• Academic Freedom, Down Syndrome, and Cognitive Dissonance

    Professor Jones
    Professor Jones of Otago University

    My fellow SINner Russell Blackford has put up a post called “Down syndrome, disability, academic freedom” that he is getting a lot of flack about.

    In it, he defended the rights of Professor D Gareth Jones of Otago University to publish an academic paper called “Testing times: do new prenatal tests signal the end of Down syndrome?” In this open-access article, Professor Jones and his co-author (a student) discuss the current state of prenatal screening for Down Syndrome (DS) in New Zealand and possible implications.

    Since 2010, prenatal screening for Down syndrome (DS) has been offered to all pregnant women in New Zealand. The programme has been criticised by several groups, on claims that screening is eugenic and discriminatory towards those with DS. Recently, tests have been developed that may one day prove more efficient than current screening methods. They are an example of ‘Non-Invasive Prenatal Diagnosis’ (NIPD), which enables diagnosis earlier in pregnancy with less risk of complications. If the current programme raises objections, what threats does this new and seemingly more attractive technology pose to the DS community?

    We argue that NIPD is simply an extension of current screening methods, raising similar ethical concerns. Presently, the programme shows little evidence of ‘eugenics’, demonstrated by moderate uptake rates and varying attitudes towards disability. We do not regard the offer of screening to be threatening, as women choose whether or not to be screened depending on their own personal circumstances. One day, prenatal testing may result in fewer people with DS; but past and present trends indicate these individuals will continue to be supported, irrespective of ‘group size’. Care and respect for the disabled will remain essential, regardless of a woman’s decision over her pregnancy.

    SD logoIn his article, Blackford specifically addresses the call by an organization called Saving Downs (SD) for Professor Jones to resign from his academic post due to what the press release says is “a highly offensive and discriminatory paper about prenatal testing for Down syndrome.” The main point of contention appears to be that Saving Downs does not see DS as a disabling condition. Their press release states:

    Concepts that they are a “disadvantage” or “immensely difficult” are extreme forms of discrimination that reinforce negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice.

    SD spokesperson Mike Sullivan also takes offense at the use the wording “suffering from Down Syndrome,” as he declares

    [S]uch attitudes are extremely hurtful and false. People with Down syndrome are not deformities and they are not sufferers. Such concepts are harmful, discriminatory, ablest and eugenic.

    Such language is not unique or new in the debate over prenatal testing for DS and possible results of such (including a potentially lower number of people with DS being born).

    What is striking about this press release, to me, are two things. First, SD is calling for the resignation of someone because they disagree with his view point. This is absolutely ridiculous for a number of reasons. Debate (even very heated debate) on sensitive issues is a sign of a healthy society, where people can express their views without worry of censure and recrimination. Suppressing dissenting opinions is not healthy for society and is more in line with dictatorship or fascism than democracy. If every time one person disagreed with another resulted in one of them losing his/her job, we would have no one doing research in academia or addressing controversial issues in research. The ability to be challenging of others’ viewpoints is the very crux of academic freedom. As the American Association of University Professors (AAUP) states:

    Academic freedom is the indispensable quality of institutions of higher education. As the AAUP’s core policy statement argues, “institutions of higher education are conducted for the common good and not to further the interest of either the individual teacher or the institution as a whole. The common good depends upon the free search for truth and its free exposition” (1940 Statement of Principles on Academic Freedom and Tenure).

    Attempting to suppress this indispensable quality is tantamount to destroying the ability of researchers to discuss and examine controversial topics. Even more frustrating about this is that Jones’ article is not even advocating for mandatory testing or compulsory termination. Instead, they merely a) showed how offering a choice to pregnant women is not “institutionalized eugenics”; b) reaffirmed the individual’s ability to make informed decisions; and c) affirmed that support for those with DS (and other disabling conditions) should be continued.

