A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

That's a fantastic post, Plenty. I couldn't agree with you more.

Great post Plenty.

Good post, Plenty.

If we want to reduce the number of TFMR, for Downs or any other condition, we need to listen to the women who have opted for termination, not just the ones who have opted to continue. We need to listen to their actual reasons and we need to not dismiss them out of hand as disablist or poorly informed. We need to make it OK for them to tell their stories too.

I agree with this 100%, very well said.

I won't ever think that the documentary was 'manipulative' though. If it came across that way it's because the people like me who are living within the DS community have been ignored for far too long so we're ready and willing to batter you over the head with some of our views for once

It was manipulative because she didn't batter us over the head! That would have been great. Come right out and say it. But it was all insidious. Nudges and winks. That ghastly travesty pantomime of an amniocentesis. That talk to HCPs showing the speaker's little girl watching a and listening then running up to her at the end. (That was just exploitation- and I can't understand why more people aren't shocked) The awful treatment of the woman who had had a termination- if SP couldn the stop herself crying, she should have stopped filming, pulled herself together and then carried on, not put the woman in a position where she had to apologize.................

Absolutely- make a programme showing her happy family life. Absolutely make a programme talking about her concerns about testing and abortion. But not this hideous propaganda. It did nobody any good.

for me I have an issue with the total emphasis on down syndrome almost to the exclusion of other conditions which may be similar/may be worse.

there is an impression that you only need to worry about ds/edwards/patau and to a degree spina bifida.
you can have a clear test NIPT etc for DS and still go onto have a child with a significant learning disability/medical condition/severe ASD etc .

so there is some choice to have or not have a child with disability when you get pregnant but not really. only a choice over certain more common conditions. it is an illusion of choice and control.

society still needs to provide and care for and welcome people with lds.

See I think you can give women more information and they can still terminate their pregnancy and that's ok. I don't think if you give women more information they will automatically choose not to terminate because the women that do are disabilist or poorly informed and just needed another fact sheet or documentary to tip their decision. Equally, I don't think the women who choose to keep their child are naive and ignorant who need to be constantly asked about their decisions by hcp.

There should be better information for women (and the recent link from the NHS website suggests it has improved). There should be better resources for people living in our communities with ds and other disabilities so if someone has a child with a disability they do not spend their lives worrying themselves to death about who will look after their child when they are gone. If we have those things and the termination rates stay the same there is nothing wrong with that but the children and adults who are here will have a better standard of living and their parents will be more reassured they will be provided for when they are gone.

brilliant post plenty

"only a choice over certain more common conditions"

Yes, we currently screen mainly for chromosomal abnormalities that are relatively easy to recognize. Sadly, there is far worse than DS and genetic disorders that mean a terrible life sentence of inevitable decline and agonising death are not tested for at all due to their cost.

It is only once you know of such a condition in your family that you can ask to be tested for it, by which time it may be too late for multiple members of your family.

Testing for all known genetic disorders should be offered with the amnio.

That "amniocentesis" display was horrendous. Absolutely horrendous. I lost any sympathy I could have had for Sally Phillips right then as someone who has been through that procedure.

Standing ovation for Plenty!

A World Without Downs
Unfortunately not a true reflection of children/adults with Downs. My son has severe learning difficulties (not Downs) but goes to a school for children with SLD - there are many Downs Children there, some of them are unable to walk unaided have medical/health problems, little or no language & need help with their personal care. Sally met children/young adults & has a child with Downs who were all functioning well, who obviously do or had a mainstream education - speech & no major medical/health issues problems. Sally did not meet anyone from SLD schools or adults with severe Downs. Sally did not answer the questions about future plans in place for her son - but she is not short of money so could afford to set her son up in a house with carers etc. My son is now 18 and even though he has been awarded enhanced rate of PIP and attends a school for SLD, (functioning at the age of an 8 year old in an 18 year old body), he has not transisted into adult services - his learning difficulties are not severe enough! - what a joke. My son speaks well & can be understood, he can read (books aimed at 6-7 year olds) & his level of understanding is of a much younger child. However he still needs help with his personal care, he suffers with severe anxiety when things are different in his life & he doesn't understand, he can get angry & violent, he projectile vomits & has nervous tics. Not being able to access adult services means I am no longer entitled to respite (before he was 18 I was), having respite meant that my son got used to spending time away from me, sleeping somewhere different, helping to prepare his meals etc. Not transferring into adult services means that when my son is a college he will not be entitled to support whilst there, even travelling to & from the college, which he would need. When he is not at college he will be unable to attend a day centre which includes access to holiday schemes. So what happens to my son when I am either too old or not well enough to care for him, how is he ever going to learning to be independent if he has no access to adult services away from me - as a parent you can only teach your children so much - children need to learn things from people other than their parents. All children need time away from the family home to become independent. Having a child with special needs is extremely hard work & draining on the whole family - it's disgusting that I should fight for my sons rights to support in future college and future living. Even being able to handle my sons finances I have to apply to be a Deputy & renew the Deputyship each year - anyway I could go on but unless you have a child with any sort of disability you will never know how hard & difficult your life is. I'm happy that Sally has a son who functions well in society, and is clearly fun & loveable to have around (but then he is only 11), what does the future hold for him & her family? Also I hear lots of people say people who have Downs and so loveable & happy - yes a tiny snap shot of what a Downs child is - there are a lot of Downs Children who struggle, often living with elderly parents & are not supported. If you have a child with SLD unfortunately it is hard to keep your friends, have a night out unless you have family support who can give you a break by looking after your child (which is not always possible if you have a child with severe medical problems, or elderly family members who would not be able to cope, live too far away etc. Your local authority are not always there as I have found out. Sally a good programme but from someone who sees first hand what a lot of people with Downs are like it is not a true reflection. A question to ask yourself how many children with Downs are in your borough? how many of those children with Downs attend mainstream school & transfer into Mainstream Secondary School? - I suspect that the majority of people with Downs, although may start in mainstream school eventually have to attend a Special Needs School because their level of understanding and learning is so far below their peers. I supported a Downs child in a mainstream school & although the child progressed upto Year 3 the child was working at the level of a reception child, also the child's peers found they had nothing in common with the child, who still wanted to play like a 4 year old & couldn't understand her peers play. I do not know many mainstream schools in my borough who have a Downs child in them & I know up until 7 years ago there was 1 child with Downs in Secondary School struggling.

Ovation for plenty and for tibs who walks the walk.