As a disabled feminist, I’m often asked about my views on medical procedures like pre-natal screening and preimplantation genetic diagnosis, or PGD (where IVF embryos are screened for genetic characteristics).

True story: a kid on a tram once asked Stella if she is a fairy. We think she's much more magical than that

Tests for some conditions, such as Down Syndrome, have become par for the course in recent years, and the list of conditions routinely screened for is growing all the time.

Most people accept that the purpose of such procedures and techniques is to identify and eliminate genetic conditions by terminating foetuses affected by them or, in the case of PGD, select embryos that are unaffected by the conditions for implantation and intended pregnancy.

Let me say upfront that as a feminist, I am pro-choice. I believe that women should have the right not to bear children they feel unable to parent, without qualification. But as a woman with a genetic condition, I can’t pretend that conversations about screening for disability aren’t uncomfortable.

Screening foetuses and embryos for genetic conditions sends an implicit message that the lives of those of us living with the conditions are simply not worth as much; that our lives are of lesser value. Nonetheless, I’m frequently called on to have these uncomfortable conversations.

A few years ago I was approached by a nervous looking woman on a tram on my way home from work. “Excuse me,” she said. “Do you have Osteogenesis Imperfecta?” With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it’s because they know someone else with it. So I was surprised by her next line.

“I was pregnant with a baby with OI and I had a termination.” I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn’t quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, “I made the right decision.” Then she got off the tram.

I thought about this woman for days. Indeed, I’ve thought about her many times in the years since we spoke. As challenging as I found my interaction with her, I have no doubt that she was much more confronted by our meeting.

I’m confident that the picture she’d had of a person with OI didn’t look like me. It didn’t look like a young professional woman on a commute home from work. I strongly suspect it looked much more like the ones I’ve seen in medical textbooks from the 1940s.

Despite knowing a number of really fantastic people with OI who lead full and productive lives myself, I bet this woman hadn’t been introduced to any of them. Her view of the condition was more likely shaped by what she’d been told by medical professionals and, perhaps more worryingly, the internet.

And herein lies the problem. What a doctor, even one who specialises in my condition, will tell you about my life will paint a vastly different picture to the one I’ll give you. The information given to families is generally given by medical professionals who may know the pathology of certain conditions inside and out, but it doesn’t mean they know what it’s like to live with these conditions, or what it’s like for our families.

Contrary to many assumptions made about lives like mine, I do not suffer. Even all the fractures and surgeries I had in childhood, and those that occasionally still occur in adulthood, I don’t consider to be “suffering”. I just consider them a part of my life.

And those hypothetical questions that people are so fond of: “If you could have your life over…?” “If you could take a magic pill…?” No. Emphatically, no. While having OI is undeniably not all beer and skittles, I believe that my life has been greatly enriched by it. All members of my family, my parents and siblings, have said the same thing repeatedly throughout my life. I’ve got no reason to suspect they’re lying.

That’s why conversations about genetic screening that centre on “quality of life” are so problematic. Quality of life is a very subjective thing, and it simply can’t be predicted by genetic code. Indeed, the things that cause most difficulty in my life are not central to my genetic condition at all. They’re things like lack of access, discrimination and negative attitudes towards disabled people. These are things we can change, and indeed, they are changing.

While I support the rights of parents to choose when, how and who they parent, it’s vital to recognise that these choices are not made in a vacuum. Many factors entirely unrelated to genetics contribute to our lives. If people are going to have these choices, the context in which we make them must also be thoroughly considered.

If parents are going to be given information about genetic conditions, they must also be given information about the lives of those who live with them. Because we are all more than the sum of our DNA.

Stella Young is one of the guests on SBS’s Insight, 8.30pm tonight on SBS ONE. Follow the conversation on twitter using the hashtag #insightsbs

Comments on this post close at 8pm AEST, just in time to make a nice cup of tea and watch Insight

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    • Uncomfortable says:

      09:27am | 09/10/12

      ‘That’s why conversations about genetic screening that centre on “quality of life” are so problematic’

      Yes, but whos quality of life? I’d imagine the parents/family quality of life would decline (even if the family tells you different every day).

    • Michelle says:

      10:01am | 09/10/12

      Decline could be one word - different is another,  families may be enriched in other ways.
      The argument could be used that poorer families - don’t get the holidays and toys that more affluent families are able to give their children, however the experiences that families make with what they have can be more enriching and rewarding - the same can be used for families of children with needs.

    • centurion48 says:

      09:28am | 09/10/12

      @Stella: Your column might just be the reason I watch Insight tonight. It was beautifully written.
      I read Julian Savulescu’s piece before I read yours and was dismayed that the early comments to his article were the usual infantile ramblings by the usual suspects, when I was hoping for a serious discussion about ethics.
      Perhaps Punch is not the forum for adult discussions about such issues.

    • martin english says:

      04:06pm | 09/10/12

      heh smile it’s not punch, it’s the internet.

      Seriously, though, my nephew, now 22, has been very badly physically disabled since birth. Sometimes, I’d think about what my sister has been through, and I would wish he had died at birth. When I think about watching the wrestling or the footy with him or arguing with him about his taste in music, I am so glad he didn’t. smile

    • Choice says:

      09:44am | 09/10/12

      >>>If parents are going to be given information about genetic conditions, they must also be given information about the lives of those who live with them. Because we are all more than the sum of our DNA.<<<<
      Absolutely!
      As someone with a DNA gene mutation that has caused me breast and ovarian cancer and those plus a multitude of other cancers in most of my family (male and female),  and I have given a 50-50% chance of handing down to my children,  I don’t for a moment think that any decision on genetic screening should be made without full knowledge and understanding of both the implications of what is being tested for, what the likely outcome of the testing and any subsequent manifestations of the gene malformations.
      To re-use a part of Stella’s quote – having a lot of my family die before seeing their own children grow up and/ or reach old age is not all beer and skittles – but we all agree that to have lived and loved is better than not living at all.
      I am pro choice for women and their partners who have to make the choices about their unborn child – but as Stella states – the decision needs to be made with ALL the relevant information.
      My cancers are now in remission and as I caught them early, I have a good chance of living for many years to come. Personally, I’m glad that my parents chose to have children, and I’m glad that I chose to have children.

