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Lauredhel is an Australian woman and mother with a disability. She blogs about disability and accessibility, social and reproductive justice, gender, freedom from violence, the uses and misuses of language, medical science, otters, gardening, and cooking.

This author has written 1598 posts for Hoyden About Town. Read more about Lauredhel »

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

  1. mimbles

    Brilliant post Lauredhel, I don’t really have anything to add other than to say thank you and to acknowledge the work you’ve put into it – it’s appreciated.

  2. Quixotess

    Ooh I have been looking forward to this post and it is every bit as awesome as I imagined it would be. Thanks so much.

  3. stargazer

    to echo what’s been said, thank you for writing this. brilliant piece of work.

  4. tigtog

    Well said, all of it.

  5. Lady Grey

    Really awesome post :-)

  6. WildlyParenthetical

    Wow. That’s pretty much all I can say right now. Spectacular work, Lauredhel.

    ‘Wrongful life’ has to be one of the most troubling developments in case law in recent memory.

    It’s also interesting in this situation to track the discourses used to condemn those who select for disability; the contrast between the approval and even enforcement of the termination of fetuses diagnosed with some kind of disability (there are OBGYNs who refuse to treat women who won’t terminate a fetus) and the absolute condemnation of those who use prenatal testing to select for disabilities demonstrates precisely how deep the ableism goes.

  7. amandaw

    Spectacular indeed. Thank you so much for this post.

  8. Miriam Heddy

    I got pregnant with my third child at 38 years old–old enough that I had prenatal tests that suggested the fetus might have Down’s Syndrome. I really waffled over whether to have amnio because of the much-debated risks to the fetus.

    As I read up on it, I discovered that most people abort fetuses with Down’s–and the geneticists’ in-house literature and discussion of the possibility was still stuck in the medical model that suggested that either the fetus had Down’s or it was a baby!

    I knew that, if my fetus had Down’s Syndrome, I was going to have to do a lot of work to educate family and friends, as well as myself.

    I ended up doing the amnio, as I found solid evidence that the risks were actually low relative to the risks to the fetus of my being anxious/depressed for the last part of my pregnancy, and the amnio doctor had very good stats. I decided I felt I could be a better, less anxious fetus-host if I knew for certain one way or another what was coming, though I also knew that, childbirth being what it was, I was still going to be in for surprises.

    As it turned out, my third didn’t have Down’s after all, though a later ultrasound showed he had a redundant set of branches coming from one kidney and a small problem with his bladder where there was a bubble of tissue there causing reflux when his kidney emptied into it on one side. He needed surgery once he was born to fix that to protect his kidney from damage.

    As I watched the episode, I couldn’t help but remember what I went through–and the way I discovered, first-hand, the way that ableism informs discussions about abortion and childbirth.

    And, like you, I was baffled and annoyed by the response to the episode in the feminist blogosphere.

  9. OlderThanDirt

    I was incensed by this episode because it seemed to give legitimacy to the idea that there really is a justification defense to the murder of an abortion provider but that legal details prevent it from working out currently. However, good people will continue to try to work out those legal details so maybe someday soon… It was particularly enraging because this is the defense that the e-Bay auction for Tiller’s murderer was supposed to support. I was so caught up in the idea of a prime-time recruiting video for domestic terrorists and murdering vigilantes that while I recognized that what they were saying about the medical situation was bogus, I didn’t think through the implications.

    Thank you for reminding me that this was a horror for other reasons. I’m very sorry that I needed reminding.

  10. Deborah

    I think there’s an analogy with female foeticide in some societies. As a feminist, I am pro-choice, so I wouldn’t comdemn the abortion itself per se. The thing that is morally wrong with female foeticide is the wider society within which it is practiced, which sees girls and women as being less valuable than boys and men. Feminists, including me, can perceive that particular problem very easily. So why do [some] feminists struggle to perceive the similar problem with respect to aborting fetuses that are thought to have disabilities.

    Many thanks for the post, Lauredhel. I’m sorry that my comment is a bit tardy; I wanted to think about it before bursting into print.

  11. Mindy

    The mis-information so casually bandied about by this TV show floored me. From both sides “this child will be born with tissue paper skin” or not maybe the writers should at least get the syndrome right, and “babies are viable from 22 weeks” which neatly glosses over the enormous struggle a baby born that prematurely faces just staying alive.

  12. Aliasaviva

    *Trigger warning, I think maybe*
    Thank you for this post. My mum is deaf from rubella, as are some of her friends (it was a big year for rubella). At uni a fellow student remarked that in her country abortion was illegal “except of course in cases like rubella”. I was just floored.

    I am pro-choice and am glad that abortion is an option. If I had rubella during a pregnancy I would at least consider abortion though I think I’d be most unlikely to choose it. I think my mother would have at least considered it too (she certainly worried about rubella, having kids before the vaccine was available and not realising yet that she had retained immunity since she was in-utero). I respect women’s rights to make choices to abort and recognise they can be the hardest decisions to make in a life. Also that rubella causes other things than deafness.

    But my heart went straight to those great deaf and Deaf women* I know and the “of course” just threw me.

    I am interested to read more of the notion of dignity or lack of it in disability. We have had some heated disagreements over the concept in our extended family where someone’s death was seen by another family member as a blessing – because he would not himself have tolerated the loss of ‘dignity’ she was reaching – when it seemed clear to others of us that she had been greedy (not meant in a bad way) for every remaining day.

    I feel in my marriage that the concept of dignity is something we need to keep talking over – as if one of us is ever making a choice over respirators being turned off or similar, that we need to remember that the choice needs to reflect our spouse’s values rather than our own.