    The second issue I have is with SD stating that DS is not a disabling condition. Although the definition of “disabling” is certainly up for debate and socially constructed, the sheer number of (generally seen as) negative symptoms associated with a DS diagnosis is immense:

    In addition, the vast majority of people who have DS have comorbid mental retardation (usually in the mild to moderate range), which is by itself a massively disabling condition. Subsequent to this are adaptive functioning difficulties that mean most people with DS will never be able to live independently. Research has also found higher direct costs of healthcare for those with DS, as well as large amounts of indirect costs, such as lost productivity, in various countries (Australia and China, most recently). Any statement that DS does not impair the ability of an individual to function adaptively in society is simply false.

    In the interest of fairness, though, research into the positive aspects of a family having a child with DS has been growing:

    • Most (70%) of families adapt and lead ordinary family lives.
    • Most families report benefits of having a child with Down syndrome for the whole family.
    • Marriage breakdown is no more frequent than for the rest of the population it may even be less frequent.
    • Brothers and sisters do not have more problems than in other families and are likely to be more caring.
    • Resilient families tend to use practical coping strategies they seek out information and services. They join parent support groups.
    • Resilient families develop a supportive emotional climate and encourage open communication between family members.
    • Ageing parents of adults with Down syndrome still living at home have better physical health and life satisfaction than typical ageing parents.
    • Some families (30%) are vulnerable and experience considerable stress. In these families, everyone may be affected by practical, emotional and behavioural difficulties the child with Down syndrome, brothers and sisters and parents.
    • Vulnerable families can usually be identified in the first years of a childs life and will benefit from specific support from relatives, parent support groups and professional services.

    So, having a child with DS is not the end of the world, but seems to have both costs and benefits (to some families). Also not the end of the world, though, is having the choice made available to a pregnant woman to know whether or not her child will have DS, allowing her to make a decision that is appropriate for her.

    Bioethics specialists can speak much more appropriately to the ethical aspects of this issue (prenatal screening and termination) than I can. As a psychologist, though, I can hypothesize about what would draw a person to be so staunchly against others having the ability to choose for themselves in this particular situation. I see two primary forces at play here.

    First, based on my (admittedly brief) research into Saving Downs and the people most vocally in support of it, it seems that underlying the overarching “Keep Downs Around” mentality is an opposition to abortion in general, not just specifically in the case of DS. Certainly there seems to be concern about the reduction of the DS population, but if I were a betting man, I would place high odds that the majority of SD members are also anti-abortion/pro-life advocates.

    Another second factor of influence could be cognitive dissonance. In cognitive dissonance, there is a disconnect between a person’s actions and their beliefs (i.e., you talk the talk but don’t walk the walk). For instance, let’s say I am a cigarette smoker, but at the same time I am aware that doing so is pretty terrible for my health. What happens next is that I become aware of this inconsistency between beliefs and actions, which then causes people to become anxious and uncomfortable (e.g., “Shit, I’m killing myself by smoking but I can’t stop it.”). We then try and resolve this uncomfortable dissonance in one of three ways: change our beliefs (“Ah, these can’t really be that bad for me”), change our actions (“I’m going to stop smoking”), or change our perception of the action (“I know these are bad for me, but I’ll stop smoking before I get married/have kids/some other milestone”). In other words, you rationalize your own behaviors even if they aren’t all that rational.

    Now, why would I bring cognitive dissonance into this discussion? Well, many outspoken critics of prenatal screening for DS (and the subsequent decision by parents to terminate the pregnancy) have direct ties to the DS community. By this, I mean they have a child or relative with DS. Some notable (but not associated with SD, as far as I know) persons in this mindset would include George Will and Lord Brian Rix. Importantly for this article, Mike Sullivan (the spokesperson for SD) has a daughter with Down Syndrome, as apparently does another one of the primary contacts for the organization.

