(I gave this presentation when Kathleen and I were invited by the Fundació Catalana Síndrome de Down to close their 17th International Conference on Down syndrome, in Barcelona, November 10th, 2017)
How do you go about telling your adult child that the world doesn’t want more people like him/her? That “It’s OK to be different” is the biggest lie you ever told them? I struggled. Would you?
I got away with my explanation, but that’s because she can only see the good in people. I, on the other hand, went on a painful journey, exploring all these fears, trying to make sense of the determination everywhere to get as close as possible to 100% selective termination rates amongst not only a worldwide apathy but what seems like a general consensus. Who’s to be accountable? The medical professionals with their outdated narrative? The governments who facilitate those selective terminations while failing to provide updated information as well as alternatives and hide behind the magic word: CHOICE? Women? Are they really given a choice and tough for those who don’t agree with their decision?
Or maybe prenatal screening simply reveals the true views society holds towards disability, views that are legally protected and socially accepted.There you have it in full bloom: the conceitedness of the neurotypical, chromosome-typical, sexual orientation typical, able-bodied population! …
The youTube video link of the live presentation is at the end of this text, just like all the other supporting links
“Is it boasting to say I am so proud of my daughter?
Especially when I think back of the day she was born.
I knew the diagnosis as soon as I looked at her. It just did’t matter. She was mine and I was going to be the best mother for her.
Because, isn’t it our role, our duty, as parents, to love unconditionally and to make sure that we bring out the full potential of our children, whatever that may be?
And I have to tell you that I failed miserably, on that very first day, because I was already thinking of all the things I thought she would never be able to do, like read and write, speak French, go to mainstream school, make friends…
And I would whisper in her ears, it doesn’t matter, don’t you worry, we’ll still love you just as much.
And you know what, we would have, but clearly, she had other plans!
But it just goes to show that a mother’s love is not built upon her child’s potential, achievements and abilities or lack of, it just is, and it makes you climb mountains if and when you have to, even if when you look back ,really, they were just molehills
Before I start, I would just like to clarify that I don’t belong nor represent any organisation, which I suppose gives me the freedom to express my own uncensored and probably to many, unpopular, religion-free views.
I certainly don’t have any black and white answers.
I’m not an academic.
My views have been forged over the past 2 decades from personal experience yes, but mostly from observing, conversing with parents of a child with a disability, mostly DS but not exclusively, parents from different nationalities, countries, cultures, some with radically opposed political views, and at different stages of their parenthood.
Also, I would like to stress that I am not against medical and scientific progress and research. What I am against is when their outcomes are subsequently used and abused to exploit the fears of disability and the dreams of perfection.
I am not pro-life.
I am however, very much pro-choice, as long as balanced and unbiased information is given to women/parents who have just received a positive diagnosis, so they can make an informed decision.
And at the moment, we are quite far from it.
So, now that we are, I hope, crystal clear, thank you for having us, we feel very privileged to take part in this conference. You’ve had incredible input from the most wonderful speakers over the past 2 days, spanning all the life stages of individuals with DS, broaching their health, their education, and their potential opportunities in the future. I’m in awe of everything the Federation has achieved over the past 33 years.
And yet, thanks to the mind-blowing progress of medicine, it looks like you’re all gonna be a lot less busy in the not-so-distant future as babies born with DS and soon with any other congenital disability are set to become a rarity and even a thing of the past, like it was all a really bad dream.
Not everywhere mind you, only in countries where
- governments have the means to offer pre-natal testing,
- governments which already have
- all the infrastructures in place
- all the painstakingly-acquired knowledge to bring out the full potential of our people by lessening the impact of disability.
- governments which already have what we would like to believe a positive mindset towards disability through fought-for laws and human rights.
Ironically, 1 out of about 700 babies will still be born with DS in the rest of the world.
- In countries where governments are too poor to afford prenatal tests for every pregnant woman and post natal care for every baby born with a disability.
- governments too poor to have any infrastructure to cater for their citizens with any disability,
- governments too poor to implement the knowledge that the richer philanthropic countries would happily and freely pass on,
- and countries where the display of disability left to its own device will always be a convenient reminder to richer countries that they sure did the right thing.
