how that might be affecting one’s choice. That is the kind of atmosphere I would like to create as a pro-choice feminist. I acknowledge that I have often let my own personal issues get in the way of that. I don’t want children, but as a bipolar daughter of a bipolar mother and with an ugly history behind us both, it is VERY hard for me to see anything besides suffering that could be avoided.

    And you know what? I want to live in a world where we don’t need to fear for the happiness of people who are born disabled in any way, just because the world itself creates suffering on account if it’s being shitty to disabled people. Sure, some conditions manifest in some people (like me and my bipolar type II) in ways that would be horrible even with the utmost accomodation. But the suffering inflicted simply by this culture being what it is, that is a pressure none of us should feel. The “utmost accomodation” I am speaking of should be a given that we can rely upon when we make a choice.

    Sorry if I’ve said anything offensive here. If I have, please let me know. This is not something I’ve thought about this way before.

  4. lauredhel

    Amanda: so true. I didn’t even delve into the issue of pregnant/potentially pregnant people with disabilities and the way the “pro-life” movement deals with them/us. Those same people who so fetishise and tokenise the idea of a fetus or child with a disability are completely uninterested in my disability-related issues. I had rare, majorly life-threatening complications with my pregnancy, likely related to collagen issues in retrospect, and if my tubal ligation fails, things might not be good. Yet they want it to be a criminal offence for me to take action to save myself – and I’m betting a good proportion of them wouldn’t hesitate to tell me that my pregnancy complications were God’s wrath for a pregnancy out of “wedlock” (gack, horrible word) in the first place.

    There’s not much temporarily-abled “pro-life” and pro-choice schools of thought agree on; but the subhuman status of people with disabilities is one.

  5. softestbullet

    Oh, thank you! I’ve read so many feminists talking about the “doomed” fetus today… *sigh*
    .-= softestbullet´s last blog ..*uses awesome linguist icon* =-.

  6. Naamah

    Lauredhel: Thank you. I do want to be clear I’m not wanting anyone to be shamed for anything. I’m kind of groping for words here because this isn’t stuff I’ve had to articulate before, so thank you for bearing with me. I think you said what I was trying to say better than I did. Or clarified it.

    If I am understanding your reservations right, no, starting where we are currently at and then trying to change things by pressuring or shaming prospective parents in any way is so not the idea. The idea is to bring society up to a point where a woman making that choice is not surrounded by this constant white noise of “disability = the worst thing ever” and has not been raised with that idea. You can’t get to a better place by guilt-tripping a pregnant woman, whether you are pressuring her to give birth or not give birth. That’s awful, and certainly not what I would want.

    I am probably not expressing myself real well. I’m sorry. I’m on board with you, is what I’m saying, and we obviously need to create major change in how disability is viewed so that the birth of a disabled child is another possibility, not something to always be feared or avoided. When people are dealing with this stuff, I want them to come from a much better place than the one we are in, and I think you are right. We within the pro-choice group need to start having those difficult conversations you talk about in your last paragraph in the original post.

    (And I do want to make clear that I certainly wouldn’t want doctors shaming their patients in any way. Women get enough of that crap from doctors already, period. Dear lord.)

  7. lauren

    Thank you for writing such a well thought-out post about such a complicated issue.

    The idea that “disabled live is not worth living” is so often present in discussions of the right to chose. It is frustrating to see when pro-choice people use ableism to “strengthen” their arguement. And it is simply not necessary. The riht to chose what happens to my own body should be the center of those discussions, not “the right to determine which life is worth living”. People who equal life with disability to bein unable to live at all seem incapable of understanding just what kind of message they are sending to the world.

    The idea the prenatal diagnosis should be used to “avoid disability” is something that I have also come across when discussing the issues surrounding pre-implantation-diagnosis. It seems that, when women try to get pregnant through “artificial” means, there are many people who see no problem in the practice of gene-testing and then implanting only the ones who have no genetic “anomalies”.

    I see the same thought-process in both discussions: that everyone would (and should) want a “normal” child and refuse to have an “abnormal” one.

