The beauty of being an intermittent Radio 4 listener means that I often find the answers to pertinent situations in life precisely when I am not seeking them.
When pondering the ethical conundrum of new antenatal screening programmes whilst peeling potatoes in the kitchen last week, I heard National Poet of Wales, Gillian Clark talk about her poem Letter From a Far Country.
She had written it as a feminist protest but instead it was lauded as a celebration on publication. She explained the sudden realisation back then that being positive is what creates real change. Fist-shaking switches people off.
"Now, if I want to save the planet, I praise the planet," came the advice over the airwaves.
The poem, she said, "is a letter to you, reader, from my far country. Each of us lives in a far country. 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."
That was it, the answer to effective campaigns of any description was right there.
With our blogs, our words, our narrative, the slices of life we share, we are all sending out little messages of humanity in bottles for others to read. To read, connect with, and gain an understanding, not only of our lives' differences, but also of the similarities that unites us.
It's change that happens slowly, but from within people hearts and souls. You can't force that kind of deep down understanding, you have to take an act of faith, believe in your message and stay on track.
And it brought me right back to the original strapline of my blog, that has often sounded naive to my ears 4 and a half years down the line. I'd written it late one night, foggy-eyed from the technical challenges of setting up the site, and from tears shed from exploring the emotions behind starting it.
"Gently changing perceptions of Down's syndrome from within hearts,"
And yet somehow, hearing those words from wise Gillian, it has never been a more relevant motto for me.
That is not to gloss over the injustices and inequalities for those with a disability and their families within our health, work and education systems. It does not hide the lack of support available, the constant cuts to services. It doesn't ignore the unspeakable shame of deaths by indifference of patients who have a learning disability or those due to diagnostic overshadowing. Nor does it turn a deaf ear to the negative and loaded language often used by medical practitioners and midwives who simply don't understand the realities of Down's syndrome today.
It is that we want these changes to occur because they are second nature, that people really care, that they see everyone as equal, whatever their abilities or disabilities, without having to be reminded. That we are all on the same side.
Campaigners Come in Many Guises
And as unique as we all are, as different as our backgrounds and cultures and as varied as the personalities that drive us, the mirad of Down's syndrome champions are joined together in one aim. Like countless strings on a bow, each working away to produce seamless music, vibrating differently, yet joined solidly at each end to remove the fear society has of Down's syndrome. Such is our community.
There are those who put their heads above the parapet, who dare to expose their lives, their thoughts and emotions to create change. Those who change hearts and minds on a daily basis with each person they meet within their communities. There are those who work tirelessly to support others through groups, therapy, outings, care. Others pour their energies into creative writing, art, dance, music or film. Some adopt a firmer approach. They hold views as diverse as the general population.
But the common thread they ask for is updated, accurate and unbiased support at point of diagnosis for prospective parents and fully informed consent before new Non Invasive Prenatal Tests are carried out, as well as a standard cooling off period in which to have quality, unbiased counselling in order to make a truly informed decision. They all celebrate diversity and difference and they all want to remove fear from the ignorant.
So what are the essential qualities of an effective campaigner ?
- They reach out and connect with others with interesting stories that are relevant to us all.
- They listen to what's going on around them and learn from others by having conversations from the heart.
- They ooze passion, are engaging yet humble and how they portray their message is almost more important than what they say.
- They follow their goal, yet are not afraid to fail or face the critics.
- They collaborate with others to amplify their message.
Enter Miranda and Bridget Jones actress Sally Phillips, mother of Olly, 12, who has Down's syndrome. She has spearheaded a BBC1 documentary, due out next month which looks at what we stand to lose in a world without Down's syndrome.
After months of being immersed in our community she says, "This is such a wonderful bunch of campaigners, each with a different skill set".
Yet it is she who has brought them together and galvanised them into a collaborative group called Future of Down's. And it is she who has believed so passionately in the need for a discussion around the ethics of the way antenatal screening is implemented that she has worn her heart on her sleeve and opened a window into her family's world to spark those vital dialogues. Her film is set to change the way we view Down's syndrome by celebrating the condition and daring to ask what we stand to lose without it.
Thank you Sally for your drive and passion.
Another key player stepped forward from a group outside Westminster to make her voice heard recently. This was not a protest, nor a march, not even a demonstration, but an upbeat gathering of some of the most positive individuals to ever take to this famous space. Champions with Down's syndrome and their families wanted the world to know that their lives are wonderful and full, that they do not suffer.
The enthusiastic young woman who spoke to those gathered was Heidi Crowther. She works in a hairdressers and also has Down's syndrome. She said, "We are all equally valuable and should be equally valued. Children with disabilities are part of the richness and diversity of life."
And you can't argue with that.
Thank you Heidi for sharing your insights with the world.
A third admired journalist and disability rights campaigner Mik Scarlett rounds off this piece where Gillian started it. A man known for not seeing limits, for his humour and positivity, he wrote about the common threads of sea changers; "While we all came from disparate backgrounds, creative techniques and output, and campaigned on a wide range of issues, we all thought that tomorrow could, and should, be better than today. As I wheeled through the inaccessible streets of Brighton, and then fought my way into a bar that had two steps into the front door I did not let this get me down. I could only see what could be, not what was. That is the power of dreaming."
Here's to turning dreams into reality. Thank you Mik.
And so, we focus on good practice within our maternity and healthcare services, we work to join that up, and we continue to change perceptions of Learning Disabilities by celebrating together and creating a new narrative. We learn from the past and we believe in a better future and daily we paint picture messages of what that looks like, and set them adrift in little glass bottles. These are the sea changers.
The Nuffield Council for Bioethics have listened to the concerns raised by charities, parents and medical professionals over the implementation of the new NIPT tests and are conducting an investigation into the ethics surrounding how this is done.
If you have a personal or professional interest in the matter, you can submit your evidence here.
This article was taken originally posted on Downs Side Up by Hayley Goleniowska.
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