I don’t believe it’s a sketchy path I’m describing you. It is a very clear one, according to the current and rising selective termination rates in many countries. It’s about 90% in the UK, less in the USA, and here in Spain, for now, more in Iceland and Denmark where we know they’ve almost achieved their goal to be Down syndrome-FREE countries.
However, quite a few of our young people and their relatives are trying their very best to alter the course of that path, so that they are given the recognition that their genetic make-up should not be reason for termination, should not be ground for eradication.
But the timespan keeps shrinking, the deadline (pun intended) keeps being brought forward because of scientific and medical progress.
So what can be done?
It’s not like women can be forced into carrying on with a pregnancy they don’t want. Thankfully!!! Hopefully!!!
It’s not like foetuses will ever have a Right to Personal Data Protection, on the contrary,
it seems they now have a Duty of Full Personal Data Release without having to sign a Consent form.
So, ALL we can do to alter that gloomy path is raise awareness and try and understand the wheel-work behind the alarming and shocking figures of selective terminations rates.
As Kathleen told you, she is now 18, and I’ve always told her she has DS from a very young age, 2 1/2, following the advice of a Speech and Language Therapist.
As she grew up, she started asking me questions ranging from “What is DS“? “Why do I have DS?”. “Do I still have DS?” and more recently “I don’t want to have DS anymore.”.
I think, I hope, we’ve always managed to navigate between being sensitive and yet honest, and still give her answers that SHE can understand.
But basically, she’s always come away reassured that it’s ok to have DS, it’s just different, and we all have something to bring to this world.
But then, something happened.
The NIPT came out. The Non Invasive Prenatal Test. It has a really nice ring to it, doesn’t it? The semantics used seem very positive, reassuring and safe.
At first, it made me sad, I just put my head in the sand and bowed to what has been drummed into us for a while now: “it’s all about choice. The magic word CHOICE, it keeps everybody at bay. Another way of saying: don’t interfere, it’s not debatable. End of”.
One day earlier this year, Kathleen was ecstatic because she had picked up on the words DS on the radio and thought they were celebrating her condition..
Except that they were hailing the NIPT as the long-awaited-for panacea to DS. And they were expecting everybody else to rejoice with them that soon there would be no more people like her in our society. and the majority phoning in to that show reflected that view.
And that dichotomy suddenly slapped me in the face. The dichotomy of what Kathleen had understood and what they had meant.
And I panicked. How long do I have until she picks up on what they mean.
And I guess that was my tipping point. I changed gear. From a regular mum, I turned into to a tiger-mum.
How dare they?
How dare they force me into having to try and explain to my wonderful child that a most extraordinary medical breakthrough will be used mostly to detect and eliminate foetuses with her condition as early as possible (because the earlier , the less controversy) and hopefully if the marketing strategies are run successfully, governments will be eager to buy these tests so they won’t have to deal with what they view as a problem and a drain on their resources, they will simply eliminate the problem at its source.
The NIPT is after all a market that will reach $2.8 billion by 2021 and I quote “untapped emerging markets are expected to offer potential growth opportunities to players operating in the NIPT market during the forecast period.”
In other words, clutters of cells with DS are worth a fortune. Individuals with DS cost a fortune. It’s a no brainer.
How dare they, when I’ve spent the past 18 years convincing her that it’s ok to have her condition?
How dare they, when THEY have spent the past, what?, 40 years slowly but surely building them up to believe that it’s ok to be disabled?
How dare they force me into having that now unavoidable conversation.
I did ask around for some advice but really, it’s pretty much unchartered territory.
It’s not like you can go on Google and type in : “how do you explain to your child without damaging her that the world doesn’t want people like her?”.
So, I gave it my best shot. And the outcome I got away with was:
“Because they don’t know much about DS, Kathleen”.
And ignorance, or distorted reality, is a huge contributing factor to high selective termination rates. But I don’t believe it’s the only one.
I did a lot of soul searching and internet searching.
Why? What is it?
And I apologise if it appears over-simplified but it is only a summary so it would fit in the allocated time today.
