Girl challenging abortion law on grounds of disability

[User273648]

I've name changed for this. A girl is challenging the right to abortion on the grounds of disability as she has Downs. I'd be really interested in opinions.

Personally, I have a cousin who has Downs. She is low functioning (the girl challenging is clearly high functioning as she lives alone supported by carers). My aunt and uncle struggle with it. My aunt admitted once that she had cried for the first two years. They found out at birth. She obviously loves her daughter but given the choice of the same child not having Downs' Syndrome she would wish for that.

Obviously this a very sensitive topic - I'm not intending to upset anyone...just listen to other points of view.

YABU - the law should be changed so it's equal regardless of disability
YANBU - the law should stay similar to how it currently is.

www.dsrf-uk.org/downrightdiscriminationcase/

@MintyMabel

Well said!

I don't see how it can possibly be easier to argue if she is basing her case on discrimination. As I understand it, in effect she is saying that the current rules imply that people with DS are somehow less deserving of life. Surely that applies irrespective of the stage in pregnancy when a termination happens?

In most countries, a fetus has rights upon the point of viability, set at 24 weeks here. You cannot abort a developmentally normal fetus after that point. Yet, a fetus diagnosed with Downs Syndrome will never have these protections, so there is a case for discrimination here.

My best friend had a very late abortion. Think she was 35 weeks.

Her abusive cunt of a husband had kept her locked in the house without any contact with the outside world. With help, she managed to get away from him but hadn't had any scans or such. The baby had Edwards syndrome.

Then why would parents in a rich country like Denmark or Iceland largely choose to terminate their child?

Because attitudes to people with disabilities are horrific.

So even if the UK could provide enough funds and solid respite care, parents still largely wouldn’t choose this for their families.

There is a difference between not choosing it (we didn’t choose it either) and suggesting children with disabilities are something other than “best”

My sister would not be capable of doing any of this. She is nearly 40. She communicates perfectly well but my mom still has to bath her, wash her hair, prepare all of her meals, run her finances and clean her up every month when she starts her period.

On a day-to-day level, where are the pro-lifers when children with DS grow into adults with life-long care needs?

It’s almost always the women in the family who are carers as well. Why is it taboo to admit that being a life-long carer can be fairly shitty at times and that, if given the choice, you’d rather not dedicate your whole life to it?

People with no knowledge of DS have such a sickly sweet view of them.
Many also have autism and severe LD. Often physical disabilities mean they are wheelchair bound.
They grow up and change from the cute little toddlers portrayed all the time in SM.
It's often a life sentence for parents dealing with physical exhaustion, mental stress and worry, agonisingly over what happens to their child when they're gone.

@Phoebesgift this! And the knowledge that if your child outlives you that they will end up in an underfunded care home somewhere.

But disability, like people, come in a spectrum... some could be very high functioning and some not, and the ones that are not, how can we say they are not happy.

Anyway, disability or not, that is still your child.

But I do not agree with banning abortions.

Because attitudes to people with disabilities are horrific.

Comments like this demonstrate how little of a clue many have on the realities of being a parent to a child with DS, severe LD or ASD.

When people choose to become parents they consider where the child will live, which school they will go to, how they will manage early years childcare and work, and what the impact on their career will be. Caring for a child with DS can change all of this. Their needs may be beyond a nursery or childminder, so the parents need to find a way to pay their rent or mortgage on one income. Special schools do not offer after school clubs, so one parent needs to find the holy grail of very flexible work, or accept being a full time carer for at least 20 years. They may need to make incredible compromises for wider family commitments, holidays may become difficult for decades, and they may need to be prepared to cope with challenging behaviour. The child may be unfortunate and have life limiting heart problems. And then there are other siblings to consider, as they will need to make huge compromises too. My lovely DB has severe ASD, and as much as I love him some aspects of my childhood were bloody difficult and (at times) quite traumatic.

Yes, you might get a child who can attend mainstream school and live independently. But parents can only use the information that is available to them at the time to make a decision.

It’s almost always the women in the family who are carers as well. Why is it taboo to admit that being a life-long carer can be fairly shitty at times and that, if given the choice, you’d rather not dedicate your whole life to it?

In our family’s case, our ‘Dad’ emigrated to South Africa over a decade ago with his new wife. He hasn’t spoken to my sister in nearly 4 years. He will not be around to care for her when my mom dies - despite him being far more healthy than she is.
I absolutely agree - it’s perfectly understandable to not want to devote your whole life to caring for another human being to this extent. And if you have a child with a disability such as this, it’s not just your life you are affecting but any existing or future children you may have.

People with DS also have severe physical problems and not 'just' varying degrees of heart conditions.

• Congenital vision and hearing issues up to complete loss of either or both senses
• Gastric problems including congenital malformations like atresias, where sections of the GI tract are effectively missing and hernias.

-Malformed vertebrae - possibly leading to paralysis and/or death

• Epilepsy
• Thyroid problems
• Autism
• Early onset dementia
• Lung disorders which tend to be associated with congenital cardiac issues

Being born Downs is a lifetime of painful conditions, which simply get worse over time or require painful and distressing surgical interventions.

I agree gimme, which is why I think we should leave our current abortion law well alone as it works currently as a reasonable compromise.

My lovely DB has severe ASD, and as much as I love him some aspects of my childhood were bloody difficult and (at times) quite traumatic

I totally get this. While my childhood wasn’t traumatic as such - I was la DH Ely left to my own devices. Bordering on neglect sometimes as nearly 100% of my mom’s time went to caring for my sister. My dad was beyond useless apart from working full time. I do think this has had a detrimental effect on me to some extent.

I have a 2 year old with no plans for more children. But I was to fall pregnant, and that baby had DS I would (with a very heavy heart) choose to terminate. Even if I didn’t find out until after 24 weeks. I wouldn’t put my DS through that.