    The amount of ableism in these arguements is horrible, and often combined with a stunnin lack of logic. During one of the discussion on whether PID might have moral issues, someone told me that they would have prefered being born without being short-sighted. That person seemed incapable of understanding that, if it were possible to screen for neer-sightedness, he would not have been born without it- because there is, as of now, no was to “cure” genetic “anomaliy”, he would have been thrown away in favour of another person without that partticular gene variation.

    And this brings us back to the prevalence of testing during pregnacy. People seem woefully unaware that most testing does not aim to find problems that can be fixed (like, for example, a child with a heart growing outside the body, which might be surgically corrected before birth) but to search for potential “anomaly” just because. And if there actually is one? The mother is expected to either terminate the pregnancy or to do- what, exactly?

    (If my wording here is problematic, please tell me how to improve it. As English is not my first language, I am often unaware of finer details that might lead to me saying something I do not actually want to. I am always happy to improve and greatfull if you help me do that)

  8. DQ

    Cerrie Burnell was denied a role on children’s television for being “too scary”.

    I followed your link for that, and then googled, but all I could find was reports on the same couple of parents complaining and the BBC backing up their choice of presenter and putting up web pages on how to explain to children.

    http://www.telegraph.co.uk/culture/tvandradio/4862527/Disabled-BBC-presenter-Cerrie-Burnell-would-rather-be-blonde-than-have-two-hands.html

    http://news.bbc.co.uk/1/hi/magazine/7906507.stm

    She still had a job, and she’s still on the CBeebies presenters page. So could you include a reference for the role she was denied? Thanks.

  9. Jane

    Good post BUT there is misinformation about EHLERS-DANLOS here.

    There are a minimum (believed to be more)subtypes of Ehlers-Danlos, with the worst being VEDS or the Vascular form that can lead to spontaneous rupture of organs and arteries (I have this. There are also a few types that although annoying and painful, are not life threatening. Many with EDS live completely normal lives, so it is a shocker that some would consider abortion because of this disease. It is believed many dancers (especially ballet) and circus performers have EDS, for example.

    http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome

  10. Anna

    Thank you.

    I’ve been trying so hard to talk about my person reaction to people I respect and admire basically saying, without thinking, that my husband’s life is not worth living. (Don has Marfan’s Syndrome, which is related. That’s why he uses a wheelchair, and why he takes narcotic pain meds.)

    I haven’t been able to express myself at all. Thank you.

  11. Collie

    The thing that stuck out with me as I read this was, how did they know the baby had EDS? The only cases I’ve ever heard of where prenatal testing was done was when multiple family members had EDS. Even then, the test isn’t going to catch all cases.

  12. kaninchenzero

    “If I were like you, I’d kill myself.”

    I get this in a softer form from my wife; she’s got arthritis and tendonitis in her feet. Which I’ve been pointing out that she deserves pain relief for and we already know a good pain doctor and we can find a podiatrist but she… I don’t know. Something keeps her from seeking treatment. Maybe she believes she doesn’t deserve it because it’s not as bad as fibromyalgia. Whatever it is it’s frustrating — she’d be angry with me if I were avoiding treatment.

    Anyway, when she’s in a lot of pain she is wont to say “I don’t know how you live with this all the time.”

    It’s actually easy. I want to live, full stop. (Most of the time.) Everything else follows after.

  13. LeeLee

    I’ve had this conversation a number of times. Several of my friends are mothers of special-needs kids and these women are also ardently pro-choice. The conversations are happening.

    I tend to think that if one is pro-choice, it’s best to not qualify that position AT ALL, because in qualifying, one may say or imply things that one doesn’t mean. I support the right of women to have the autonomy over their own bodies, which means I support the right for a woman to choose to end a pregnancy.

    Of course, in saying that, I may be including women who choose to end a pregnancy because of various medical issues of the fetus. That choice would be heavily influenced by the many things the disabled community talks about daily – inadequate support, health industry issues, etc. I don’t think that’s strictly an abortion issue – but it’s where disability issues and pro-choice issues meet and sometimes collide.

    re: prenatal testing – it can take months to get services lined up and for new parents to learn about the condition their baby will be born with. This is a huge benefit of the prenatal testing, because it gives them a few months’ head start.