To me, there are 4 main contributing factors and all 4 feed off each other:
1/ the perception of what DS is, based on outdated information that stick to our collective memory like super glue, and the fears rising from this
2/ Medical and healthcare professionals: their narrative and the fears rising from this
3/ the governments and their standpoint regarding screening and particularly the NIPT, and the fears rising from this.
4/ being pregnant with hormones all over the place, and being exposed to all sorts of tests designed to focus solely on the negatives of your offspring.
Can you see how these 4 factors feed off each other?
1. So, let’s have a look at the 1st one.
It would appear that our collective memory of people with DS, that painting depicting them when they had no access to early intervention, medical care, a loving family, when it was all doom and gloom
that painting has never been updated with today’s bright picture filled with hope, love, inclusion, education and great achievements. And I paint a very rosy picture on purpose.
I deliberately decided to almost ignore the minority of our children who have more complex needs. Not because they don’t deserve to be mentioned, but for the purpose of this exercise. For argument’s sake.
Because very often, whenever we try to raise awareness and showcase, because that’s what we have to do to raise awareness unfortunately, showcase our children, like I did today with Kathleen,
When we showcase our children, the counter argument is that yes but they are not all like that. Bam. End of discussion. Door closed.
First of all, a parent’s love for their child, a family’s happiness, are not inversely proportionate to that child’s degree of cognitive impairment.
What, are we supposed to believe that there are 9 out 10 selective terminations because they might have complex needs??
The majority of patients in hospitals, worldwide, 46 X. Not 47
The majority of patients in mental institutions, 46 X not 47
The totality of criminals, alcoholics, drug-addicts, paedophiles, money launderers, crooks, serial killers, terrorists, 46 X, not 47.
And you want to talk to me about complex needs ????
Back to the ugly painting.
It feels like there’s been a glitch in our collective memory. The update has never been downloaded.
And we need to understand why.
So, in the past, we, as a population, were convinced by society, that the right thing to do was to institutionalise, for decades, under the pseudo choice:
it’s up to you, what would you rather do, send it to an institution or ruin your marriage, your life and your children’s lives?
Men were the ultimate decision-makers back then, legally and socially. And our main source of information was our family doctor.
Today, we, as a population, are being subtly led to believe by society, that the right thing to do is to have a selective termination under the pseudo choice: it’s up to you, what would you rather do, have an early and safe termination or risk your marriage, your happiness and your family’s happiness? Women are now the ultimate decision-makers, legally and socially. Our main source of information is the internet, social media, and our medical professionals.
We’ve witnessed huge progress in the medical field (NIPT), huge change in the legal system and the tenants of bioethics (abortion is now legal and socially acceptable), huge progress in society (Women’s right to vote, rights for people with disabilities, the advent and revolution of the internet and social media).
And yet, incredibly, or predictably, the end results are the same, the script , the narrative for our main character, our “it” with DS hasn’t changed, it’s just been shifted .
It’s just that instead of 9 out of 10 babies sent to institutions, there are 9 out of 10 selective terminations on the ground of DS.
Instead of having a baby to deal with, we now have “only” a clutter of cells.
And the course of action differs dramatically depending on the location of that main character: in-utero or ex-utero.
And the safe zone/danger zone of the entity with DS, have been subjected to a straight swap
Bear with me:
The safe zone used to be in-utero for 9 months.
The safe zone is now ex-utero. No more institutions. Access to medical care, to education, inclusion into society and in most cases to a loving family.
The danger zone was ex-utero with the near certainty of a short and miserable life in an institution.
The danger zone is now in-utero with a high threat of destruction within the first 10 weeks of gestation and even up to the point of birth because it is considered as a severe disability. Don’t know in Spain but certainly in the UK and France.
It would appear that the main rationale behind the past “mercy” institutionalisations, and the current “mercy” selective terminations, across cultures is that DS has been systematically synonymous with
PUNISHMENT, BURDEN, SUFFERING, RIDICULE, SHAME, EMBARRASSMENT, A THREAT TO YOUR MARRIAGE AND A THREAT TO YOUR EXISTING OR POTENTIAL OTHER CHILDREN’S HAPPINESS.
I’m sure you can add to the list.
But in other words, they were/are dehumanised and that’s when fears set in.