*largely left to my own devices

So because she is high functioning she thinks every person with Down is like her and therefor the law should be changed?

The arrogance of this POV is downright sickening and the people that are using her to force their agenda down other women's throat are clearly wrong.

Gimmecaffeine I agree with all your points. Parents of children with disabilities, do go "beyond" the aspects of parent. But if you love your children, you will do this regardless and it becomes your new normal.
But you need to meet the parents I know, they really do fight for their children, their children attended private schools or schools which are dedicated to their needs, some take advantage of what disabled children are entitled to and use the money to fund therapies, to improve, essentially, their quality of life.

Some parents get funding and they can use that money to hire a nanny, carer, to enable them to go to work. Some parent figured- long term, that their job may not be practical due to caring needs, and some retrain, and some negotiate with their employees for part time roles but a vast majority are full time. But I am just about to finish my Occupational Therapy degree and I was just offered a part time job, a few weeks ago, at a clinic which is very close to where I live. I was working in a very demanding job that I knew I couldn't do long term if I had kids anyway..But I am aware that some parents are not that fortunate, some have English has an additional language and they get lost with all the jargon that professionals throw at them, some are dealing with their own personal
Issues or have needs themselves and some parents are just shit.

I know nothing about DS, but painting disability is all doom and gloom and that all parents of children with disabilities must be living shitty lives, without taking into account that everyone's experience is different, is just a bit annoying frankly.

I have a 2 year old with no plans for more children. But I was to fall pregnant, and that baby had DS I would (with a very heavy heart) choose to terminate. Even if I didn’t find out until after 24 weeks. I wouldn’t put my DS through that.

I feel the same way. It would break my heart to see my DD have a similar childhood to mine, and she would, because my parents really did do their best. I'm also aware my DB's care will pass to me at some point, and I genuinely don't think I could cope with a disabled child/teenager/young person and my DB.

I have just realised my earlier comment was assuming there were two engaged, reliable parents. There might not be. It will sometimes be a lone pregnant woman who has to consider if she will give up her career to spend the next (minimum) 18 years on carer's allowance

I am a lone parent Gimme.

Please do not take your life for granted, even a child who seems neurotypical when born, may actually have an underlining learning disability, Autism (as you can't detect it in the womb) or have an expected Stroke or parents who find that their own parents have onset dementia, motor neurone disorders, and they have to juggle their care as well as caring for their own family.

I know this sounds cliche, but when life throws you lemons you have to make lemonade.

@givemecaffeine
Special schools do offer after school clubs, get your facts right or at least some of them!

@buildingbridge
Well said!

I agree with above posters.

I have two children already and if I were to fall pregnant with a child who has DS, I would terminate.

buildingbridge fortunately under UK law you can choose not to have the lemons. You may wish to make lemonade, but you do not dictate that the rest of us should.

I remember reading on a similar thread about a poster who had an extended family member with DS. The relative was in late middle age, parents were long dead and the most recent carer was in their seventies and not likely to be able to look after them for much longer. All of the nieces, nephews and cousins of the relative with DS felt distant enough to say, "they aren't my responsibility", and so it looked like they were going to end up in a care setting.

That's the reality for a lot of people with such disorders, and at least that person had a sibling who provided another few decades of care at home- sometimes that's not the case and they are completely alone. It must be a level of worry for a parent completely beyond most of our comprehensions. I wouldn't continue a pregnancy knowing that that was a likely outcome for my child.

People have sensibly pointed out that a couple may continue a DS pregnancy, but might reevaluate when a later scan throws up more physical issues that will alter their family's future yet again. Removing access to terminations and forcing people to have children they can't cope with or resent can only be a bad thing for everyone involved.

Terminating due to a diagnosis and carrying on the pregnancy are both brave choices. What I would like is for people in the second group, or who receive a diagnosis at birth, to have access to support, resources and respite if and when they need it. Sadly we're far off the mark with that and it will take time, masses of investment and a huge culture shift for that to change. What purpose does it serve, stretching already limited resources to provide help to those who would have chosen to end the pregnancy but for this proposed change in the law? Will the families caught between law change (if Heidi succeeds) and increased investment/support/respite just be collateral damage?

@buildingbridge you agree with my points but think what I said is a bit annoying? Some people will be able to adjust, others won't. Disability isn't being sentenced to a shitty life for everyone (or even most), but it is for some people - certainly if your coping or interpersonal skills aren't 100% to begin with.

I totally hear you about not taking my life for granted. We know ASD is at least partially inherited and we're between watching our toddler DD like a hawk and trying not to think about it. My childhood had lots of laughter and love but if I had an informed choice I wouldn't have a child with my DB's level of disability.

@Woolybear Ok. Our local ones don't, and my DB's didn't, but well done on objecting to a long post with lots of other points in the most arbitrary way possible.

And having a child with a disability is not all doom and gloom, sure it’s different to how you would want or expect your life to be. I had an early childhood that most people would ever experience or want for their child and I have no disabilities. In a way I’m grateful for it because I feel I am a better person for it and try to live my life in a way that is well rounded, fun and interesting.
I have made many friends from all sorts of backgrounds who I probably would never have met because I have a child with a Down syndrome and I can honestly say I have had a far more interesting and often fun time because of it and so has my child. Yes it can be hard but life is not always a bed of roses.
Of course it’s not the life I would choose, I started off wishing it wasn’t my life but now I wouldn’t change it but I would love to change peoples attitudes.

I am constantly amazed at the strength and resilience of many children with disabilities I have met, many who have health issues associated with these disabilities and they still manage to smile and not moan. They are children with great personalities and strengths and incredibly strong parents.