    Sometimes when folks talk about “dignity,” what they are really talking about is “autonomy.” And while it’s horrible to say that a profoundly disabled individual is living without “dignity,” it may be correct to say that individual does not have “autonomy.”

    I have Ehlers-Danlos of the hypermoblilty stripe. I’m guessing that the L&O people probably mashed-up some of the characteristics of the exceedingly rare EDS types with some of the features of V-EDS. Yeah, not everyone with EDS requires the kind of care they talk about on the show. But I certainly do not live a “normal” life. I’ll shower today *if* I can get up the stairs. I need to run some errands, but will have to wait until my husband gets home, because I can no longer drive because I can’t turn my head without nearly blacking out from dizziness. But I’m damn flexible, at least until something dislocates.

  14. meloukhia

    I loved this post. So very much. Because one of the most problematic aspects of the pro-choice movement, in my eyes, is the refusal to explore moral and ethical complexities. I understand the desire to paint things in simplistic terms for soundbites, but the denial of personhood to people with disabilities is, well, it’s ableism, and it’s disgusting. And it is so frustrating to encounter vicious pushback whenever one dares to suggest that informed decisions should be a key aspect of reproductive rights and that people with disabilities have a right to exist.

    I was really disappointed by the reaction to this episode in blogland; this is the first analysis of the episode I’ve read that didn’t make me want to scream.

  15. Amanda

    The amount of ableism in these arguements is horrible, and often combined with a stunnin lack of logic. During one of the discussion on whether PID might have moral issues, someone told me that they would have prefered being born without being short-sighted. That person seemed incapable of understanding that, if it were possible to screen for neer-sightedness, he would not have been born without it- because there is, as of now, no was to “cure” genetic “anomaliy”, he would have been thrown away in favour of another person without that partticular gene variation.

    I’ve had conversations like that before, and what I almost always hear in return is something like this:

    “I’m pro-choice, so I have to believe that fetuses and embryos are not persons. Since they are not persons, they are interchangeable. Since they are interchangeable, then choosing a non-disabled one over a disabled one is giving the disabled one a chance to live without disability.”

    And if I try to tell them that this logic simply doesn’t hold up (and that many of their arguments for “non-personhood” are themselves ableist), they respond as if I am questioning the logic of being pro-choice. As if, there’s only one way to think about being pro-choice, and that way depends upon ableism and a vast helping of illogic.

    To me the question isn’t “Is a fetus a person?” or but “Is killing a fetus an option that needs to be open to women in order to give us control over our own bodies?” (And my answer is yes. Otherwise you get scenarios where women are forced to either stay pregnant against their will, die trying to stay pregnant against their will, or die trying to have an abortion (I know women who nearly died trying to abort in secret). And that’s not acceptable. Not to mention that pregnancy and childbirth aren’t totally safe even for non-disabled women, and nobody should be forced to take that risk unless they really want a child.)

    One thing I really don’t get is backwards logic. The sort of logic that says “I want to believe Thing X, so I must believe Thing Y about Thing X in order to believe Thing X.” And that’s when I hear when people say “I am pro-choice, so I must believe fetuses are interchangeable non-persons in order to be pro-choice.” It seems like that’s a really common argument people use, so it’s become synonymous with being pro-choice. And it isn’t.

    (Not to mention that you don’t even have to believe abortions are a good or pleasant thing in order to be pro-choice. You can believe they’re a bad or unpleasant thing, but that outlawing them would lead to worse things.)

    It seems like a lot of people have been taught that everyone must be pro-choice for the same reason, which baffles me. One thing that also disturbs me is the number of people I’ve met who wouldn’t otherwise be pro-choice if it weren’t for the fact that they believed in eugenic abortion of disabled fetuses. And that our lives were so horrible that it would be in our best interests never to have existed at all.

    I remember reading in an article by Dave Hingsburger (in the book “Four Sight”) where he described a woman who had marched for women’s right to choose, and said she would do so again, but who had gone to a disability conference and attempted to tell people in her presentation about how disturbing the upward trend in abortion of fetuses with Down’s syndrome was. And she was shouted down and treated horribly by people who insisted she was infringing on a woman’s right to choose. And I think it was that article where I first saw a quote that ran something like, “Choosing whether is different than choosing who.”