    Looking at this from a cognitive dissonance framework, you could say most people (and I think this is an accurate statement, but would be open to data proving me otherwise) have a belief (“Down Syndrome is a disabling condition”) that does not match with a certain action (choosing to have a child with DS). But then, you either have a child with DS, or you have a test that diagnoses a fetus with DS. What do you do at that point? Three options spring to mind to reduce the dissonance between belief (DS is bad) and action (having a child with DS):

    1. You can then change your beliefs to “Down Syndrome is not a disabling condition.”
    2. You change your actions to terminating a pregnancy after a prenatal DS diagnosis.
    3. You rationalize having a child with DS with the belief that DS is disabling by saying “For some families it may be hard, but we are strong and can handle this, and it will have benefits for us.”

    For the people in Saving Downs, they appear to have reduced their dissonance by changing their belief, now saying that DS is not a disabling condition and therefore should not be something that is “screened out” of the population. For the apparently 90% of New Zealanders who elect to terminate their pregnancy after receiving a positive for DS test result, their dissonance is instead reduced by changing their behavior. I would imagine that the people who have a DS child after electing to not have the screening would use the rationalization route to dispel their dissonance by perceiving their choice as “it was the right choice for us, and we wouldn’t do a thing differently if we could.”

    So, using this framework, you can understand a bit better the reasons why the people behind Saving Downs think the way they do, as well as why Professor Jones and those that elect not to carry a DS pregnancy to full term think their way. Expanding this a bit, we can see that Jones’ statements of DS as being disabling and that people suffer from it are likely to strike a very raw chord with the SD crowd, as it directly contradicts their new, dissonance-reducing belief system. This, in turn, likely could cause them to doubt their reformulated belief, triggering that uncomfortable inconsistency and a need to reduce it by once more asserting their new belief (e.g., that DS is not disabling or a problem for families) and attempting to squash any further assaults on their new belief (by silencing Jones).

    Who’s right in the DS screening debate? I certainly don’t know. What I do know, though, that the bullying behavior of SD is quite reprehensible, even if it is understandable from a psychological perspective.

    Category: HealthMedicinePoliticsPsychology

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    Article by: Caleb Lack

    Caleb Lack is the author of "Great Plains Skeptic" on SIN, as well as a clinical psychologist, professor, and researcher. His website contains many more exciting details, visit it at www.caleblack.com

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    • Harold Bernhardt

      As an adult with type I diabetes – and with two sons who have inherited the condition from me – I find the argument that “Research has also found higher direct costs of healthcare for those with DS” as a rationale for discriminating against Down Syndrome, somewhat disconcerting.
      Harold Bernhardt, Dunedin, New Zealand

      • I think the central issue here isn’t discrimination, Harold, but that certain parties feel women should be given an informed choice in this matter, while others would deny them choice. Obviously, this may come down to a pro-choice/pro-life personal belief (as I mentioned above).

        • The central issue is discrimination. We don’t, in New Zealand, allow this informed choice for other conditions such as sex and ethnicity. That choice is just provided based on a subjective view of ability, which discriminates against the disabled. In the UK there is a parliamentary inquiry on this exact issue. Google abortion for disability.

          • SmilodonsRetreat

            So, you would rather a person be born and grow up with significant medical, physical, and mental problems rather than preventing that from happening?

            I’m sorry. But I fundamentally disagree with that position. Gender and ethnicity do not cause physical and mental defects… and there’s no other way to say it. There are mental and physical problems with all of the major genetic disorders.

            Can a person with Down’s ever live a non-assisted life? If not, then there is a significant problem.

            I have a very harsh view of this not because I don’t care about the child, but because I care so much that I wouldn’t want to subject them to the effects of Down’s or any number of other genetic problems if I could prevent it.

            • You need to get into the real world mate.

            • SmilodonsRetreat

              Awesome come back. You’ve got me gibbering in a huddled mass…

              I think, by your answer, that it is clear that this is not an issue of discrimination or the child or anything else. It is about your belief that it is wrong to abort a fetus and that’s pretty much it.

              It appears, and you’ve done nothing to contradict this, that you would rather a child suffer for decades than take a simple step to prevent that suffering.