    • scott says:

      10:28am | 09/10/12

      @ Choice

      Are you seriously comparing your to cancer to that of someone being born with a crippling disability?

    • Choice says:

      10:56am | 09/10/12

      @Scott - NO I am not comparing my cancer to to that of someone born with a crippling disability.  I am not at all attempting to get into a “my genes are worse that your genes” argument and I apologise to Stella, it that is how my comment came across.
      I was agreeing with the article that Stella wrote and used my personal family history to explain how I could have at least some empathy with a family that has to make a choice to test for/make a decision base on genetic testing - whether it be for rampant cancer, Downs syndrome, OI, Cystic Fibrosis or any other genetic abnormality.

      Respectfully - I am comparing the genetic screening process that occurs for both and the thought process that all parents need to undertake.

    • Kika says:

      11:55am | 09/10/12

      You’ve hit the nail on the head with this one

      “I am pro choice for women and their partners who have to make the choices about their unborn child – but as Stella states – the decision needs to be made with ALL the relevant information”

      Women aren’t given ALL relevant information about terminations regardless. They often turn up at the docs, confirm they are pregnant and if this is bad news rather than the wonderful news we all expect a pregnancy brings often they’ve been given the referral to the clinic before they have all the information they have regarding the pros and cons of keeping or terminating their child.

      Knowledge is the key and the medical system as it is now seems to push women through without much care to their circumstances, lives, reality. It’s sad.

    • brisbane says:

      12:21pm | 09/10/12

      Scott are you serious suggesting I should think you are capable of some rational thought.

    • brisbane says:

      12:22pm | 09/10/12

      Scott are you serious suggesting I should think you are capable of some rational thought.

    • Bertrand says:

      09:50am | 09/10/12

      Thank you for this article. My closest friend since early childhood was born with a severe genetic disability that required acute 24 hour care. Mentally, he was one of the sharpest people I’ve ever known, but he was also 100% physically incapacitated. Looking at him without knowing him you would have thought his quality of life would be terrible, but in fact the opposite was true.

      Unfortunately those with his type of disability die young and he never made it to his 30th birthday. The lives of his friends and family were undoubtedly richer for having known him and my experience growing up with a severely disabled best friend means I could never contemplate making the decision with my wife to abort her pregnancy if the screening showed the baby would be disabled.

      That being said, I can understand why people do make that decision. The prospect of having a profoundly disabled child would seem daunting and you would naturally worry that the child would be condemned to a life of misery. If more people like you share their stories, hopefully people will see that people with disabilities can not only leave fulfilling lives, but can in fact bring gifts and abilities that far outweigh any problems associated with their disability.

    • subotic says:

      10:05am | 09/10/12

      As a frequent MRE comment provocateur, I’m often never asked about my views on medical procedures like pre-natal screening and preimplantation genetic diagnosis, or PGD (where IVF embryos are screened for genetic characteristics).

      So, as long as someone brings alcohol to the baby shower, it’s all good…

    • chouse says:

      10:17am | 09/10/12

      I’m really glad i read this…. its changed the way i think about genetic screening and how i think i would react if i found out i was having a baby with a disability. thanks!

    • derts says:

      10:18am | 09/10/12

      To distil this argument down to the core ignores reality; nature throws out millions of variations with each embryo, some which are advantageous for survival, some which are not.

      Given a choice, it is rational to choose those which are advantageous for your offspring.  After all, when one selects a mate for good looks, intelligence, etc, you are doing so because you are hard wired to go for attributes which are better for your offspring.

      So - whilst I am glad that individuals like the author - have a good life, it is a rejection of reality to claim that all individuals are equal.  We are NOT more than our DNA.  The ability of the author to write such a well constructed piece is largely down to her DNA which has not damaged her ability to think/wordcraft.

      Screening for negative DNA (not BAD, just negative to the individual or society) is the next logical step in our evolution.  I doubt it will happen for a hundred years though, as people seem to misunderstand reality…..

    • Andrew says:

      10:24am | 09/10/12

      Keep on writing Stella - you are a tonic in this utilitarian era.

      A close family member and his partner got pregnant with a person diagnosed in the womb with Downs at about 13 weeks gestation - she was terminated within weeks of diagnosis.

      The peadiatrician with whom they consulted before ending the life of the unborn person said they would be “throwing their lives away” if they proceeded with the pregnancy.

      One less problem for the medical field to deal with ...

    • scott says:

      10:50am | 09/10/12

      Is that a bad thing though?  Personally, I am not equipped to handle caring for someone with a disability, and would have done the exact same thing if I were in your family member’s position.

    • Sonja Couroupis says:

      05:26pm | 22/10/12

      Agree… I wonder what parents would say if our medical world encouraged parents by describing the joy their child would bring them. What a sad world that aborts 90% of these awesome people… how is that not discrimination?! Stella, I watched Insight and thought you summed it up so well. I also loved that you asked how the couple with the severely disabled child would have faired if given the support they needed. This also goes for women (and men) who believe they are unable or ill prepared to care for a child (as i once thought)... Once they hold that divine little person, those fears disappear. It is amazing how women and couples find the strength when it is needed. Power to ya Stella! xo

    • scott says:

      10:30am | 09/10/12

      @ Stella

      Do you catch the train at Hawthorn?  I am pretty sure I have seen you motoring about in your wheelchair

    • Mack says:

      10:31am | 09/10/12

      Quality of life is certainly a very subjective thing, and you can bet there will be more terminations in this and the next generation of selfish Gen Ys and whatever the next ‘Gen’ is. Disability doesn’t fit very well into their ‘it’s all about me’ mentality.

    • Colin says:

      11:31am | 09/10/12

      @Mack 10:31am | 09/10/12

      Are you serious..?