Except that back then those fears existed in spite of the fact that there were no studies conducted to support such claims.
Except that today, those irrational fears persist in spite of the fact that there are studies conducted to debunk such claims and for some reason, they are not reaching our psyche…
Except that today, those fears persist in spite of the fact that we have the power of social media with countless stories that get shared all over the world, within our DS community, and every now and then a few of those may reach the digital screens of the population at large, the outsiders, and they’ll go, awww how sweet, how wonderful…
So what are those fears?
There’s the fear of a life of suffering:
Which was most probably true for the vast majority of them! Who wouldn’t suffer without love, without medical care, without purpose, without validation?). We now know that the only time they suffer is when they are poorly and every time they hear people like them are not wanted. Nearly 100% of them are happy with their life, and with the way they look, thank you very much. I don’t think we’re anywhere near that for us people with 46X…
Problem: who believes that? Who will read those studies? Unless you are very active in the DS community and don’t need to read these studies because you already know all about it?
There’s the fear of having a child for life and a life-long burden for the siblings
For the one out of 10 who wasn’t sent to an institution, that was probably the case. But nowadays, there are infrastructures in place such as assisted living for those who are able to live independently, semi-independently, and even for those with more complex needs.
And surprise surprise, most siblings want to play an active role in their sister/brother’s life after their parents’ death.
But again, unless you are in the DS community, you are not aware of such infrastructures.
Fear that only exceptional people can be parents to a child with special needs.
One of my favourites. Nonsense.
I don’t think many of us jumped out of our seats to shout Yes, please, I’ve always wanted to be a mum to a child with special needs. I know just how to be that parent.
You just step up to the plate of parenthood, you don’t step down that plate or hide under it
There is no FIT-FOR-ALL PARENT TEMPLATE because Every child is special and every child is different. And you just naturally morph into the kind of parent your child needs, regardless whether that child has special needs or not, it’s irrelevant! It’s actually that simple!
Problem: You know what I mean. Nobody else does.
There’s the fear of short life expectancy:
Well they did have a short life expectancy: they didn’t have access to medical care, mind you. Fast forward to today, now they have won the right to have access to medical care, most of them have a long and healthy life. No less healthy than a person with 46 chromosomes.
Problem: who is aware of that fact unless you are in the DS Community?
And there’s the big one: fear that it will greatly reduce your rightful share of the happiness cake, and that the filling will be a lifelong misery:
In other words, we can’t cope with children unless they’re perfect? Perfect, in a medical sense of course, (for the record, to me, all 3 of my children ARE perfect, but I’m being the devil’s advocate here and I use the word perfect in the medical sense).
Our marriage/partnership won’t last unless our children are perfect?
Siblings will be ok as long as they are all perfect?
If you think your marriage/partnership won’t last because your children are not perfect, you may be right. Our children are very good at highlighting cracks, but they don’t create them. So if you’re worried your relationship won’t withstand challenges, maybe you should worry about your relationship.
But I will state the not so obvious, divorce rates are lower in families who have a child with DS than those who don’t. And next time your doctor tells you “think of your marriage”, tell him/her that divorce rates are much higher amongst the medical professionals than amongst families with a child with DS.
If you’re worried about the existing siblings or the future ones, know that they actually develop into adults with greater compassion than adults who didn’t have a sibling with DS.
It may come as a surprise but most families with a child with DS are very happy thank you very much,
and most parents say they wouldn’t change a thing about their child with DS and all learn so much from that child.
Look around you, are families who don’t have a child with DS happier than us? NO
Are families who have a child with DS less happy than those who don’t? NO
The problem is: unless you are in the DS community, you would never actively research that kind of information. You would never know.
And then, there’s a new fear which is the product of all the other fears: There’s a fear of not being able to go back to work, ever.
And yet most of the mums of a child with DS that I know are working mums, and I know quite a few, and some are even single mums.
I’m in the minority.
Problem: Who is aware of that?
You could probably add to the list of fears, but you can already see why they still have a long way to go before they are alleviated.
You can already see why they spring to the forefront of our memory when suddenly confronted to the diagnosis?
You can already see why it’s gonna take a long time to change that painting on the wall, never mind the writing.