            • You are just showing your ignorance and fear of the reality of people living with disabilities, hence the need to experience it rather than being so judgemental. There are numerous blogs on our web site detailing why this is an issue of discrimination.

            • SmilodonsRetreat

              I continue to note that you are not contradicting the things that I’ve said.

              This isn’t about me. As much as you would like to redirect the conversation to me and blame me for all sorts of failings that you think I have because i don’t follow you to the letter… it’s not.

              It is not an issue of discrimination, no matter what you may think or say.

              Do you, Mike Sullivan, have the right to decide for everyone on this planet, that all persons who show genetic damage that, at this time, cannot be repaired, are required to be born and suffer throughout their (often) short lives? Because that’s what you are promoting here. Do you have the right to decide that for everyone?

              Let me ask you this, since you won’t answer my other questions. If we could cure Down’s, would you support this testing?

            • S Duncan

              Hi there, I do believe we are all entitled to our own opinions on things, but do wonder what exposure you have to people with special needs. There are two statements you make that I find incredibly difficult “that you would rather a child suffer for decades than take a simple step to prevent that suffering” and “required to be born and suffer throughout their (often) short lives?” Please see my other posts on this piece above about what my daughter gets up to. I have tried to be even and fair with my comments but to even suggest my child suffers is the biggest piece of crap ever written. She is a happy, vibrant energetic child who dances at a swimm meet, has far more energy and living going on than many teenagers her age and has compassion and empathy in abundance. She cheats at cards, has a fabulous sense of humour, is well travelled. And for the record, many people with Down Syndrome live well into middle age ( the ones I have known recently who have passed away have all been in their 50’s)

            • SmilodonsRetreat

              I agree that everyone is entitled to their own opinions on things. So, I’ll assume you’ll be writing to this organization and telling them that they are wrong for calling for the firing of this professor?

              I assume that you’ll agree that testing for genetic conditions like Down’s is up to the person whose child it is and is not your, or anyone else’s decision.

              I’m glad for you and your daughter. I think that you are a strong person for caring for her and I’m glad that you and her have a good life. A lot of people, even without genetic diseases don’t have that option. A lot of people can’t deal with such conditions in themselves or loved ones.

              Again, you don’t have the right to make those decisions for anyone else. Just you. I’m sure that you made the right decision for you and your family. It may not be the right decision for others.

              And for the record, you too, are attempting to make this a personal debate by attempting to point out my failings. This has nothing to do with me or my decisions.

              As the blog post points out, this has to do with suppression of opposing opinions and I’m pleased that you agree that the professor should not be fired for expressing those thoughts. heck, I’ll even give you a guest post on my blog, where you can write your letter in support of the professor and against the organization that is calling for his firing.

            • S Duncan

              I don’t believe I pointed out any failings of yours, merely asked what exposure you had had with special needs. The rest was describing MY difficulty with things you said given my own experiences. No I do not agree with everything Mike says. MY personal opinion is that women should be given good information, that they be made aware that having a child with DS is not all doom and gloom which is what is often portayed by people who have not been exposed to DS. They also need to be made aware of the path they are embarking on that will likely lead to termination. If I have a client who wishes to go down that path then I do support them. One of the things I think has come from Mikes postings and also from my experience as a midwife is that those who make the decisions about what testing is available are in a powerful position and some are prone to put pressure on vulnerable women when they in the decision making process

            • SmilodonsRetreat

              I am sorry. Perhaps I read too much into the comments.

            • S Duncan

              thankyou

            • All the points are covered over on our web site, I am just not going to the effort to repeat them all here.

              Cure? You are confusing issues. It’s not the presence of the extra chromosome that is the issue, that’s a natural occurring part of human diversity. Curing medical issues for all human beings is fine, irrespective of genetic variance.

              Pop over to the site if you want the answers to the other questions you have rasied. You haven’t brought anything new to the table and it has all been covered before.