    And when I talk about these things, it unmasks some of the most horrible ableism I’ve ever heard. I’ve heard things like “So you want a woman to be chained to a retard who will never know they exist in the first place?” And people go into all these details about what they think disabled people’s lives are like, all the while dehumanizing us in some of the worst ways I’ve ever heard. If you mention Down’s syndrome, they’ll go out of their way to mention people with the most severe versions, as if having a severe impairment means your life is worth less than someone with a mild impairment. And often they’ll describe “will never be able to do Thing X” scenarios that apply to my life, and then insist they’re not talking about me. Again, makes me want to scream at someone by the end of it.
    .-= Amanda´s last blog ..Stuff I’ve been reading. =-.

  16. The White Lady

    kaninchenzero….thank you for articulating that thought.

    I never figured out before how to address people who questioned my quality of life, but you have given me a simple way to do it! :-)

    Great post, lauredhel. I’m still trying to figure out where I stand with abortion…sometimes, as in these cases, abortion rhetoric slips too close to eugenics for me to be entirely comfortable with it.

  17. Amanda

    And in response to “If I were like you, I’d kill myself.”, I get that all the time in various forms. “I could never live like you.” “You need to understand that not everyone can handle things as well as you can, many people get severely depressed or are even driven to suicide by the kind of restrictions that exist on your life.” “How do you find the will to live?” “Don’t you ever want to die?” And even more disturbing, “I used to work with people like you in an institution. And I’d stand over their beds at night, asking them ‘Why are you alive?’” (That guy wanted sympathy for his “anguish”, too. I ended up backing out of the room and never coming back. I’ve experienced attempted murder by neglect at the hands of people who called me a waste of space in a mental institution, and I have no illusions that people who say things like that never act on them.)

    I don’t understand why so many people are hung up on the idea that somehow just being us is so horrible it must not be worth existing for.
    .-= Amanda´s last blog ..Stuff I’ve been reading. =-.

  18. kaninchenzero

    Amanda: Yup. I get a lot of “If I could make the pain stop [usually by taking it on themselves and why would they want me to live with knowing they had my pain?] I would.” “If I could wave a magic wand and make it go away…” In the past she’d sometimes add autism to the magic wand list, usually when I’d done something socially inept and hurt someone I cared about and was beating myself up for it. We’ve talked a lot about that and why so many of us see agitation for cures as eliminationist and she doesn’t any more. (Note: My wife isn’t an ableist monster, just human. I love her and she’s wonderful and sometimes I’m the one hurting her with words.) So that’s good. But when she did? Ouch ouch ouch ouch ouch.

    I don’t know who I’d be without the conditions that impair me and impelled me to claim a disability identity. If they disappeared I’d be someone else, and the prospect is somewhat terrifying.

  19. LeeLee

    Kaninchenzero – I had to have a similar talk with my husband. He’s a “do-er” and a “fixer.” That’s how he handles situations and that’s the role he plays in his family of origin and also in our home. He also has a substantial military background of the small, well-trained group variety. He can’t “fix” me, but for a few years after my diagnosis, he was a bit overbearing with calling doctors, pharmacies, etc. He felt compelled to do something. It was sweet, but misguided. I finally had to tell him that if he kept the fixing mindset, I would always be broken. That got his attention. I just had to frame it correctly.

  20. cathy

    Look, I definitely do not believe that fetuses are persons, but in no way does that view nessecitate the view that selective abortion of fetuses based on disability (or sex or race) is good. If we work from the premise that all fetuses are of equal value, then it does not follow that one would selectively abort. The value of the disabled fetus is equivalent to the value of the nondisabled fetus (though I view neither as having the value of a person). By suggesting that nondisabled fetuses are superior, one is assigning greater value to some fetuses, thereby asserting that in fact all fetuses are not equally valuable/not valuable. We also must acknowledge that the reason that people see nonperson male fetuses or nondisabled fetuses as being more valuable because we (as a culture) assume that they will create ‘inferior’ people, meaning that women and the disabled are less valuable. So do I think that selective abortion of the disabled or females is good? No. However, I feel that the choice to continue or end a pregnancy is such a fundamental bodily right that people should be allowed to abort even for reasons that I would view as poor ones (such as potential disability of child). The solution to this issue is not to dehumanize women, it is to improve access of pregnant women to information about the actual people who live with these conditions instead of having them be rushed into action by scare tactics from the medical establishment.