      Who, on Earth, would WANT to have a disabled child to look after for the rest of their -and your - life?!? That’s not selfishness; it’s about not wasting TWO lives..!

    • Tim the Toolman says:

      11:58am | 09/10/12

      “Disability doesn’t fit very well into their ‘it’s all about me’ mentality.”

      I suggest you apply for a writing position for a major media outlet.  Your ability to turn a very complex and interesting issue into a bland “Hur hur…Gen Y suck” comment, is impressive.

    • Mack says:

      12:02pm | 09/10/12

      Ah Colin, I rest my case…..

    • Peter Scott says:

      12:17pm | 09/10/12

      @Mack

      If you want to be a martyr and dedicate your whole life looking after a disabled child which I assume you would give birth to despite the existence of those screening tests then go ahead and indulge in your selfish choice, but don’t you dare criticize the rest of us who think rationally

    • Colin says:

      12:30pm | 09/10/12

      @ Mack 12:02pm | 09/10/12

      “Ah Colin, I rest my case…..”

      What case..? You show that you would happily lumber yourself - and your disabled progeny - with a difficult and torturous life because - somehow - it is the “Noble” and “Right” thing to do and shows that you are altruistic and unselfish..?

      All it shows is that you would happily waste TWO lives…how can you possibly justify wanting otherwise as selfish when - really - it is just plain common sense..?

    • ianc says:

      01:24pm | 09/10/12

      Colin I’m not sure if you are very naive or very young or perhaps just a fool. Many couples apply to adopt babies with a disability. So don’t imagine everyone shares your simplistic common sense. There are thinking people in this world and you don’t belong.

    • Colin says:

      01:41pm | 09/10/12

      @ianc 01:24pm | 09/10/12

      “Colin I’m not sure if you are very naive or very young or perhaps just a fool. Many couples apply to adopt babies with a disability…”

      Lots of people take drugs or eat blood sausage too…Come to think of it, lots of people believe in a Sky Fairy, like to smoke cigarettes and also gamble, none of which makes any difference; your Argumentum ad Populum stance just doesn’t hold water. If people are silly enough to waste their lives, that’s their choice. But don’t go calling me out as wrong if I don’t choose to do so…

    • Louise says:

      05:34pm | 09/10/12

      @ Colin, what would be your position then if by chance your child’s disability was an acquired one post birth?  Would you ‘waste’ your life caring for them, or would you throw them onto the scrap heap for someone else to care for as you deem yourself incapable of doing so?

    • ianc says:

      09:38am | 10/10/12

      Colin I did’nt call you wrong I called you a fool..You asked the question “Who, on Earth, would WANT to have a disabled child to look after..”. I responded that many couples apply to adopt a child with a disability. Only the most misinformed would call this Argumentum ad Populum. And only the most desperately misinformed would consider that blood sausage, gambling, smoking and sky fairies have any relevancy in this debate.

    • teresita1897 says:

      05:03pm | 16/10/12

      @ Colin - I sincerely hope that nothing will ever happen to you or your loved ones that would render you permanently disabled… And if, God forbid, something like this should happen, I hope that those around you are a lot more generous in their self-giving than you are.

    • Pattem says:

      10:46am | 09/10/12

      @Stella

      I am reminded of the tagline for the movie Gattaca: 

      There is no gene for the Human Spirit.

    • Tim the Toolman says:

      12:13pm | 09/10/12

      “There is no gene for the Human Spirit.”

      Not one, gene, no.  There’s a pile of them and how they are expressed goes toward the way a person reacts.  Unless, of course, we are going down the track of assuming people with depression are just weak and not applying enough willpower, or that people with tumors on their brains who turn violent just weren’t trying hard enough.

      It’s more complicated that this, as environment can affect us at a fundamental level, but, that’s the gist of it.  There’s no magic spirit, just environment and genes.

    • Scotchfinger says:

      01:22pm | 09/10/12

      @Tim the Toolman, what about someone who finds happiness from belief in a ‘magic spirit’? Will you tell them they have no right to be happy as it is a state of mind based on a false premiss? Like being happy from the pursuit of wealth or sex?

    • Tim the Toolman says:

      02:05pm | 09/10/12

      “Will you tell them they have no right to be happy as it is a state of mind based on a false premiss?”

      They have the right to do whatever they wish.  I have the right to point out why they are wrong, however.  They may continue to hold the view despite all evidence to the contrary, and that’s also their prerogative.  That’s not generally someone I would bother conversing with on such topics, however, unless they are going to bring new and relevant evidence/ideas to the discussion. 

      How much harm do you think has been born of belief in a magic spirit, that lives after we die?  I personally think that it is a short term trade for happiness that allows for the acceptance of ongoing suffering.  Why bother making things better here, when there’s something better when you die?  Just put up with it and know that there’s something better for you after this misery.

      So…to answer your question with another question…is it morally acceptable to ignore the propagation of a belief that allows for the perpetuation of real suffering in society for short term happiness of the individuals?

    • Scotchfinger says:

      02:44pm | 09/10/12

      faith does not look for empirical evidence, indeed faith by definition finds such evidence irrelevant. That’s why it is called ‘faith’; only when a person accepts a concept on its own merits, despite knowledge of alternative concepts, is it true faith. For instance, brainwashing or indoctrination has nothing to do with faith. This is why you can’t convince a Christian that Christ never turned water into wine, despite reasonably pointing out that such a thing could not happen.

    • Tim the Toolman says:

      02:57pm | 09/10/12

      “This is why you can’t convince a Christian that Christ never turned water into wine”

      Ergo, they are disconnected from reality and are unwilling to change.  That is not an admirable or desirable quality.  Further, a quality that actively causes harm to humanity and is unwilling to change, is particularly bad and should be opposed whenever possible, should one have any interest in the long term well-being of humanity rather than just the short term happiness of individuals.