            • SmilodonsRetreat

              OK, so curing the disease is OK. So it’s not the testing that you object to. It’s actually that you object to the possible consequences of the test at this time. Which is simply that some people would choose to abort a fetus that carries a genetic disorder like this.

              It’s not discrimination. It’s not even Down’s. You object to abortion. Why not just admit it?

              As far as going to your website… you came here. I know my feelings on the subject. I’m just exploring yours. Honestly, my decision has already been made.

            • S Duncan

              me again, wondered if you might like to check this link and then tell me you still think that your statement “that you would rather a child suffer for decades than take a simple step to prevent that suffering” is correct. I am not saying you don’t have any valid statements but you asked to have your statements contradicted.
              http://www.youtube.com/watch?v=9VG7dh5W40I

              .

            • RussellBlackford

              Hardly a reasoned response.

            • No one ever leads an unassisted life. My mom changed my diapers and now she is helping her mother with her diapers. Needing other people is why we live in a society rather than in solitary.

              If society concerns you, I recommend starting by unplugging your computer.

        • Harold Bernhardt

          Hi Caleb, thanks for your message. I don’t disagree with you, and I realize it was a small part of your overall argument, but just felt uneasy at some of the implications of using medical costs as a criterion for making decisions in this area. As Bob Dylan wrote, “I can only think in terms of me…”

    • One does not suffer from Down syndrome; it is a naturally occurring chromosomal arrangement that has always been a part of the human condition. If you have Down syndrome you are a person.

      If a person has a particular negative medical condition, such as cancer, then one suffers from cancer, not from being a person. If you are a person with Down syndrome who has cancer, then you suffer from cancer, not from being a person with Down syndrome.

      My personal actions and beliefs in my advocacy work are based in my unconditional love for my daughter, but I am happy to grant that you know more about me than I do.

      If you think academic freedom grants you the right to promote whatever you like, just rewrite the offending paper replacing the word “Down syndrome” with “(insert any discriminated ethic group of your choice)” and see what reaction you get.

      • The professor has the right to promote as he chooses, but does not have the ability to choose the consequences of what he promotes. Accountability for institutionalized ignorance.

        • Patrick The Reverand Mayfield

          Anti-Intellectualism does not shield you from ignorance.

      • Peter Fobian

        From the tone of the article, I wouldn’t have even described Russel Blackford’s as having promoted anything so much as he was speculating probable cultural consequences of the availability of a new technology. He never stated aborting the fetuses was right or wrong decision. If someone speculates that new legislation will increase drug use as a result of increased availability, that doesn’t necessarily mean they are promoting drug use.

        Additionally, while this may be off topic, I’m curious if you consider the term chromosomal disorder to be derogatory. Downs Syndrome and other conditions caused by atypical chromosomal arrangements can be extremely debilitating and fatal. Given the list of associated symptoms, I have difficulty seeing the validity in an argument that it is not a disability. In the same way I have difficulty seeing the validity in an argument that you do not “suffer” from associated symptoms such as heart palpitations and seizures.

        • He wrongly states that our main point of contention is that we don’t see Down syndrome as a disabling condition. What we objected to was a statement that people suffer from Down syndrome. Which they don’t as I have explained. His whole discussion on Down sndrome relates to something I never said.

          The term disorder is a medical one. In New Zealand we use a social model of disability model of disability which sees the person, not the condition.

          • Peter Fobian

            So you do agree, then, that it is a disabling condition? The cited line in the press release used the word “disadvantage” as the discriminatory term.

            Perhaps the disagreement arises from a difference in terminology based on our country’s different models. I must say, though my experience with Downs Syndrome is limited, that I find it difficult to believe individuals cannot be described as suffering from a condition which presents very apparent difficulties to the individual. Or that it could be said that there are no individuals with Downs Syndrome who, perhaps, wish they did not have it.

