A World Without Down’s Syndrome? Where do we go from here?

Just over two weeks ago I witnessed an online surge, the likes of which I have rarely seen before. Started by one passionate mum, actor Sally Phillips, her 'celebrity' tag helped her voice be heard, and we all joined together to create a tidal wave of reaction following her ground-breaking documentary A World Without Down's?

A world without Down's syndrome? Where do we go from here?

Powerful Networks

'It seemed as though a network of parents on smart phones lit up the nation like tiny beacons across a map during the war', said Sally bravely holding her torch aloft ahead of us. These were parents brought together by online networks and social media forums such as Special Needs Jungle and the Future of Downs, forums that several years ago we’d have been left feeling isolated and powerless without. Quite literally in the dark.

By sharing our experiences, we realise we have much in common, and apart from offering mutual support, our voices are merged and amplified. The last few weeks made me realise that these are powerful times indeed for our communities.

Changing the Narrative

National Poet of Wales, Gillian Clark speaks of sharing our stories, our narratives, to change the world. Our words and slices of life can show another way and create more impact than protests about our struggles alone.

I quoted her Radio Four interview in my post How Do Passionate Campaigners Change the World post. ‘Every time we try to communicate our humanity to another, person to person, writer to reader, every time we make a work of art, as the poem says in its opening lines, it is like putting a letter in a bottle and throwing it into the sea. It’s an act of faith that maybe some day someone on the other side of the ocean will find it but it might take a generation to arrive.’

And during the last weeks there were interviews on local radio stations, in national papers and mainstream prime time TV as each media outlet clambered for insight from champions of the cause. From experts by experience.

They asked you, me, celebs, ethics professors and crucially, those with Down’s syndrome for their thoughts. A large net with very fine mesh was cast and every home, workplace and school was talking about the topics raised in the documentary, or so it seemed.

Documentary: A World Without Down's?

Sally Phillips' documentary was her way of smashing the taboos. It is a beautiful film which not only tells her personal story but also explores society’s attitudes towards disability as well as the ethical implications of the way in which non-invasive prenatal testing is being delivered.

It challenges the negative assumptions and loaded terminology that often sit at the heart of our national screening programme and looks at how that impacts on the decisions parents make antenatally.

The film is carefully woven by film-maker Clare Richards, combining humour, heart and fact. It looks at what we want for our society moving forwards, and Sally interviews ethicists, LD champions, scientists, women who’ve chosen termination and those who haven’t. It brings a vast array of experiences together and combines fact with the much-needed emotion and humanity that needs to be brought back into this discussion.

It also provides a disturbing look into the possible future when Sally visits Iceland where they have experienced 100% termination rate for babies with Down’s syndrome in the last 5 years.

The new non-invasive prenatal testing, as one parent put it, 'is simply a tool we can use. Our ethics will design how we use it.' But this was not the theme of the documentary as many thought.

The real topic of the programme was how we view disability, the value we assign to others and how we define perfection. It asked about the kind of society we want to live in. And, as for the inevitable hot potato of ‘choice’, most of us are agreed on that, but as GP Steve Laitner put it, 'Choice that is not truly informed, but instead moulded by societal pressure is not really a choice at all.'

It was always going to be an emotive topic, more emotive than many of us could have envisaged, and I, for my part, having played a very small part in the programme feel wrung out and exhausted now it's over. But I am so very proud of Sally and what she has achieved.

Where do we go from here?

Parent power... patient power... self advocacy.

These are the watch words of the moment and it’s where we are all heading. Whether you are campaigning about accessible toilets or SEN provision or accurate unbiased support for parents at point of diagnosis, the ball is in your court.

Since the documentary, Experts by Experience are being asked to write for medical journals, speak at NHS conferences, give quotes to the media, create updated information booklets and videos for new parents, even take on the role of tutor at medical schools. This is how we can make a difference, right at the root.

So when the dust has settled and the raw emotions have been aired and shared and new understandings have been reached, we can say that we parents, the unpaid, untrained often unrecognised experts, have made the world a better place for our families and for others.

The documentary, A World Without Down’s Syndrome is available to view on iPlayer.

Hayley Goleniowska
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Hayley Goleniowska

Parent Advocate/Blogger at Downsside Up
Hayley Goleniowska is the author of the popular blog, Downs Side Up, where she writes about life with her daughters, one of whom has Downs Syndrome, and other issues surrounding disability.
Hayley Goleniowska
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  • Oh yes. Am a big believer in the ‘parents are experts’ saying. We can put our minds to anything, and often come up with a better answer than those restricted by jobs and systems. Attitudes in society are changing I believe, slowly but surely, and we just need to ensure they keep going in the right way. You’ve done so much to help that already of course x

    • We have so far to go and there are still some brick walls to drill though, but yes, together we are a powerful force Steph, thank you.