    • Scotchfinger says:

      03:13pm | 09/10/12

      I see. So you admit that happiness based on religious faith has no right to exist (‘should be opposed whenever possible’)  in a secular society. Hmm, what other aspects of culture would you like to see excised from civilisation? Aboriginal rituals? Buddhist temples? Funerals - why not just chuck bodies into a hole, they are dead after all? Pretty grim view of humanity you have there.

    • Tim the Toolman says:

      03:30pm | 09/10/12

      “Pretty grim view of humanity you have there.”

      On the contrary, if I had a grim view of humanity, I would happily encourage people to believe whatever they wished, regardless of the rather predictable harm that would ensue. 

      I simply contend that there is a better path for humanity if it exorcises (pun noted) fanciful beliefs.  I would also argue that a grim view of humanity is that it is too fragile to face reality without inventing stories to help it along.  Not just religious faith, either, but faith in anything that lacks evidence.  For example, homeopathy etc…which can cause harm for the short term happiness of an individual.

    • Scotchfinger says:

      04:49pm | 09/10/12

      well Tim smile unfortunately for you, the scientifically validated society you envision is nowhere in sight. Nice that you have such faith in the progress in science, that causes no suffering, is regulated by impartial (non-ethical - ethics are subjective) interests, can describe the full breadth of human emotion and feeling, and proceeds only with caution where errors can be dangerous. I’ll leave you with your Bertrand Russell omnibus collection.

    • Tim the Toolman says:

      05:50pm | 09/10/12

      Alas, you are quite correct, Scotch.  As always, thank you for the discussion smile

    • Scotchfinger says:

      06:33pm | 09/10/12

      likewise, Tim. Always enjoy a discussion with a man of learning, who likes a bit of a spar he he.

      PS actually I share many of your misgivings about religious indoctrination and blind, unreasoning dogma. However I also believe faith can add a dimension to the human spirit, without actually being all that religious myself.

    • Sickemrex says:

      06:54pm | 09/10/12

      More Tim! More Tim! More Tim!

    • John says:

      11:14am | 09/10/12

      Cancer is most likely caused by the food and environment people live in. Dairy products and meat is suspected of causing cancer in the western population. The entire gene’s thing is just a probability of you getting cancer with the crappy western diet. The reason why cancer run’s in the family is because they are disciplined to eat the same food.

    • Loosy says:

      12:38pm | 09/10/12

      John,

      ICB on your comment on genes acting just as a probability.  My paternal aunt died young of breast cancer (age 40 in the 1980’s) and her two daughters inherited the BRCA gene mutation (the gene that predisposes someone to breast and ovarian cancer) from both parents (yes, males carry it too).  Both daughters, now in their mid 30’s have breast cancer and one also has ovarian cancer on top of breast cancer.  Both girls live an active and healthy lives (moreso than their parents generation, fit, eat well etc) so the cancer likely wasn’t caused by lifestyle factors (I say likely because no one knows what other triggers are with the exception of genetics in this case).

      Thankfully, through genetic testing, my side of the family have not inherited this from my father.

      Whilst my example is probably an extreme case and you may have a point in some instances but you simply cannot extrapolate your “theory” to all cases especially with complex diseases like cancer.

    • Choice says:

      01:12pm | 09/10/12

      @John.
      Not correct.
      Not all cancer is cause by food and environment.
      Amongst others, there are gene mutations that cause an increase risk of Breast and Ovarian cancers (currently identified is BRCA1 and BRCA2 and a couple of others).  These have been identified through scientific analysis of the genes of families that have an increased risk of cancer.  This gene has been found all over the world not just the west, and can be traced back thousands of generations, so the comment about crappy western diet is entirely wrong.
      You may be slightly correct about some increase in some families risk of cancer being their diet - as obesity and alcohol are known to slightly increase the occurrence of cancers.  BUT not sure about your comment on dairy and meat being the cause - I dont have the scientific knowledge to refute or agree with that.

    • Phillb says:

      11:16am | 09/10/12

      I have to disagree.  We had both our children screened for genetic disorders.  Would we have terminated them if the tests had come back positive?  No way.  They were our children. 
      We had the tests done to prepare ourselves for anything that may pop up.  We knew it was going to be hard enough being parents and if there was anything above the ordinary we wanted to do our homework and prepare for it.
      Most people I know had the tests for the same reason.  I can’t speak for everyone but me, my wife and the friends we have spoken to do not fit the category you tried to put us in.

    • Tim the Toolman says:

      12:10pm | 09/10/12

      “Most people I know had the tests for the same reason. “

      I would have absolutely no issue aborting based on screening.  There is no rational reason for bringing a life into the world, with no say in the matter, disabled, when an alternative available.

    • Colin says:

      11:21am | 09/10/12

      I hate to be the one who states the obvious here, BUT; if a foetus is terminated, it does not (obviously) grow into an adult and - therefore - does not become a “Person”, per se. Ergo, it is a moot point to say that you are terminating some person who has a great life or a family that is “Enriched” by their presence, because that is only a POSSIBILITY for that particular offspring. Fact is, termination gets rid of a problem, keeps the gene pool unsullied, and the human race all that much better off.

    • Levi of Bris says:

      11:47am | 09/10/12

      Too bad you weren’t terminated Colin. I find it unfortunate that the human gene pool may potentially be sullied by offspring who could carry your callous and robotic approach to human life.

      I take it you wouldn’t be upset in the slightest if your missus had a miscarriage? Afterall, it wasn’t a person, and it was defective, so you and your missus wouldn’t be sad at all would you?

    • Colin says:

      12:05pm | 09/10/12

      @Levi of Bris 11:47am | 09/10/12

      Now, see, that’s the problem Levi; you act as if miscarriage was some sort of thing limited to the human race and not something of the greeter Animal Kingdom of which we are part…And, as a result, you - and many others - attach larger meaning via social constructs.