          • RussellBlackford

            But they do have an adverse condition that reduces their capacities. That is all that is meant by saying they “suffer” from the condition. I even made it plain in my original post that I was open to hearing arguments that they can be subjectively happy. My real objection was to calling for someone’s resignation because of their views on something like this – a bullying tactic that goes completely against the concept of academic freedom. Even if the guy had been wrong, that does not mean he should resign or that such a point should even be raised.

            All that said, Down syndrome is a bodily condition that tends to prevent them from doing many of the things that people without the condition can do. Cognitive development is slower, average cognitive capacity is well below average, life expectancy is substantially shorter, there are often perceptual problems, and there are often problems, sometimes severe, for the families concerned. I’ve seen it myself, but I’m not relying merely on anecdotal evidence – all this is well known.

            Down syndrome is a very disabling condition, taken on average, and no amount of pretence or fencing with terminology can remove that fact. Even you have now clarified that you don’t object to it being called a disability. Fine, but it is perfectly reasonable to describe someone who is labouring under the disadvantage of such a condition or disability as suffering from it. It is also perfectly rational for parents to want to be warned in advance if they are going to have a child with Down syndrome, and it is perfectly rational to choose to abort. It is not just some neutral genetic variation, like the variation between green eyes and blue eyes. Whether or not you like the word “disorder” (which Professor Jones may or may not have used) it is what it is. It is a disabling and often very difficult condition. It is inherently disadvanteous in its effects on capacities. It is a condition that you can quite reasonably describe someone as suffering from.

      • Patrick The Reverand Mayfield

        Why are you making this personal, no one attacked you, no one said they know you more than you do, no one even eluded to that.

    • And since you decided to cast judgement on my family, you could always learn a bit about us first http://www.tv3.co.nz/60-MINUTES-Down-But-Not-Out/tabid/3692/articleID/83817/Default.aspx

      • How was I casting judgment, Mike? As I state above, I am merely hypothesizing about a possible psychological mechanism that could be at play. The entire reason I wrote this article is because of a conversation I had with a fellow professor whose brother has Down’s. She was absolutely flabbergasted that anyone could think of DS as NOT being a disabling condition, so we began to brainstorm why someone would think that. Being psychologists, we turned to our familiar theories.

        • You choose to speculate about my own motivations. As I explained I am motivated by unconditional love for my daughter not your dissonance waffle. Why is it difficult for you to accept that people love each other for who they are?

          • It’s not difficult at all for me, Mike. I have a wife with a severely disabling, chronic health condition that has caused us immense amounts of difficulty. But, love her just as much now as I did when we got married. That doesn’t impinge upon my (or anyone else’s) ability to speculate on what causes people to have the beliefs that they do. You say that your actions are motivated purely by love, which I do not doubt.

            That does not, however, entitle you to make bullying press releases and attempt to tell other people what choices about their future they should or should not have.

          • RussellBlackford

            Well, talk about personal and uncivil.

        • I have pointed out your false assumption about the disabling condition able you took further below.

          • I spent time in college working with numerous disabled adults, all of whom had mental retardation in the moderate to severe range, and during my years as a psychologist have worked with large numbers of people with a range of disabilities and conditions (autism, Fragile X, Down’s, as well as the “less severe” things like OCD, social anxiety, borderline, and such). I spend the
            majority of my time either training people to help those with disabling conditions or doing so myself.

            I say this to help put into perspective my concerns in the above article, which are solely focused on a) bullying of an academic for a (from my more neutral stance) pretty fair/balanced article and b) stating that DS isn’t a condition that causes problems (for the person with it and their family). I don’t think it is my call to make decisions for others, but I do respect others’ right to make decisions I disagree with. That seems to be the distinction between us.

    • Advocating for the choice in termination of a baby due to a genetic trait that may or may not have higher societal costs, etc., listed in the article, strikes me as the definition of eugenics. Gender and race also have bearing on overall societal cost… do you also support these as relevant and acceptable reasons for termination? The mother’s womb is by far the most dangerous place for a baby with Down syndrome to exist. The professor’s language is extremely offensive not only to parents of children with Down syndrome, but also to people with Down syndrome. He speaks of them as if they are abstract concepts and not actual people.