Because the update I was telling you about is not an automatic update, you have to go and look for it and why would you unless you have to?
You don’t say, I’m bored today, I’m going to search the internet and see what’s up with DS.
When there’s a post on FB or Instagram or TWITTER about Prader-Willis syndrome or Williams syndrome or whatever, what do most people do? Scroll down.
And if you were not involved with DS for whatever reason, you would scroll down too. Actually, you and I wouldn’t be here today.
But those who don’t scroll down, say we are in denial, that we only share the good bits. We can’t win. If we share the bad bits, that’s all they focus on and they say: “See, that’s DS for you!”
You can see why I didn’t bother mention all the studies conducted by brilliant individuals with great credentials from great universities and hospitals that debunk all these fears.
Most of them by the way, led by the wonderful Dr Brian Skotko from the Massachusetts General Hospital. Thank God for the Americans, the only ones to get the funding for this type of studies! I do have the links for those interested, though.
It doesn’t matter that all our babies who manage to slip through the many nets of screening and diagnostics tests prove every single one of their parent’s fears wrong.
Nobody wants to hear it.
Which brings me to my 2nd contributing factor:
2. Medical and healthcare professionals: their narrative and the fears rising from this
By the time of the prenatal diagnosis, the only people we’ve been dealing with really, are you, medical and healthcare professionals;
And that’s when I cast the first stone, at you. But if I can put it this way, it’s a stone wrapped with love.
Because more than likely, you never went to school where a classmate had DS,
More than likely your professors at university didn’t have much to say about DS that was positive and whatever it was, it was only medical, Actually, just 2 weeks ago, on a BBC Radio 4 interview, Kari Stefansson, one of the world leading geneticists, said that when he was at medical university, the goal was to one day be able to screen for DS in order to eradicate it from Iceland, and it’s pretty much job done.
More than likely you will only ever be involved with people with DS and their parents when there is a crisis,
namely at the point of diagnosis, pre-natal or post-natal, when most parents are devastated,
You won’t get to see them 2 months, 2 years down the line and see the complete turn around of these parents and how grateful they are to have their little one.
Some of you will only see them when there is a medical problem and parents are understandably totally stressed out,
Healthcare professionals, you will see parents at the point of therapy when parents are stressed out because they have to juggle busy time-tables,
and all of that contributes to shape and comfort your negative perception of what it’s like to have a child with DS.
When would you ever get a chance to interact with a family who has a child with DS and witness that actually, day to day, they’re pretty much like any other family.
You will never get to witness and that’s a blessing, the daily and genuine “you’re so beautiful Mummy”, with my make-up running down my cheeks and my hair sticking out, first thing in the morning
You will never get to hear the genuine 50 times a day “I love you, daddy”
You will never get to experience the tight hug, full of love that we get 100 times a day, as if forever grateful to just be alive and content.
So, you are unwillingly and to some degree, unknowingly kind of stuck into a time loop, a vicious circle, and your scope of perception is seen through , no offence, tunnel vision due to time constraints (you only work 15 hours a day and dealing with many more diagnosis than DS) and legal constraints (you may run the risk of a lawsuit if you don’t give the worst case scenario).
And so again, at the time of pregnancy confirmation, the first time you are meeting with parents-to-be, and it’s straight away time to have the NIPT talk, the screening test, not so much to check that everything is ok with their child-to-be but rather that there’s nothing “wrong” with it…
And then you see them again at the time of positive results, prenatal or post-natal.
Although you are supposed to be as neutral as possible, you might subconsciously relay the negative bits of what you think life with a child with DS is, , through your facial expressions, your body language, the tone of your voice, the terminology you use, .
Don’t underestimate those, you know that patients always try to read their doctors, to read between the lines.
and of course you will have to run through the list of medical problems that their child might have or develop later.
That was the love.
Now here’s the stone:
Because prenatal screening tests and diagnostic tests have become so routine and have DS as their primary target, I would hope that you are prepared by providing parents-to-be documentation with updated information about DS, suggestions of local support groups, suggestions of support websites
and not automatically assume parents will want to be rushed into a selective termination as so many are.