      So, yes, it WASN’T a person, it WAS probably defective and you move on. Sure, you are sad that you tried and failed, but you take heart in the fact that the next one is viable. But that does not alter the fact that it wasn’t a person but just a zygote or a gamete; just a collection of cells…

    • Tim the Toolman says:

      12:05pm | 09/10/12

      Well, Levi, you certainly improved the tone of the conversation there.  Wishing someone had never been born.  Nice.

      FWIW, though I would have chosen different language, his essential points are logically sound.

    • K2 says:

      12:18pm | 09/10/12

      Levi, there is a difference between being sad, and actually having to make the decision.  While I dont particularly agree with the genetic elitist viewpoint (given that most of us would have been terminated if eugenisists had their way), I think talking about things like miscarriage is exactly the point here.  Miscarriage is natures way of saying there was a problem or complication.  This miscarriage happens to protect the mother, naturally.  Any number of reasons can be cited for miscarriage, stress, deformation, ectopic etc etc.  Whats the difference between having to terminate an ectopic pregnancy, and a pregnancy where the child has a genetic disability?  Some people are able to remove emotion from a decision and make a logical, moral decision without emotion being the driving purpose of the decision - having said that, then following up with an emotive comment like “sully the gene pool” is a little bit ridiculous

    • sunny says:

      01:21pm | 09/10/12

      Colin - surely society values people for their minds and personalities, creativity and cleverness more than their bodies. Who cares about the gene pool except deluded Nazi types, as if the current gene pool is some pristine font of perfection. They (and you) are kidding themselves. Smart, likeable, articulate people (like Stella) are what makes the human race better off . And I’m not saying that dumb supermodels and elite sportspeople don’t also have a place.

    • Colin says:

      01:33pm | 09/10/12

      @sunny 01:21pm | 09/10/12

      I don’t think that the Gene Pool is, “...some pristine font of perfection…”; far from it. But it is a dangerous path fraught with many dangers where a society allows dangerous mutations to be reintroduced into the genetic amalgam…

      Remember that - once - it was also socially acceptable to leave any newborn that was “Not Quite Right” out on a cliff ledge overnight for the animals to take…and human robustness improved over the generations.

    • Tim the Toolman says:

      02:07pm | 09/10/12

      “surely society values people for their minds and personalities, creativity and cleverness more than their bodies. “

      These are all attributes that can be improved, or suffer decline, through the attributes of genes.  Your genes are part of a symbiotic relationship with the environment, that determine who you are and how you act.

    • sunny says:

      04:48pm | 09/10/12

      Colin - “But it is a dangerous path fraught with many dangers where a society allows dangerous mutations to be reintroduced into the genetic amalgam”

      Now there’s a sentence full of danger!

      I reckon it would be a dangerous path if “society” disallowed the birth. That type of closed minded society you’re talking about wouldn’t last too long. Where would they (we) draw the line?

      It would also be a closed minded society that disallowed the parents to have an option. So the society we have here now has got it about right in that the choice comes down to the parents.

      Further to that I reckon that now we’re in the Couch-and-TV-olithic era, that kind of survival-of-the-fittest mentality is no longer relevant. Open mindedness is far more beneficial to society.

    • jade (the other one) says:

      11:40am | 09/10/12

      Stella, I admire you and appreciate that you have had the opportunity to lead a wonderful, enriching life. But the reality is that some parents simply would not be able to afford to provide their disabled children the necessary care, resources and attention that is required to provide this.

      The enrichment, emotional growth, and opportunities can only be provided when basic needs can be met by the family without compromising their home, their jobs, or their own needs.

    • Kika says:

      11:58am | 09/10/12

      And we’re not just talking about affordability in the financial sense - some people just aren’t emotionally or psychologically equipped to deal with the challenges that come with having a disabled child. Anyone can be a mother or a father, but to be a good Mum or Dad, especially when you have a disabled child, is especially tough and I applaud all parents who do choose to keep their disabled children through thick and thin.

    • jade (the other one) says:

      12:29pm | 09/10/12

      @Kika - I applaud all parents who choose to only bring a child into the world when they are financially, emotionally, mentally and physically capable of raising a child.

      Sticking by your child through thick and thin without the mental, emotional or financial resources to do so is obstinate and ultimately bad for the child.

    • Anne71 says:

      12:45pm | 09/10/12

      Well said, Jade and Kika. It would be a terrible decision to have to make,  and I would never judge anybody for making the choice to terminate. All very well for others to point a self-righteous finger and say that they are Bad People for doing so, but it’s so easy to say that when it’s not actually them who would have to spend the rest of their lives taking care of a profoundly disabled person who will never be able to take care of themselves.

      I remember, when I was a child, one of the neighbours had an adult disabled son. She loved him dearly, and he was well looked after,  but her greatest worry was what would happen to him when she died, as he was incapable of caring for himself.  I suspect that is a question in many parent’s minds when they’re making *that* decision.

    • K2 says:

      11:48am | 09/10/12

      Stella, if “we are not the sum of our DNA” then why do you feel the need to identify as a “feminist”?  Surely that defines you above any other person who does not identify as this, given that to be a feminist requires you are female, a DNA based designation. 

      You define youself as a woman, that defends womens rights, and yet this in itself ignores that men are equal too.  You see, humans do this naturally, and while you have the unique perspective that allows you to see a different angle of ‘being different’ this difference (much like being female) is a cause of your DNA.  So to avoid hypocricy perhaps you should reaffirm your position as a human rights advocate, and not a feminist, because shouldn’t it mean that regardless of your condition, gender, or any other factor. 

      The fact that you are human should be the limit here right?  But to make a differentiation because you are female and somehow female deserve different rights to men, but then in the same breath defend rights of women to choose (and exclude the male partner the same right) ?  How is that different Stella?  Its just a different basis of comparison but to the same effect.

      One final question Stella, assuming that your condition allows you to bear children, would you bear a child knowingly that would be born with a debilitating condition like your own?  Would you be able to cope with all of the challenges that a child with a genetic condition will bring, especially given that you yourself have a disability? 