      Then, why, having already made the societal decision that we are willing to spend money/time/resources to train/educate/support people with Down syndrome after they successfully escape the womb, is it acceptable to to support termination of such a baby before they are born due to higher possible healthcare costs? Preventative, proactive, measures to spare society possible increased financial costs IS eugenics.

      • As I said above, Brett, I’m not advocating for either side here. I wrote this article as the result of a conversation I had with a fellow professor whose brother has Down’s.
        She was absolutely flabbergasted that anyone could think of DS as NOT
        being a disabling condition, so we began to brainstorm why someone would
        think that.

    • S Duncan

      How does the cognitive dissonance theory work for the hundreds of families around the world who have chosen to adopt a child with DS. Many of these families already have other children so are not in a situation of fait accompli, and adjusting their mindset to cope. They understand that this is a child first and foremost, who will have their issues growing up, just like many other children do. My “normal” son has required far more healthcare than his sister with DS has, and she is a far easier teenager to deal with than her brothers ever were.

      • That’s a very interesting question. I wasn’t thinking of adoptive cases, but instead the SD foundations’ spokespeople. I would guess that the reasons have more to do with being highly altruistic, not reduction of dissonance.

        • S Duncan

          I don’t know there was much altuism in play for us…we wanted another child, we couldn’t have one of our own, we had options. We researched Downs for about a week and concluded it wasn’t a big deal so went into a pool of available parents (local NZ adoption) for a child with or without DS. Until 6mths after we brought her home and went to court we had an out. We had more problems with other peoples reactions than we had with our child. However I do also acknowledge that children with DFS have varying degrees of issues. She is now 17, bikes to school (2k’s each way), swims, horserides, does womens triathlons, travels with us overseas, loves being pillion on Dads big motorbike, can cook basic food, in fact I would say lives a healthier, more fulfilling lifestyle than many other kids her own age, and the negative implications on our countries economic state is less than the many :normal” citizens who are on benefits and filling our jails! For the record I am also a midwife and part of my role is making parents aware of the availability of screening…and the term screening is the vital word for me. Many parents think the screening will tell them whether their child does or does not have DS. They are surprised when they are told that ‘no’ all it does is give them a risk factor. potentially can come after. I do think many are misinformed about what the initial screening does provide

          • It sounds like, for your family, adopting and raising a child with DS has been a hugely positive experience. Your daughter sounds like an amazing individual.

            • S Duncan

              She is Caleb. My point with telling you about her achievements is that in the ‘disability’ continuum classified by society she is probably mid range,by no means a high achiever. MY opinion is that because not many years ago people with DS were shut away from society in institutions they were in society’s eyes blended in with the mentally ill (who we also have incorrect views about) and insane, and as there are less and less people being born with DS less people are getting to know them. It is common to have a degree of fear of those things we don’t know and understand. Vulnerable women are being encouraged and sometimes bullied into making a decision about a condition that they not only have not been exposed to but also given very negative information about. The conversations about people and families affected by suffering, misery and early death because of DS are in MY opinion not the experience of most who do live with DS. I wonder how many people with DS would say to society and their parents ‘oh my life is so miserable, I wish you had not had me’. I have no doubt that for some families (but I would suggest a small minority) life is difficult but they do still have choices. That is no different than other families in society who find life difficult for many reasons…lack of money, out of control family members, family members in jail etc, Quite frankly I would rather have our daughter than a child in jail, and for those who cite the financial implications…someone in jail for several years probably costs the taxpayer much more than a child with DS.

    • An excellent post, Caleb. really fair and balanced, and well reasoned. I really saw CD in some of the posters at Russel’s. CD is sooo prevalent in our every day rationalisations.

