Campaigner and blogger Hayley Goleniowska and actress Sally Phillips, both mothers to young children with Down’s, wanted to raise awareness about this emotionally charged debate and ask what effect the test could have on our society. Crucially, they are filmed talking to student midwives, as Sally asks what the impact of this scientific breakthrough will be on the future of Down’s Syndrome, at a time when the health, life expectancy and wellbeing for people born with the extra chromosome continues to improve. Sally’s 12-year-old son Olly and Hayley’s daughter Natty, 9, are featured – both are happy, bright and well adjusted children, who attend mainstream school.
Earlier this year the National Screening Committee recommended the government make this new genetic screening test for Down's Syndrome available on the NHS. In a world where pre-natal genetic screening is predicted to become routine, this timely documentary asks what is the future for people with disabilities? The discussion will have contributions from experts and supporters on both sides of the debate including children and adults with Down’s Syndrome and leading professors in the field of genetics.
In her blog Hayley (who wrote an article for JFH 26.2 on this very subject) explained why she wanted to make this documentary: “A World Without Down’s? gives a balanced view of attitudes towards the condition as Sally shares her story. It calls for us to all to take a step back and see the unique qualities of each and every human being and, more importantly, it draws the medical and the social together. It does not dictate. There are no bad guys. It does not seek to remove choice, in fact the opposite is true."
"My hope is that it will serve as a springboard to further collaboration, education, understanding and the support that we all need at different times in our lives. Already links have been forged between medical teams and the Down's syndrome community as a result and I am proud to have been asked to work with Oxford University obstetrics students as an Expert by Experience. The ripples are already being felt."
"What this programme and this discussion has cleared in my head though, is that perhaps when society seeks to remove what it sees as unproductive members of its group, it will lose precisely the element that can make it stronger. One thing we can be sure about is that none of us are the same, and therein lies our collective strength. If you take away the one part that you think is superfluous to requirements, you may soon find that the whole is weaker.”
A World Without Down’s Syndrome? is on BBC2 at 9pm on Wednesday 5 October.