      Its a moral decision, and one that weighs many many factors, not something I imagine most parents take lightly when faced with a decision of such gravitude.  How then can you bundle these decisions into one heap of just being DNA based?  Of course this is the basis, the ground roots reason for the consideration being required, but it is not the whole of the formulation of the decision it is but one piece of code in a strand of decisions.

    • Allie says:

      12:08pm | 09/10/12

      “Stella, if “we are not the sum of our DNA” then why do you feel the need to identify as a “feminist”?  Surely that defines you above any other person who does not identify as this, given that to be a feminist requires you are female, a DNA based designation.  “

      What trollop. Being a feminist doesn’t require you to be female! My partner (who is male) considers him a feminist, as do many other men I know. 

      And how on earth does defending women’s rights “ignore that men are equal too”? 

      Furthermore, nowhere does Stella write that she “defines” herself as anything - your comment is the first to mention the word. Considering yourself x, y or z doesn’t mean that you “define” yourself by those characteristics or ideas.

      In trying to fault this woman based on imagined logical errors, you’ve completely missed the point, while also making logical errors of your own. How embarrassing!

    • Uncomfortable says:

      12:34pm | 09/10/12

      @Allie

      Your partner can claim anything they want but I’m here to tell you, he isn’t a feminist. He’s just not interested in arguing with you and is more interested in continuing getting laid. Nothing more, nothing less. And that goes for the ‘many other men I know’ (or at least claim to know).

      The only other option is that he’ll be out of the closet soon enough.

    • K2 says:

      12:44pm | 09/10/12

      Allie, the opening sentence of the article - “As a disabled feminist” so if this isn’t defining oneself, I don’t know what is. 

      Theres absolutely nothing wrong with gender equality, but why call it “feminism”, the early feminist movement was about womens suffrage etc great things, but these days feminism is more about immasculating men than it is womens rights (as you yourself said that you husband identified as a feminist) then I doubt he understands the movement at all.  If its gender equality then why say “feminist” because it has the designation FEM in it, meaning it only applies to females, if you don’t see this then you are blind Allie.  To call it feminism BY DEFINITION makes it about women, which ignores completely the similar need for mens rights to be recognised.  Why segregate these?  Why segregate based on DNA? These are the issues she is talking about, and yet she segregates based on DNA from her own opening statement.  Surely you read the article Allie?

      I think its you that has completely missed the point.  Stella argues that we shouldn’t discriminate based on DNA, and yet words like “feminist” do exactly the same.  This is hypocritical.  To argue ones rights matter more than anothers defines something based on DNA as being different, and yet on the same hand argue that we should treat those with genetic conditions the same because we are not the sum of our DNA reeks of hypocricy.  Womens rights should be no more important than HUMAN RIGHTS in general.  Why should we create “feminist” groups when human rights are important not just female rights?  Don’t you get it? 

      Obviously not - how embarrassing for you.

    • Allie says:

      12:53pm | 09/10/12

      @Uncomfortable - thanks for the heads up!

      Clearly we swing in different circles.

    • Bertrand says:

      02:20pm | 09/10/12

      @k2 : I think the reason the author referred to herself as a ‘disabled feminist’ in the opening line of the article is because the article is examining how these two aspects of who she is as a person in some ways conflict with each other when it comes to the issue of aborting pregnancies involving a fetus that has been identified as carrying a genetic disability.  I suspect your post has less to do with finding a flaw in the author’s argument and more to do with your own opposition to feminism.

    • sami says:

      03:04pm | 09/10/12

      “this in itself ignores that men are equal too”
      Ah, no it doesn’t. It is in fact quite the opposite.

      “these days feminism is more about immasculating men than it is womens rights”
      Again, no, no it is not. A few loudmouthed women do not speak for all feminists. Stereotyping is lazy, I’d advise you not to indulge in it.

      I will stop being a feminist when women and men are equal and have the same opportunities in life. Even the little things that may mean nothing to you all add up and mean something to me.

      For example- getting married? The default is for the woman to change her last name. This is not always the case, obviously, but the fact that it is still the default assumption means that equality is not there. That’s just one tiny example but I’d be beating my head against a wall trying to explain it to some people so I won’t go on. I accept that your mind won’t be changed, because you don’t believe sexism still exists. Just know that because something is not your reality doesn’t mean it is not mine.

    • K2 says:

      03:10pm | 09/10/12

      @Bertrand - I assume you are channeling Bertrand Russel, or perhaps it is your real name but that I doubt. - Your presumption about my meaning shows that you made an emotional judgement rather than a philosophical one. 

      What Stella seems to suggest is some kind of “genetic equality, in the face of dissimilarity, but in the same breath speaks of a similar dichotomy, my point being that it is human conditioning that causes both that which she recognises as divisive and also that which she does not even realise she just made division with.  She has based her argument that preconceived ideals dictate the decisions, but does not see that preconcieved ideals also dictate her own decisions, all be the basis of comparison differing.

      Bertrand Russell determined man to be “the product of causes ... his origin, his growth, his hopes and fears, his loves and his beliefs, are but the outcome of accidental collocations of atoms, that no fire, no heroism, no intensity of thought and feeling, can preserve an individual life beyond the grave; that all the labors of the ages, all the inspiration, all the noonday brightness of human genius are destined to extinction in the vast death of the solar system, that the whole temple of man’s achievement must inevitably be buried beneath the debris of a universe in ruins—all these things, if not quite beyond dispute, are so nearly certain, that no philosophy which rejects them can hope to stand ... ”

    • K2 says:

      03:31pm | 09/10/12

      @Sammi - as you have also made an emotive response to “feminism” comments, I suggest you consider the following;

      In rhetoric, loaded language (also known as loaded term, emotive language, high-inference language or language persuasive techniques) is wording that attempts to influence the certain audience by using an appeal to emotion.  (In the topic above the appeal to emotion regarding disability, right to life, and DNA based termination decisions.)