3. Which brings me to the 3 third contributing factor and The second stone I’m going to throw, with a bit less love than the first one: The governments
They’ve been fantastic at providing more and more rights to our children, but at the same time, they are really pushing for prenatal tests under the pretence that it’s a woman’s right to know and a woman’s right to choose but not providing them with balanced information and therefore potentially influencing her decision-making process towards selective termination.
I don’t know if you have ever heard of a state-funded health care system anywhere in the world (which i believe most are in deficit) that will spend (I would rather use the word invest) millions of whatever their currency is, on tests that will allow the luxury of knowledge for pregnant women to just know and prepare for whatever outcome? Have you? Me neither.
Why on earth would they spend millions they don’t really have, on providing free screening tests if it didn’t have a R.O.I. (Return on investment). That ROI is to get as near as possible to 100% selective termination rate.
Which is millions for each country saved in health care
by not having to provide the support that our children would have otherwise needed throughout their life.
It’s also money saved on less time-consuming, invasive, risky and costly diagnostic tests.
In the Netherlands, one of their national newspapers recently published an article on how much DS is costing society, tax payers. Why?
In France, the video “Dear Future Mom” featuring young adults with DS from different countries talking to a fictitious woman pregnant with a baby with DS. And these young adults reassure her.
It was banned from being aired on television on the ground that it could “disturb the conscience of women who, in accordance with the law, have made personal life choices.” How does that even make sense?Did they look too happy and able and made these women feel guilty?
What does it say to all the concerned individuals who are already amongst us and those who will accidentally make it into this world?
Will they have to make sure not to look too happy, not to do too well in life, so these women’s conscience are not disturbed????
What does it say to us, parents? Should we all look terribly depressed and unhappy in case we disturb a conscience?
What is the agenda?
4. And that’s when I bring in the 4th contributing factor: the pregnant woman, the pregnant parents.
You’ve all heard the phrase “A mother’s love is unconditional”. And when used, that phrase always has the same very positive tone to it.
Unconditional love means you love that child no matter what, which actually means IN SPITE OF the challenging bits rather than THANKS TO the rewarding bits.
What is happening today, is that parents-to-be are subliminally conditioned to expect that it doesn’t have to be that way. Your love won’t have to be TESTED BY and SUBJECTED TO the challenging bits anymore.
Society is slowly but surely teaching us to love unconditionally yes, but only once that clutter of cells has proved that it won’t have built-in challenging bits.
We now have the opportunity…or the curse… or the illusion to produce “DESIGNER BABIES”.
And we now have the opportunity… or the curse… or the illusion to be “DESIGNER PARENTS”.
A pregnant woman has got all sorts going on in her body. She is naturally anxious in that state.
And she is put on a now accepted-as-routine conveyor belt of all sorts of tests, at each doctor’s appointment, and her brain is fed words like “disorders, anomalies, test, prenatal, screening, risk, diagnostic, learning disabilites and so on…
Screening tests are “sold” to pregnant women as a tool for a PREPARED, CONFIRMED, INFORMED, PREGNANCY.
Which means if you don’t take the NIPT, you may not be as well prepared, as well informed.
Screening tests are sold to pregnant women as:
“A SIMPLE BLOOD TEST, PEACE OF MIND, EVERY MOM DESERVES TO KNOW ABOUT HER BABY.”
Not only is it all very enticing and seemingly innocent, but women are almost made to feel guilty and irresponsible with that kind of wording if they refuse to take those tests.
and then suddenly, she is faced with a positive result.
All the alarm bells ring all at once. All 4 contributing factors kick in, full force.
She is asked to make a life-changing decision without much time to think about it. And chances are she won’t have time to download the full update before she runs out of time to make a decision.
Again, the earlier the test, the less time the mother has to bond with her offspring in case of a positive diagnosis, the better the chance of termination.
She doesn’t hear those words from just her doctor, but also from her family, her friends, “Did you have the test”,
and sometimes from her partner, who is not connected to the offspring in the same way as a woman is, obviously, and who may be therefore more inclined to offer a pragmatic reasoning. Again, increasing the chance of termination.
She’ll be told you can think about it but a termination can be arranged within the next 48 hours, even 24 hours.