      • Thanks JP. I agree that CD is hyper-prevalent in our behavior (maybe I’ll write about it for my next book chapter!).

    • SmilodonsRetreat

      Question:

      If a technique was available to repair the genetic problems that cause Down’s while still in the womb, would you do so? Why or why not?

    • Patrick The Reverand Mayfield

      And so much is lost on the arguing of semantics, for the thinker is oppressed and discriminated against for having a thought in the first place, the rabbit hole has no end in sight.

      • No. He is being made accountable for putting an ethical case for eugenics based on a principle of there being a “greater good” in not having children with Down syndrome in the world due to a perceived biological disadvantage.

        Try arguing that logic using an ethic group.

        • Patrick The Reverand Mayfield

          And yet as he has stated time and time before, he is not making that case, he is merely discussing should that case even be made, there is a difference. You are not arguing logically, you are arguing emotionally, which is fine and fair, but you aren’t having a discussion, you are preaching.

    • Academic Elitism and Heart Dissonance. Theory versus lived experience. Nuff said.

    • You mention as proof of a “disabling condition” heart defects, but I don’t think you mention they almost never have heart attacks. So, by contrast, those of us with 46 chromosomes have a “defect” in that we are predisposed to heart attacks. The same could be said for hard tumor cancers (which they never have) or emotional intelligence – which many such folks show an abundance of. As Albert Einstein once said “if you judge a fish by how well it climbs a tree,….”

      You also go to the well of common opinion as a point of reference “most people would consider DS a disabling condition”. I would argue that would be true of most 1st world folks opinions of dark skin folks 150 years ago. It turns out that this was driven by pervasive (ignorant) stereotypes rather than true capabilities. So, let us not lean to hard on that post.

      As for cognitive dissonance, I have a child with DS. I am pro-choice, and I agree with much of what SD has to say. Why? Because my cognitive dissonance was solved, as you point out, by changing my view of the condition. And I believe stereotypes misinform expecting parents to make sub-optimal decisions. I did not choose to have a child with DS, it was a surprise at birth. It was a terrorizing, kick in the pants, and a deeply depressing period for me (like many parents). But almost all (like 97%) come to the exact same conclusion – that having a child with DS is a positive and much better experience than ever expected. The remaining 3% seem to have attached this birth to a knick in their egos.

      Most parents of a child with DS receive the diagnosis at birth – many of whom passed screening successfully (there is not as much self-selection bias in our parent population as you would like to believe). And in spite of that, 97% think it is a positive thing in their life. The only two conclusions you can draw from this is that in spite of our multitude of cultures, religions, beliefs, personalities, goals, and personalities we all came to the same ego-protecting conclusion that having such a child is not so bad (let’s call this the heterogeneity of delusion conclusion) or that what we have come to realize is the true state of being (the reality conclusion).

      Considering that humanity speaks 1000’s of languages, has 1000’s of religions, and makes 1000’s of different career and lifestyle choices, it seems highly improbably that we all come to the same belief system that having a child with DS is “good” unless it is true.

      The flip side of the cognitive dissonance argument is that if you believe it is “bad”, but all of those who are experiencing it say it is “good” you either have to discredit them as not representing people like you or you have to reason they are delusional or you have to change your perception. It appears you are looking to believe our population cannot be representative of the general population – when in fact data would indicate otherwise. I applaud you for being able to build a wall of denial that high.

      Good-on-ya

    • Chris Attig

      You make this comment: “Any statement that DS does not impair the ability of an individual to function adaptively in society is simply false.” While I agree that DS does impair the individual ability to function in society, I’m confused by your use of the word “adaptively” … can you explain to me your understanding of that word? Many thanks. I enjoyed the post.

      • Thanks for the kind words.

        By adaptively, I’m meaning the ability of the individual to effectively navigate and thrive in their world. For example, the majority of people with DS are able to function in society primarily as a result of scaffolding (support) provided to them by family, friends, and social safety nets. Without those, they would not be able to do very well in day-to-day life.

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