I have just been called ableist because I support antenatal screening

[noideawheretostart]

And I'm so blind sided by it that I don't really know where to begin with how incorrect that statement is.

Something like 85% of those afflicted with Downs syndrome are aborted. What does this say about us as a society, about what and who we value?

SylvanianFrenemies has already shared her very painful experience on this showing that it isn't as simple as not wanting a disabled child.

But I would like to just explain why there's a problem with a bland statistic like that. It is misleading because (without being given any further information) almost everyone who hears it will think of the smiling, friendly children now in our schools, many of whom will grow up to live independently or semi-independent, fulfilled lives as adults.

However, these individuals represent the best outcomes for those with Trisomy 21. When we didn't have screening, there were far higher numbers of extremely disabled Downs Syndrome sufferers, who never learned to sit, walk, talk, use the toilet or feed themselves, who never reached adulthood because of serious co-morbid birth defects. Many miscarriages are caused by Trisomies so seriously damaging that they are leading to a fetus dying in utero or at birth.

Currently, around 50% of babies with Downs are born with congenital heart defects. Heart defects can range from non-survivable after birth to survivable with neo-natal heart surgery to manageable, often with a high likelihood of necessary surgery later.

Without qualifying what precise conditions that 85% are in, we cannot draw any conclusions about what this number says about us as a society. It's in my view highly emotive to just put that number out there without providing this context.

CharlieParley I agree.

I think looking at these issues in terms of % of pregnancies carrying a T21 baby being terminated is the wrong way round.

We need to be looking at the % of individuals with T21 and their families that have their medical, psychological, social, support and care and other needs met within our society and working to improve these.

Otherwise, it looks a lot like blaming individual women for social shortcomings.

CharlieParley I have a relative with Downs and I can tell you for sure that our society doesn’t even have the resources to adequately support the 15%, never mind six times as many people. My relative is one of those who is too profoundly disabled to take an active role in society, so I totally agree that what most people see as Downs is actually a self selecting sample of the most mildly affected people.

Thanks for kind words Coyoacan and others.

Oh Somerville, I also completely believe this. Every life is valuable - even given my position and what I believe I would do. It sounds contradictory I know. But I think that's acceptance - that you make a choice, and both are correct. Both are worthy, and right. And no-one gets to make that decision but the person carrying that child.

Letterkenny It doesn’t sound contradictory at all. The more we experience, the more we realise how complex life and loss is and thus that there are no simple answers.
And in my situation there was no choice to make - as with most cases of children who undergo suffering. Personally I’m glad I didn’t have any decisions like that to make, so I have huge sympathy for those who do, whatever they decide.

Somerville

This time last year my youngest (6) was on a ventilator in PICU.

She’s now in remission, thankfully, but it’s been the hardest, and most love-filled year of my life.

I’ve no idea how we ever get back to normal, whatever normal was. I now live with the anxiety of knowing that the worst does sometimes happen, and there isn’t always a way to protect the ones we love.

Sending all that’s left of my strength to you and the other mothers of children with serious illness and/or complex needs on this thread.

Knowing what I know now, would I be without my littlest? Hell no.

Would I judge a woman for not feeling able to live out of a bag at the children’s hospital indefinitely? Hell no.

I think screening is definitely a positive in a lot of ways. I can fully understand that people tfmr out of love, and a desire to avoid suffering for the child. I'm pretty sure I would feel the same in that position.

However, like others have said I also worry about a society where the parents of disabled children are blamed for the disability on the grounds that they should have aborted instead. I think balancing everything is very tricky. And disabled families have so little support already, in comparison to what they need.

Personally I did decline some of the tests offered in pregnancy because I'm in N Ireland and the consultant told me that even if abnormalities were discovered there would be no follow up. Terminating wasn't allowed anyway, and there was no real additional support available if something out of the ordinary showed up. It would have been a case of being handed a leaflet to read. So I didn't see the point.

I have several disabled DC all with the same genetic condition.

They all say at the moment that they don't want children of their own, but if any of them do, they will absolutely be having screening (there's a 50% chance of passing it on).