  21. The White Lady

    Yes yes yes!

    Kaninchenzero, I too would be someone else if somebody took away my disability. I like being who I am, when I’m left to my own devices. It’s like Leelee said….it’s only when somebody tries to fix me, or compel me to fix myself according to their definition of what fixed is, that I realise that in comparison to everybody else, I’m broken.

  22. Jadey

    I’ve been lurking here for a few weeks (and intend to continue doing so!), but in light of the last couple of comments, I wanted to share a quote that struck a deep chord with my mother and I (both TAB, and working in service positions that are not exclusively oriented to PWD or TAB people), from an article written by Rachel Naomi Remen: “When you help, you see life as weak. When you fix, you see life as broken. When you serve, you see life as whole.”

    There is a link to the full article here. (I have tried to learn more about Dr. Remen, but my apologies if I have overlooked anything in her background or beliefs that is ablist, demeaning, or otherwise inappropriate to this blog.)

    This is an excellent post. The subject of reproductive rights, definitions of personhood, and choice are incredibly complex, with varying intersections of privilege created by the misleading status quo. It is heartening to see more people taking on and talking about the important complications rather than dismissing them as irrelevant or simplistically distorting them.

  23. Tlönista

    I know I keep saying this about posts but this is the BEST POST EVER. Ableism and eugenicist thought are so deeply entrenched in pro-choice feminist rhetoric sometimes I doubt they can ever be disentangled. The right to choose is conflated with the right to choose what sort of people should exist.

    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.

    This this this. This is never centred in mainstream (white TAB cis straight middle-class) feminist discussion, which is largely about the right to abort.

    It’s ironic/infuriating that forced-birthers may not give a shit about the lives of women…unless they’re disabled. And haven’t been born yet.

    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.”

    I am just waiting for some pitying, clueless mfer to read about my life and say, “If I got to be [suicidal] like you, I’d kill myself.”

  24. notthemarimba

    Don’t really have much to add, but dang is this a great post.

  25. lauredhel

    LeeLee:

    “I tend to think that if one is pro-choice, it’s best to not qualify that position AT ALL, because in qualifying, one may say or imply things that one doesn’t mean.”

    Do you see this post as being in this category? (Your “one” construction is difficult to interpret.) Do you think I have said something that I don’t mean here?

    This is not an “I’m pro-choice BUT” post. This is an “I’m pro-choice AND” post. Looking at what choice is and how it is constrained and directed is, or should be, an absolutely essential part of feminism. Without it, all we would have is hard libertarianism, and look how disastrous that would be for women with disabilities.

  26. Amanda

    Regarding dignity/autonomy, usually when I see “dignity” referred to in reference to a disabled person it’s a code-word for “toileting”, and specifically to the idea that disabled people who need help with any aspect of toileting are “without dignity” somehow.
    .-= Amanda´s last blog ..Stuff I’ve been reading. =-.

  27. LeeLee

    lauredhel – Sorry! I wasn’t referring to your position at all.

  28. MomTFH

    Great post. I am happy to say I don’t watch the show and didn’t see this infuriating episode.

    I discussed preimplantation screening in my medical ethics class, and just taught lab & diagnostic testing to a midwifery class.

    One of the issues I made sure did not get ignored in either conversation is the ethical issue with assuming many conditions that can be screened for should be eliminated. In my ethics class, this was after correcting the woefully inadequate professor, who could only say “But if you decide not to transfer an embryo, that’s killing babies!!!”
    .-= MomTFH´s last blog ..Moving during labor =-.

  29. kitrona

    Wow. I am… gobsmacked, I think is the word. Lots to think about. Thanks for the push to do so.

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