To think that the world would not be a better place without Heidi *Content Warning - abortion/disability edited by MNHQ*

[bridgetreilly]

Heidi is 24 and has Downs syndrome. She is beautiful and brilliant and very articulate in explaining why the UK abortion law is discriminatory in allowing abortion up to full term where the child has Downs syndrome (and other non-fatal disabilities including cleft palate or club foot), when the standard limit is 24 weeks.

She's not the only one to think that. The United Nations’ Committee on the Rights of Persons with Disabilities’ concluding observations on the initial report of the United Kingdom of Great Britain and Northern Ireland made a key recommendation that the UK change its abortion law on disability so that it does not single out babies with disabilities. However, the Government has decided to ignore this recommendation.

Heidi, along with the mother of a young boy with Downs syndrome, is planning to sue the government for discrimination. She is amazing and I hope she wins.

If HCPs apply pressure to terminate it’s not because because they are eugenecists. It’s because they are the ones who see what happens to children born with severe disabilities and their families.

This is an excellent point I've never considered, but you're right. In the very same week, a GP might see a woman who has developed depression, and stress related illness from years of being the sole carer for a disabled child, consult with another family about whether s/he can help with supplying evidence of disability for their application for more support, see another set of parents on their knees from exhaustion because they haven't been supplied with adaptive equipment for their child, and deal with someone suicidal whose application for disability benefits has been refused.

Then at the end of the week, they might speak to a optimistic, pregnant woman about her test results who is confident she can cope with a disabled child...

And at least at the end of all this, HCPs help support you, whatever you decide. Meanwhile, the pro-lifers lovebomb women until the baby's born and then cut them loose. Whoever heard of an offical pro-life organisation being around for the families of disabled children, 5, 10, 20 years later?

A woman has the right over her own body but once the pregnancy can produce a viable child there are two bodies, two lives and two sets lf rights

Except there aren't. There is one body - the woman's. There is one set of rights - the woman's. And there is one person with a choice - the woman.

So, regarding the siblings, in what way would it not be fair on them?

• Not being able to have family days out
• Not being able to go to activities because of their sibling's needs
• Having to have a parent give up work so having a lot less financial stability in the household
• Having so much of their parents' attention focused on their sibling that there is much less left for them
• Having parents much more tired and stressed than they would otherwise be
• Less contact with extended family if their sibling's behaviour affects how often family can/want to visit
• Not being able to go on holiday
• Pressure to become their sibling's carer when their parents are unable to (plus the effect of this on their own children)

But yes, I'm sure people are only aborting because they want attractive children

I hope she wins, but I doubt she will. Equality is what I want.

No it isn’t, and it’s not what they want either, or the call would be for the law to allow abortions at any gestation.

What they want is to prevent TFMR. They are using an emotive angle to do so, and ignoring the reality that there are demonstrable medical reasons why the exemption is applied where there is a risk of severe disability or serious health risks for mother and / or child.

Meanwhile, the pro-lifers lovebomb women until the baby's born and then cut them loose. Whoever heard of an offical pro-life organisation being around for the families of disabled children, 5, 10, 20 years later?

True. It’s almost like it’s got more to do with controlling women’s reproductive decisions than actually caring about the fetus.

that’s true of any child though.

Different baselines.

With DS the most positive possible outcome is a high functioning child who will need considerable support through life. Throw in potential additional health problems and you can see how quickly this can feel totally overwhelming.

With the amount of pro-lifers there are, who post and protest against later terminations for medical reasons, we should have a huge pool of enthusiastic, principled and caring volunteers who are willing to provide respite care for parents, fundraise for adaptive equipment, run patient transport for the multitude of hospital appointments some children have and generally surround families with support.

Where are they?

Where are they?

😂

So, regarding the siblings, in what way would it not be fair on them?

