Suffolk mother supports calls for more debate as raised by Sally Phillips in ‘A World Without Down’s Syndrome?’
- Credit: Gregg Brown
The Suffolk mother of a child with Down’s syndrome says she hopes a documentary about the condition will spark wider debate.
Julie Nightingale, from near Debenham, said she shared many of the concerns about how the condition was stigmatised, as highlighted in A World Without Down’s Syndrome? on Wednesday.
In the programme, actress Sally Phillips told of her experiences parenting a child with Down’s and examined the ramifications of a new antenatal test, which is said to identify 99% of its cases.
Phillips, best known for her roles in Bridget Jones films, expressed concerns the new screening could lead to more terminations, possibly eradicating an entire community without questioning the ethical issues of its impact on society.
Like Phillips, Mrs Nightingale said the information given to parents about the condition was excessively negative and called for a more balanced portrayal.
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“We’ve had positive interaction with the medical profession but I do feel that few of them have had any experience of having had a child with Down’s syndrome and so they cannot fully understand,” she added.
“They can list the medical facts but that is just one side of it.
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“We didn’t have anybody say, actually there’s a programme of development so that children can now do really well at school, they are learning to read, they are able to get a job, they are able to participate in society – we aren’t getting any of that from the medical professionals.”
Mrs Nighingale, who used to teach at an Ipswich primary school, said the medical facts presented when she was told her daughter Jasmine, four, had the condition, made her “fearful” but the reality has been less troubling.
“When she was born, I thought that was it,” she said.
“As a parent, I thought she wouldn’t achieve her hopes and dreams, but every day that goes by, even the tiniest steps are magical milestones. She goes to school, she is happy, she enjoys her life and that is what I want for her.”
While she admits there are challenges for people with Down’s and their families, Mrs Nightingale says these should not be the only consideration when introducing the new tests.
“If we are going to say we won’t allow imperfections or allow people to overcome difficulties, then what does that say about us?” she added.
Call 01728 860622 to find out about Mrs Nightingale’s support group.