How Do Passionate Campaigners Change the World?

The beauty of being an intermittent Radio 4 Woman's Hour listener means that you often find the answers to pertinent situations in your life precisely when you aren't looking for them.

How do passionate campaigners change the world?

When pondering the ethical conundrum of new antenatal screening programmes whilst peeling potatoes in the kitchen yesterday, I heard National Poet of Wales, Gillian Clark talk about her poem Letter From a Far Country

She had written it in protest but instead it was lauded as a celebration upon launch. She explained the sudden realisation back then that being positive is what creates real change. 

"Now, if I want to save the planet, I praise the planet," she advised.

The poem, she says, "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's it, the answer, right there  

With our blogs, our words, our narrative, the slices of life we share, we are all sending out little messages in bottles for others to read. To read, connect with, and gain an understanding, not only of our lives' differences, but also of the humanity 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 from within hearts," 

And yet somehow, hearing those words from 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. 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 without having to be reminded. That we all share common humanities.

Different types of campaigner

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 for proposed new Non Invasive Prenatal Tests as well as a standard cooling off period in which to have quality counselling and make a decision. They ask for diversity, inclusion and for the ignorant to learnt not to fear.

So what qualities does an effective campaigner possess? 

  • They reach out and connect with others with interesting, timely 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 voice.

Enter Miranda 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. 

Sally Phillips, the campaigner next door

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, Future of Down's who are advocating with you. 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.  
Thank you Sally for leading the way.

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 encouraging people to listen to your insights.

Mik Scarlet, respected journalist and disability campaigner, rounds off this piece where Gillian started it. 

He wrote after speaking with other 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, 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. We paint daily pictures of our lives and set them adrift in little bottles for others to find. These are the sea changers.

What are your thoughts on the new antenatal screening tests and the way they are being implemented? 
Anyone with a professional or personal interest can submit evidence to the Nuffield Council of Bioethics investigation into the ethics surrounding the implementation of antenatal screening. 
Visit the page here to find the survey to make your voice heard.

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