My week in brief:

• meeting for EHCP annual review at DS1 school
• meeting for EHCP annual review at DS2 school
• meeting at DS2 school to discuss why he was left sitting in soiled underwear for several hours despite either being blindingly obvious that he had shit himself
• called into DS1 school because he refused to get out of the swimming pool after his PE lesson
• late for school as DS1 refused to leave the house
• late for school as DS2 lay down in the street and refused to walk
• had to leave a cafe after DS2 meal arrived with sauce, salad, and a bun after we specifically ordered it with no sauce, salad, or bun. DS2 responded by pushing the whole thing onto the floor, plate included
• trip to the walk-in to have my eyebrow glued when, during the meltdown resulting from the above, DS2 accidentally smacked me with his ear defenders hard enough to split the skin
• OT appointment
• dietician appointment
• physiotherapy appointment
• GP review appointment for continued Movicol repeat prescription
• an all nighter where DS1 slept from 8pm to 12am and then decided that was enough sleep thank you very much. DH had to take the next morning off work so that I could sleep while he did the school run and looked after the toddler

A typical day involves:

• school refusal by at least one DS or on a weekend refusal to leave the house by at least one DS
• cooking separate meals as one DS has a limited diet
• monitoring food intake as the other DS I'd unable to feel full so will eat until he vomits, he will also steal food and eat non-food items
• physio exercises for both
• sensory circuit for both
• OT exercises for both
• lay out clothes for the day in the order that they'll be put on. They both need some degree of help in getting dressed
• help washing and brushing teeth
• help toileting including wiping
• administering of medication (Movicol and melatonin)
• appropriate supervision at all times that takes into account their total lack of risk awareness and poor impulse control (way more complicated than this simple sentence makes it sound!)

I cannot work because they cannot cope in childcare and I cannot find an employer understanding enough to give me the level of flexibility I need. We went through several childcare providers in the space of a few months when DS1 was younger and I would get phone calls at work telling me to come and collect him immediately as he was having a meltdown which was distressing for him and frightening for the other children. Four weeks notice to find a new provider would inevitably follow soon after then the ringing around of provider after provider who would say they couldn't take him on as they can't meet his needs. Having to use all of my annual leave on appointments and meetings, employers are as patient as they can be until you're saying you need every Wednesday afternoon off for the next six weeks for a series of appointments or you're phoning up to say you're going to be late (again) because your child won't leave the house or you're going to have to leave early (again) because your child is lying on the pavement outside school and won't walk for the childminder.

My mental health is precarious. I have anxiety and PTSD, I see a therapist weekly and probably will for quite some time to come. My physical health gets constantly put on the backburner as I don't have time to be ill, I need an operation that I'm putting off and hoping doesn't develop into an emergency situation simply because I haven't got the headspace to plan out my recovery while caring for the boys. I'm constantly tired because I don't get enough sleep. I eat shite, currently averaging around 1100 calories a day which then makes me more tired and more anxious.

Professionals supposed to help you are a mixed bag. Some are helpful, others seem to have taken their role on specifically to be foul to service users. I have been accused of FII. I have been told that their issues are behavioural, that they're just attention seeking, that they'll grow out of it. I've been asked to leave places because of things they are doing including being escorted out of the library because DS2 was verbally stimming, saying a song lyric over and over, and when the librarian told him to stop it he started loudly crying. We once paid £48 to get into a farm centre and then had to leave immediately because DS1 got really upset about the smell and wouldn't leave the ticket office. No refunds, all sales are final. I've had SENCOs tell me that DS1 or DS2 doesn't have this need or that need, despite medical evidence, and therefore doesn't need support in that area. DS2 is currently in a cycle where school give him support for a certain area, decide he's doing really well and so doesn't need the support and they take it away, they then wonder why he's not doing well any more and decide its behavioural so give him various sanctions (e.g , no playtime) while I get to spend lots of time on the phone complaining and lots of time in the office complaining before they finally agree that yes, he does actually need that support.

In amongst all of this are two NT children who also have to have their needs met, who need to feel loved and secure, who need attention. I don't want them to feel like they have to take on care of their brothers when DH and I get too old to do it or when we die but at the same time I don't want them at the mercy of a social care system that is not fit for purpose and leaves vulnerable people at risk.

No one should be forced to raise a disabled child if they do not feel able to do so. We had no choice because my DC have a neurodevelopmental disability not apparent until after birth, we have to get on and do the best we can. Women who do have that knowledge in advance should be allowed to choose.

Where are they?
Standing outside clinics, trying to make women feel guilty, or posting on social media...

hoik - I take my hat off to you. Honestly, I do. I absolutely couldn't have coped with any of that. You and your DH must be so strong.