It has been hard enough for me raising then with their complex difficulties, and I wouldn't want them burdened with having to deal with a baby with serious health conditions on top of their own disabilities. Why would they put themselves through that given the choice?

OP

I got called ableist on twitter for stating I have a disability. I'm not sure I can work that one out.

I do have quite a few medical conditions, I wish I had not been born. That's not something I type lightly, I just don't think the world is any better from me being here and if I had not been born I wouldn't know.

It's reasonable to believe that screening is ableist if you also believe abortion is murder. If a foetus is already a person then a foetus with a congenital disability is already a person and selectively choosing abortion on the basis of whether or not the foetus has a congenital disability is eugenics and ableist.

I don't believe a foetus has personhood like that. I respect the rights of others to believe differently and an glad we live in a country that allows each of us to make our own decisions.

If a foetus is not a person and a woman has personal bodily autonomy to chose what happens within her own body, then a woman has every right to establish conditions for herself about under what circumstances she is happy to continue a pregnancy. If it's valid to choose not to continue a pregnancy for other reasons eg that her financial circumstances are currently insufficient, or that she doesn't want to be locked into a parental partnership with the man she was impregnated by, then its certainly equally valid to choose not to continue a pregnancy if there is a much higher than otherwise chance that the eventual child would have significant additional care needs.

I think you need to categorise this person's opinion that screening is ableist as the same as a person's opinion that abortion is murder - they have a right to believe it but no right to impose their morality standards on you, so do not let it trouble you.

Women's bodies, women's choice. The fact is, once a baby is born, when it is actually alive, no parent is required to donate even a single drop of blood to keep a child alive. So women should not be forced to donate their whole bodies to be hosts. It is their choice.

Something like 85% of those afflicted with Downs syndrome are aborted. What does this say about us as a society, about what and who we value?

I kind of hate the way the debate around screening always seems to boil down to “but isn’t it terrible that most pregnancies with Down’s are terminated?” I also think the Down’s debate gets muddied when people talk about adorable young children they know. Of course they’re adorable. But it’s not a life I would have chosen for myself. It’s not the life I would have wanted for my own child. And no one talks about adults with Down’s.

Sashh DS sometimes says the same, which makes me wonder about the selfishness of keeping a child for our sake not theirs.

I recognize your name as a long-standing and thoughtful poster, by the way. I know ‘interesting to others on the internet ‘ may be small comfort but it’s one tiny way of making the world better. I suspect you have the same effect in real life without knowing it.

Something like 85% of those afflicted with Downs syndrome are aborted. What does this say about us as a society, about what and who we value?

Down syndrome is just that, a syndrome. Not everyone with DS is verbal, is continent, is able to live independently. Deafness and blindness are common.

One feature is congenital heart disease which can be something simple to repair with an operation or can be incredibly complex and not able to be treated.

People With DS who live past 40 often develop alzheimer's disease.

It's not as simple as DS = abortion, not every feature can be picked up on ultrasound but may can.

Your right abut issues associated with ds . But didn't the oldest man. not sure if in uk or world but man with ds just celebraed his 78th birthday, and was looking very happy about it. He looked like he had a quality of live. Having worked and shared accomodation with people with DS and having a nephew I am very sensitive on abortion for that reason alone. some poeple abort babies with spina bifida, but i have worked alongside a coleague with that condition, married, foster mum, nursery nurse. We need to draw the line somewhere. You can even abort for a ceft pallet late on which is an operale condition.

june2007 You surely have to realise that holding up one or two examples of people with high functioning DS is absolutely not a reason to degenerate women who may terminate a pregnancy with DS - as PP have said, what if they have a serious congenital heart condition? What if they end up being extremely low functioning?

As PP have said, benefits and support for families with extra needs is shit in this country. Are you honestly saying that women are duty bound to give up their job, lose their home, worry about feeding their children... because you know of one man with the condition who lived a full and happy life?!?

I don’t think it’s all black and white but holding up the best case scenario and ignoring the very real possibility of the worst case scenario isn’t doing anyone any favours.

@june2007 I personally wouldn't throw the dice on my child's quality of life. You can say you know a happy healthy person with Down's syndrome.

I know one who died at 1. One who will never live an independent fulfilling life.