    * I’m not aware of deafness from rubella or other outcomes from in-utero rubella infection affecting women more than men – but I happen to know more women than men, including some women who I admire greatly.

  13. su

    Thank you for this wonderful post Lauredhel. Like Allsaviva, I am especially interested in your analysis of the use of the word dignity in ableist discourse. My feeling is that “lack of dignity” is frequently misapplied to the object of one’s’ discomfort. Instead of owning that discomfort it is projected onto the person who has the disability. One of the things that comes up in research is that parents and carers frequently overestimate the suffering of their children with disabilities. This to me is one of the reasons it is so important that the voices of people with disabilities are heard and promoted ahead of those who occupy the caring role.

  14. NTE

    I was so angered by the first few minutes of this episode that I couldn’t even watch the rest of it, but I’m so glad you wrote such a powerful post about it: This is the perspective I was looking for in so many of the other analysis I read, and it was nowhere to be found. Thank you.

  15. Politicalguineapig

    Yeesh, I can’t believe people are still watching that sh*t. It’s been pretty widely acknowledged that it’s like the Fox News of crime drama. And CSI’s way better anyway.

  16. amandaw

    FFS. This isn’t about who’s going to win an Emmy. It’s about attitudes woven deeply into the fabric of our society, covering the entire breadth of it, with very serious ramifications for the people at issue. It’s insulting every time someone tries to point out problematic history and societal trends and someone always shows up to say “Well why do you watch it then?”

    It’s not about being personally entertained. It’s about attitudes which have real results in people’s lives.

  17. Politicalguineapig

    I know it’s not about being entertained. But the fact that it’s been losing ratings shows, hopefully, that the attitudes of people who share this viewpoint have shifted.
    Mindy: yep. Viable does not neccessarily equal healthy. My mom’s a nurse, so I know those kids tend to do okay once they’re past the sticky bit, but I can only imagine how hard it is on them and the parents.

    I think the reason that the femisphere is not talking about this is because of the idea that caregivers are overwhelmingly going to be female. So the set-up is: women ought to be earning money vs. taking care of a disabled child. And feminism is supposed to support women’s independence.

  18. Mindy

    @politicalguinea pig – my point wasn’t that viable doesn’t equal healthy, as babies as premature as 22 weeks are usually the result of pregnancy complications of much loved and wanted children and I think most parents just want their child to survive. My point was that the struggle for life at such an early age is incredibly difficult on the baby and that this was glossed over by the program.

  19. Politicalguineapig

    Mindy: It wasn’t clear, but I think I was trying to agree with you on that point. The anti-choice brigade really does gloss over those challenges, even though a few of them probably had premature babies. (Actually, I know one who was a premature baby back in the bad old days.)
    Lauredhel: Women with disabilities certainly are women, and you’re probably right about the reason for the silence of the blogosphere. I was trying to suggest another argument, but on farther reflection, Occam’s Razor should be applied.

  20. su

    I think you are partly right about the difficulty feminism has with adressing its ableism. I think that the struggle to escape the narrowly defined gender role has been accompanied by a deep ambivalence toward the labour of care since that labour has always been undervalued*. The problem though is with the status and valuation of that role, not with the role itself or with women performing it. If the labour was valued at its actual worth, gender parity would follow, but of course the subordination of women was partly prosecuted through the devaluation of all of their labour and that situation remains for all of women’s labour but particularly in the area of care.

    Who is missing from what I have just said? Children, people with disabilities, people who are sick or otherwise incapacitated. In treating them as the object of undervalued labour we lose sight of their personhood and their dependency exaggerates this, the boundaries between the carer and the cared for become dangerously blurred to the point of invisibility for the dependent person. Also the exercise of patriarchal ‘power over’ can become particularly virulent in these relationships. As well as advancing the rights and freedom of people with disabilities, I think that Feminism that is accutely conscious of issues around disability, like Maternal Feminism, occupies a critical area of redefining interpersonal relationships. Critical because the hierarchical, “power over” nature of those relationships is at the root of so much personal suffering, institutional corruption and environmental degradation. Bit of a sweeping statement but I think it is true.

    *Sometimes people argue that motherhood for eg is actually idealised rather than devalued but it is both/and. In fact it is pretty interesting how the idealisation of an abstract quality seems to go hand in hand with oppression of the people who embody that ideal. I am not merely thinking of mothers but of people with disabilities who so frequently are offered up in the discourse as object lessons to the ablebodied for their “bravery”. It is perhaps similar to the portrayal of certain people of other cultures as mystical figures teaching the white folk. It is the reverse side of the same ableist or racist or sexist coin, not as confronting as for eg Glen Hoddle saying disability is a punishment for sin or the demonisation of black people as violent and criminal or the degraded discourse around single mothers, but that idealisation is as much a part of the oppression as more prejudicial attitudes.

  21. su

    Sorry Lauredhel, I must have dropped part of my email address again in my previous comment.

  22. oldfeminist

    Great post, Lauredhel.

    I’m no longer shocked, but always dismayed, at how anti-choice some supposed pro-choice people can be, because they consider abortion in terms of policy. They are in favor of abortion because they are in favor of:

    Abortions for poor women whose children will be a drain on the economy. Abortions for women who are in college and who will ruin their educations. Abortions for women who are carrying “imperfect” fetuses.

    They confuse reasons a woman may choose to have an abortion for reasons women *should* have an abortion, in their opinion.

    YOUR OPINION DOESN’T COUNT. YOU’RE NOT THE ONE WHO’S PREGNANT. SHUT THE FUCK UP ALREADY.
    .-= oldfeminist´s last blog ..Law & Order Abortion Episode =-.

  23. Old Feminist

    Law …

    I finally got around to seeing the Law…

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