That sounds really tough @Hoik and these prolifers just have no clue. I don't really think you know what you'd do until it happens to you. But at the end of the day it's an individuals choice, not the prolifers and not Heidi, who I'm sorry does not have the cognitive ability to understand the complexities of the situations people find themselves in.

You’re doing an awesome job @Hoik - it must be so difficult having other children who are NT and trying to balance everyone’s needs, let alone meet your own.

Hoik, that is a really helpful summary and well done for coping with it all.

There will be anti-abortionists on MN and some will have genuine deep seated views life begins at conception and abortion is murder. I respect their views but they should not impose them on others. Some of them will support children and adults with disabilities for life - there will be lots of nuns and other religious people who day in day out often for just about no pay care for adult disabled people in their care. I certainly do not diminish the work they do. However that does not mean we should change English law. There is also a societal and financial cost never mind emotional and physical cost to children and their siblings with some disabled children and adults too. We may not be supposed to talk about money in this context but it is relevant both on a personal level - harder for both parents to work full time even with babies as I and my husband did (with our non disabled children) and build up 2 full time careers which even 30 years on we both still practise full time and a state cost i.e. tax payer cost.

But I agree, no one has to justify themselves but if someone is going to give a reason, I wish it was the true one

Your true reason...the one you have decided everyone else is lying about

There aren’t going to be many who give YOUR true reason because lots of people dont agree with YOUR true reason

@PotholeParadise The cases that really affect the HCPs I know are teenagers and young mothers who are going to have a severely disabled baby. Even if the maternal grandmother says she is going to help out they know from experience that it won't last and the baby once it is a toddler will end up in care.

Hoik
I wish I could do more than put a silly little picture of flowers on an anonymous forum.

For the record, I do not agree with any further restrictions on a woman’s right to terminate. For whatever reason.

hoik

The cases that really affect the HCPs I know are teenagers and young mothers who are going to have a severely disabled baby. Even if the maternal grandmother says she is going to help out they know from experience that it won't last and the baby once it is a toddler will end up in care.

Oh hell. I don't know whether to say I'm shocked or if I'm grimly unsurprised. I suppose everyone and their dog turns up to cheerlead the pro-life position to those young women, including the grandmother-to-be, and then they just sod off without dealing with the fallout.

I think there are lots of issues here but the first is it is not saying abortion on grounds of disability is wrong.

It,s not denying the right to abortion.

It,s not saying late abortions where there is risk to baby or mothers life should change.

It is however saying that unless there is a risk to life babies in the womb with disabilities should have the same rights as babies in the womb with out disabilities.

Hoik, thank you for taking the time to summarise the scale of the impact of disability. I think it could really bring it home to some people, exactly what the issues are down the road.

It was a very well-put post.

Why?! A foetus shouldn't have any rights at all!
The fact it the two foetus are different.

The disability does change things. I'm not going to be fluffy when women's rights are at risk.

Great post from hoik

Where are the prolifers when the support is needed indeed.

It is however saying that unless there is a risk to life babies in the womb with disabilities should have the same rights as babies in the womb with out disabilities.
Unfortunately, that is not compatible with giving women choice over what happens to their bodies. Unless there is a risk to the mother's health, you would be obliging a woman to carry a fetus with disabilities to term whether she wants to or not, and then forcing her to give it into the care of others/take home a child she did not want, or (in the case of disability that is incompatible with life) forcing her to watch her birthed baby die.

Equality could also be served by allowing terminations up to term on demand, but I'm cetain Heidi's puppeteers would not want that because that would oblige them to admit their argument is not about equality, but is an attempt to reduce the rights of pregnant women.

I just thought I'd come back on the thread to quote Aristotle:

"Law is reason free from passion".

Just that quote should be enough for this campaign to be shut down.

Someone upthread quoted 284 post 24-week abortions in the UK in 2018. 284. That is all. So perhaps Heidi's mum should focus on fighting for better care and respite care for families looking after disabled children and adults. Let's be honest, that number will far exceed 284 and thus have an actual impact.

It's not like any pro-lifers will be affected by an individual's decision to abort, so why so vocal?