But if she wants to think about she is rarely given a positive alternative.
Although it’s all about choice, it seems to me that everything is to be geared up towards what is perceived as the “right” decision.
Because when people ask, what do you want, a boy or a girl, we usually say, “I don’t mind, as long as it’s healthy”, what we really mean is:
“I don’t mind as long as it’s disability free, especially cognitive-disability-free”
I did tell you in the beginning that I didn’t have answers.
Sometimes it all looks like a big plate of spaghetti.
And I am not here to judge the 9 out of 10 parents who chose/choose a selective termination. I’m sure they’re all really nice people.
I am trying to understand it because I don’t believe for one second that all 9 knew/know about the above 4 contributing factors.
A mum whose daughter with DS slipped through all the prenatal tests (she’s now 2, and has proved every single one of her parents’ fears wrong), that mum recently told me: “if someone like me, caring, intelligent, educated, could’ve done the unthinkable (had her daughter’s condition been picked up by any of the tests), then what hope do we have?”.
It seems that right and wrong keep swapping places depending on where you are spiritually, geographically, culturally, morally, legally, medically, scientifically and historically.
And those are quite often either out of synch with one another or at loggerheads.
And my hope is that, this generation and the one busy growing up now, are playing the lead role in demonstrating to those who will soon be in child-bearing age, that DS is actually nowhere near as bad as some entities want us to believe, that there’s actually a lot more to rejoice over than to fear and worry about. And those future parents who will be confronted to all sorts of increasingly accurate and increasingly targeting prenatal tests , may be the ones thanks to whom selective termination rates will start reflecting a more balanced perspective.
But my worry is, scientific progress has always been a precursor of a shift in the moral fabric of a society and sometimes, it exposes its true colours.
And I wonder and fear that the NIPT has unveiled the true views society holds towards disability, views that are legally protected and socially accepted.
I wonder and fear that the NIPT
exposes the arrogance of the typical population to believe that they have the monopoly to establish the rules of what is and what is not worth living. And I said What is and What is not, instead of Who is and Who is not, because clutters of cells are not recognised as persons.
The truth of the matter is, we are not afraid of DS per se, we are afraid of what is DIFFERENT, we are afraid of cognitive disability, we are afraid of anything that is not sound-minded or able-bodied.
There you have it, in full bloom: the conceitedness of the neurotypical, chromosome typical, sexual-orientation typical, able-bodied population!!!
We actually think we are the only ones who can enjoy life to the full. And we’re right!! People who are different will find it very difficult to enjoy life to the full without the help of the able-minded, able-bodied people. Our help. So they are held hostage to OUR goodwill.
But it would appear that the typical population is not ready to help anymore and take comfort in believing that they are being merciful in preventing people who will be “different” from being born thus allowing themselves to live fully, unburdened, or so they think….
Forgetting no doubt that if the units of measurements for life worthiness were empathy, resilience and aptitude to happiness, our children would be on top of the list, not at the bottom as they are now.
As a conclusion, Wouldn’t it be awesome if by the time women are pregnant, the update had taken place, the narrative of the medical professionals wasn’t so biased anymore, the governments stopped trying to carbon-copy themselves on business models, then, instead of having 4 contributing factors, we’d only have one: A REAL CHOICE and much lower selective terminations as a result.
In the meantime,
to all the shareholders in the manufacturing companies of pre-natal tests, I would like to invite you to get up from behind your labs and profit margin calculations,
to all the top decision makers in our governments, I would like to invite you to get up from behind your desks,
to all the haters and the trolls, I would like to invite you to get up from behind the anonymity of your high-speed and vaseline-covered keyboards,
and come, come and meet our people and tell them to their face, what crime they are committing that you keep targeting their condition,
and tell them to their face, and these are the key words, to their face, why you believe that the world would be a better place without them in it.”
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37520/full – Dr Brian Skotko Study first published in Dec 2015
http://www.bbc.co.uk/programmes/b006qnbd/episodes/downloads BBC Radio 4 with Kari Steffanson, one of the World Leading Geniticists, sid when he was at medical university, the goal was to one day be able to screen for DS in order to eradicate, and they’ve finally managed.