Keep burning brightly my friends – speak your truth to power as we need you NOW more than ever.

Youth means a temperamental predominance of courage over timidity of the appetite, for adventure over the love of ease.  This often exists in a man of sixty more than a body of twenty.  Nobody grows old merely by a number of years.  We grow old by deserting our ideals.”

Samuel Ullman (from the poem Youth)

Aren’t we all feeling a little unsettled at the moment. The calm, peaceful, prosperous world us westerners, at least, took for granted seems rather less solid than we had imagined. How I admire the climate change activists who have joined a world wide movement to speak truth to power. Whatever you think of the change agent Greta Thunberg, one cannot deny that she has mobilised millions of people and is leading the agenda.

I think it is marvellous when people join forces for a greater good. That people bother to get out of their comfort zones and demand that we treat others/our beautiful planet/our wildlife/our old and/or vulnerable with way more respect. We can’t keep having it all and blow the consequences.

Over the past six years I’ve spent a good deal of time “speaking truth to power” . My truth is it remains disgraceful/outrageous that children with cancer come at the back of the queue when it comes to dishing out life saving medicines https://www.bbc.co.uk/news/health-49760750 It is a truth that people within the global healthcare industry know too well; but one that is hidden from the wider world.

There are complex reasons behind this dreadful injustice; but the root of the problem is (undeniable) fact that children with cancer don’t make money for the pharmaceutical industry. It’s as simple, and awful, as that.

Things are changing and there are reasons to be hopeful – better legislation, new and different models of drug development https://apoddfoundation.org/ and huge numbers of passionate people, including many in the pharma industry, working so hard together to call for a better way of doing things. But things are not moving quickly enough and way too many children are still dying, or facing life long health problems caused by heavily toxic treatments that we currently still rely on.

I play my part too. I tell my story – as I believe so fundamentally in the power of narrative to change minds/to reach hearts/to move people. A story of love in its purest form – the complete uncomplicated love of a child, and the most savage loss of all. The story of my graceful, beautiful, funny daughter who died of cancer aged 18.

” This was a life that had hardly begun
No time to find your place in the Sun
No time to do all you could have done
But we loved you enough for a lifetime”

Mary Yarnell.

I’ve become pretty fearless in life, one does after this level of loss. But I still shudder when I step on stage and open my treasure trove of memories to a group of strangers – however well meaning they may be. It hurts at the deepest level to talk about my child. But talk I must. I burn with a fury of a system that seems so cruel and unfair. I need to be able to look another Mother in the eye and know that I did my best to make it better for the next child that comes along. And just maybe if there’s a heaven, and I see my daughter again, I want to be worthy of all her suffering.

But that’s what’s in it for me. When I speak my truth to power I need to be sure that I am not just a “bleeding heart” looking for an audience to endorse my grief. That would not be fair. It’s a brutal question, but one I believe, is essential to ask ourselves before we step out and try and change the world.

I share my narrative in a quest to cut through the “we can’t” “it’s too complicated/difficult” – in a bid to reach into people’s hearts and ask them “if this was your child would it be good enough”. I’m armed with years of research, killer facts, bold questions and – most crucially of all – a huge respect and openness to the people who work in this industry – many of whom are also desperately trying to find ways to change. I am convinced that the only way to move forward is to make alliances, get people to feel safe and open to creative possibilities. Get them thinking oh “just maybe we could” . “what if we did something else.”

I spoke in Newcastle (fantastic City) last week on a medical conference about innovation and met some of the best medics in the World. This was a group of highly engaged people who wanted change. We had a wonderful conversation and I left the stage feeling elated. It’s taken me a long time to get here, but this is what I’ve learnt about speaking truth to power:

  • Tailor your message; but never dilute it
  • Forget being offended – people often rally against change. It isn’t personal it’s just human. Grow a thick skin and say it anyway. Change will never happen if we aren’t brave
  • Always be polite and respectful; even when other people aren’t
  • Find the people who want to innovate/change/do things differently and make them your best friends – this is where the magic happens
  • Target your message/energy/action to the people you are talking to – try and see things from their world view. Work out how you can create the greatest impact with the least energy (if you want to be an activist energy and time are very precious commodities)
  • Know very clearly why you are there and what you want to say – and then be quiet and listen very hard
  • NEVER EVER become part of the system/problem you are trying to change. Always step slightly back and use the outsider’s power of a different perspective.

Speaking up for something I believe in has been hugely rewarding for me. I don’t – yet – get involved with climate change activism, but I’m very tempted so watch this space…. and then there’s bullying, the criminal justice system that doesn’t allow a more compassionate response to children who have been traumatised/unloved….. Just so much to do and hopefully a good few years left to make a difference.

Thank you for all the stories you send me. I love hearing them and have started to get out and meet you inspiring people. This week I met the youngest Imam in the UK – fabulous and so interesting learning more about Islam. I’ll tell you all about it next week.

Have a wonderful week.

Debbie x

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