      The appeal to emotion is often seen as being in contrast to an appeal to logic and reason. However, emotion and reason are not necessarily always in conflict, nor is it true that an emotion cannot be a reason for an action. Murray and Kujundzic distinguish “prima facie reasons” from “considered reasons” when discussing this. A prima facie reason for, say, not eating mushrooms is that one does not like mushrooms. This is an emotive reason. However, one still may have a considered reason for not eating mushrooms: one might consume enough of the relevant minerals and vitamins that one could obtain from eating mushrooms from other sources. An emotion, elicited via emotive language, may form a prima facie reason for action, but further work is required before one can obtain a considered reason

      I am asking Stella to move beyond her Prima Facie

    • Bertrand says:

      04:46pm | 09/10/12

      @K2 - I stand by my statement. You are presupposing that feminism is about promoting divisiveness and inequality, when for most feminists it is not. As I said, your argument has more to do with your own attitudes towards feminism than any problem with the author’s arguments in the article.

    • Swamp Thing says:

      12:24pm | 09/10/12

      Life can be tough enough with all yer bits and pieces working 100%.
      I don’t think anyone should be knowingly ‘set up’ to start a life with more than their fair share of troubles.
      @Allie, does hubby sit down to go number ones as well?

    • James says:

      12:52pm | 09/10/12

      If I knew my kid had a disorder such as yours I would abort, and that’s just how I feel about the matter. Had you been aborted you would have been none the wiser as you would not exist to protest. Nor would any Downs syndrome person protest as there would be none.

      You probably feel the need to take on the position you do because to not do so would be too painful for you to deal with, ie you are not normal and never will be, and everyone sees that even if they are polite or keep their mouth shut.

      The genetic health of the people is something that affects us all, not just the parents who decide to have them. People with Downs syndrome require extra care which costs extra money. We are rich now so we can just about afford it but the tolerance of genetic defects will lead to more and more of it. One day we may be much poorer and have a huge number of people with genetic defects to care for along with the elderly with Alzheimers disease, diabetes and other issues costing society money.

      Most people secretly agree even if it contradicts their liberal values (ie tolerance, just not my kid!).

    • Jay2 says:

      02:23pm | 09/10/12

      James. I can clearly see you are not normal and I’m not keeping my mouth shut, so you are incorrect in that assertion.
      You present as being an anti social narcissist , but I forgive you as you probably lack the tools to recognise that fact and therefore you have not done anything about it.

      Where there are people, there are inevitabley health complications and unless you have elevated yourself to a Godlike status, James, you do will require some medical care at some point in your life and thus cost society money.
      Most people secretly agree with you James??? If you say it is so, it will be.lol.

    • CK says:

      05:41pm | 09/10/12

      First of all, I’d like to thank Stella for a great article.

      Secondly, I find the statement, “Most people secretly agree even if it contradicts their liberal values (ie tolerance, just not my kid)” to be very condescending. Just because people openly disagree with you doesn’t mean they secretly agree with you. They just don’t agree with you because they have a different world view or different experiences. Period.

      As for ‘affects us all’, a lady with osteogenesis imperfecta was voted into the UK parliament. Yeah, she ‘affected’ policy and government in a country. I know of someone with OI working in community services. You know how this person is ‘affecting us all’? By working in an understaffed industry, paying taxes and improving the quality of life of people in her community. What a ghastly drain on our money this person is! Statistics would tell us that a child of parents who come from generational welfare and drug issues will quite possibly cost enormous amounts over their lifetime. Should they be aborted on the basis that stats indicate they might cost a bit and affect us?

      Your perception that people with disabilities have nothing to offer but a drain on the system and the costs of ‘genetic defection’, seems somewhat outdated. Thank goodness we have some law and policy to ensure such attitudes aren’t allowed to permeate our public spaces, workplaces and facilities.

    • seniorcynic says:

      01:22pm | 09/10/12

      Antenatal screening would most likely be only done for women aged over 40 (for Down’s syndrome) and where there is a family history of genetic abnormalities. So most cases would not be picked up unless by ultrasound and it might be too late then for termination. Stella does not mention the financial cost of her condition both to her family and society.

    • Jay2 says:

      03:09pm | 09/10/12

      Yes, but how does anybody predict what they may or may not cost society?

      Cancer costs society, treatments are hideously expensive. Diabetes costs society. continuing testing/treatment expensive. Accidents cost society.  Obesity costs society. Dementia costs society. Poor dental health costs society. Depression and other mental health conditions cost society. Smoking cost society. Alcohol costs society. Having babies and dying costs society.


      Unless one can guarantee that they will never have an accident; never get cancer; not have babies; not have children; never need any diagnostic testing and not die , you cannot then point the finger at what somebody with a disability may or may not cost society, when you yourself at some degree and point, will cost society. I guess that is what living in a society entails really.

      So sooner or later, EVERYBODY costs society.

    • Loxy says:

      03:27pm | 09/10/12

      Actually seniorcynic what you said is completely untrue. At all women’s first ultrasound the doctor looks for markers of genetic abnormities. If the ultrasound shows the baby has a certain number or more of the markers then the doctor will immediately recommend an amniocentesis test to confirm one way or the other (no matter what age the women is).

      As women have their first ultrasound at 3 months, this allows for time to do further checks via the amniocentesis test and abort, if they choose.

    • Joey McGarn says:

      01:45pm | 09/10/12

      Well, everyone dreams of that perfect family, with perfect kids, with holidays to exotic locations every now and then. If you know your child is going to have a disability, it becomes a very real fact that maybe that dream won’t be a reality. I’m not saying disabled people are any different to us, it’s just every parent want’s this dream. They think it’s going to be difficult with a disabled child, and I can’t say it won’t, but I can guarantee you that it’ll be worth it in the long run. Me and my wife made they choice that we wouldn’t terminate, and I’ve never been happier with my life. An amazing 15 year old son who may not be able to walk, play sports, but he’s beyond intelligent, he is amazing personality wise. A disability doesn’t have to be set choice.