Instead of looking at the pregnancy. I choose to see each individual woman making an educated informed decision.

I guess some of this is trusting that women, who will absolutely have the ultimate caring responsibility for a child, should be able to make compassionate and thoughtful decisions.

Then there is us as a society drawing some lines, which I too think is necessary for example not choosing on gender alone for example. I think both are vital and both are complex.

@sashh I think your views are poignant and important. I think the term ableist gets thrown around too much without thinking about what it really means, and sometimes makes the debate very crude. If it’s over used it becomes pointless.

I think even the “choosing the baby’s sex” thing gets massively clouded - the women making these decisions will often be under significant family and cultural pressure to do this; and we need to focus on tackling the underlying societal problem; not demonising individual women for making a “choice” that, for them, often isn’t really a choice at all.

The reality is that disabled foetuses are terminated for their disability. Is that ableism? I think that depends on your stance on when life begins. Obviously if you don’t consider a foetus human life then it can’t be. If you do then it’s not really any different to euthanising a disabled child after birth.

If you are in the latter category then the question arises does enabling medical techniques which some people use to commit ableism in itself ableist. My view is that it depends on the rates of termination and additional medical utility. Given that some medical screening techniques serve additional functions (like a sonogram) it’s not ableist to support those. With regards to pure screening techniques like NIPT I think you need to look at the abortion rates. If most disability positive pregnancies are terminated, and you believe that the child is a human being then yes, I suppose it’s ableism.

People who are against screening or terminating don't know what they are talking about. They think that disabled people are just those high functioning happy adults with some kind of learning difficulty making muffins at the next shop. They don't see a child suffering and in pain waiting to die in a hospital after literally (and I mean that literally, not as an incorrect figure of speach) 51 operations in their first year, only been home for a few days and half the time are not allowed to be touched or held by mum because of danger of infection. I wish I was making that example up, I'm not. (It's also not me though)

People who are against screening or terminating don't know what they are talking about.

Whilst this is probably true in some cases, in many others it isn’t at all. EG as a disabled woman who doesn’t want to screen or terminate for her own condition and I’m sure many of us had a friend in that situation. I certainly do.

None of this is easy or simple so sweeping generalisations - on either end of this - are not going to be accurate or helpful.

Without qualifying what precise conditions that 85% are in, we cannot draw any conclusions about what this number says about us as a society. It's in my view highly emotive to just put that number out there without providing this context.

But you've gone ahead here, like many others, and talked about individual choices, rather than the meaning as a society. It's like any kind of action that takes place on a wide scale, you can't simply put it down to individual choices without looking at what the wider pressures and underlying beliefs are.
It's not dissimilar in some ways to widespread abortion of girls. There are very understandable reasons why, in some cultures, individual women and families make that choice, it makes a lot of sense from an economic perspective. Sometimes they feel they have no choice because they simply cannot afford to do what is expected for more girl children, or their futures will be insecure without boy children. Those are serious considerations for a family, but they reflect bigger problems - strongly embedded traditions and culture that mean families have economic burdens they can't cope with, and that care of elderly parents depends on sons, along with a cultural preference for boys. Together, at the level of population, these kinds of things mean talking about these as individual choices is a shallow analysis.
Our culture inadequately supports families with disabled children, and inadequately supports disabled adults. We struggle with putting money into health care generally, but not, really, because we are a poor society. We tend not to value those who don't seem to measure up intellectually or who can't fulfil our idea of success - we say we do, maybe even think we do, but that's not what we see reflected in our culture, people are very aspirational about children. We are very uncomfortable with death and tend to want to avoid it in a way that is not always healthy, we have a very definite set of ideas about what counts as a fulfilling life and "short" doesn't really count. Even things like smaller families may be relevant, as it is now in cases of sex selective abortions. We are afraid of suffering.

These things not only push people in a particular direction when they make choices, in some cases unwillingly, they shape us and what we value as surely as those in a society that chooses boys over girls are shaped. It's not just individuals making independent decisions, there are a lot of cultural assumptions about what kind of life is a good life or one to be valued, and that tends to get lost when we just look at it in terms of individuals.