    • Jay2 says:

      02:14pm | 09/10/12

      Thanks Stella, lovely article.

      I think making decisions on termination, is highly personal and one that either way, I wouldn’t make a judgement on.
      I have seen many people that have had children with physical and mental challenges, the biggest thing Parents worry about, is how their son/daughter will be when Mum/Dad isn’t around but NOT ONCE have I ever since a hint of regret for having that son/daughter.
      I have also seen how hard it is when that son/daughter has an impairment which sees Parent/s as the primary carer 24/7 which is why I was hoping that Disability would be realistically addressed by successive politicians.

      Gosh, I must admit I drew a breath when the “I made the right decision” was uttered.

      It reminded me of a programme I was watching many years ago, where a man born without arms was hilariously telling how a commercial airline made him sign a document acknowledging that he indeed had no arms boarding the plane and in the event of an unlikely accident, he would not sue them by saying his lost his arms in said accident.. He said what did they think he was going to do “Gee, I had arms when I got on the plane…”
      He also told a story, with great mirth, that a woman was watching him intently, while he was using his toes and feet to have a cup of coffee. She hesitantly approached him and professed her admiration for how he managed. “Gee thanks” he said. The woman paused, “Yes, I was having a rotten day, feeling sorry for myself and then I saw you, I thought look at THAT poor bugger…”.

      I never laughed so hard. The thought of that woman, who was indulging in what she thought was a touch of sincere good samaritanship, not even slightly realising how bloody appalling she was being and this man finding such humour in her ignorance.

      The only thing I’ve experienced, that doesn’t come remotely close, is a friend of my MOthers exclaiming at my mass of curly hair, “Oh, you’ve got your Dad’s hair….” and as I was about to say “thanks” (because I actually like my hair) she finishes emphatically with :  “YOU POOR THING”.  Aha ha ha… Yes, they’re out there allright.

      Thanks again for the beautifully written article.

    • Carol says:

      03:02pm | 09/10/12

      Good on you, Stella! For all our so-called enlightenment, our culture is basically intolerant of imperfection. The lack of depth in any discussion around genetic screening and the termination of ‘disordered’ fetuses smacks more of fear than rationality to me. No society can truly value what it fears. Keep up the writing, Stella.

    • Loxy says:

      03:22pm | 09/10/12

      I applaud you Stella for not just your courage and passion in life but your ability to write an open and non-judgemental article, despite your very personal experience with the topic.

      I find it distressing and abhorrent that someone could be as insensitive as that lady was who told you she terminated her child with your condition and I admire the way you handled the situation.

      One point I wanted to add that your article and others I’ve read recently missed is that I think the ‘quality of life for the parents’ impacts the decision to terminate as much as ‘the quality of life for the child’. Depending on the condition, some disabilities will mean that parents will be looking after their child full-time for the rest of their lives. That’s a huge responsibility and stress – something a recent Insight episode highlighted.

    • Devora Lieberman says:

      04:00pm | 09/10/12

      At Genea, the Australian IVF clinic that does the most PGD for genetic conditions in the country, it is the future parents who decide whether or not to have IVF and genetic testing.  Often, one partner is affected by the condition, and they do not wish to pass it on to a child, or they have seen the suffering of family members, or have lost a child to kidney cancer or cystic fibrosis. 
      It is PARENTS who should be allowed to access technology and make decisions for and on behalf of their children.

    • Pete the gibberer says:

      04:28pm | 09/10/12

      Terrific article. A contrast to the nihilism of Peter Singer.

    • Mother Duck says:

      05:03pm | 09/10/12

      Gosh, this subject is just too deep for some of the people writing here.  I personally think, to some degree we are all ‘broken’ in different ways… some brokenness we can see, and some we can’t.  The idea that people with bodies that don’t work like ours are more of a burden, than say, a person with depression, or anxiety or learning difficulties, is just shallow and sad.  Hands up everyone who is ‘perfect’... never a ‘burden’....

      History has shown that a civiized society can be measured by how well it takes care of its weak and vulnerable.  Stella’s condition is an opportunity for us to understand that our worth and value is far more profound than the way we can move our bodies.

    • Bron says:

      05:48pm | 09/10/12

      Now that it’s started where does it stop though.  Get rid of the “defective” babies before birth…then do we start killing off our kids when they fall out of a tree and get brain damaged or become paraplegic in a car accident?  Do we kill off mummy or daddy when they have a stroke?  Where does weeding out the “imperfect” people stop? Or are people so shallow now that they’ll decide to not have children at all because there is too much risk involved?  Life is life, you never know what will happen around the next bend.

    • Ali says:

      06:23pm | 09/10/12

      Hi Stella
      I just wanted to say how refreshing it is to read what you write. I really enjoy your perspective. I carry a genetic condition on one of my X chromosome which leads to a vision impairment. I saw genetic counsellor at age 11 and my mother was very keen for me to have my children via IVF with pre-implantation genetic testing. I chose not to go down this path. My son now has this condition and I dont regret my decision for a minute.

      I think your statements about quality of life are very true. It is very difficult for medical practitioners to accurately understand how another person values their own life - esp when they often only see people in hospital when they are at their most unwell/unhappy.

    • Servaas says:

      06:41pm | 09/10/12

      This is what undermines Savulescu’s theories: reality. Ironic thing is that this reality also undermines Young’s satnce on abortion. Why do people equate feminism with being in favour of abortion? The right to take a life is not something men has and women now also want. Men impregnating women and walking away from their responsibility is what feminists should fight for, not the killing of babies.

    • Matchofbris says:

      07:05pm | 09/10/12

      Interesting article, and the train story. Holy crap. Just. Wow. Awkward.

    • Beats By Dr.Dre Studio says:

      01:10pm | 05/11/12

      The other day, while I was at work, my sister stole my iphone and tested to see if it can survive a 30 foot drop, just so she can be a youtube sensation. My apple ipad is now destroyed and she has 83 views. I know this is totally off topic but I had to share it with someone!

 

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