Cerebral Conversations is a podcast series by Cerebral Palsy Alliance. Each episode features an inspiring discussion with changemakers living with cerebral palsy and similar disabilities.

We can all be agents for change, but we need to find our voices first and the courage to speak up.

In this episode, Bronya and Tara speak up about creating communities that empower those living with disability. How can we challenge governments to enact change that creates truly inclusive societies? What does advocacy really mean, and when does it really work? How can we help people find their voice and see the power in their personal storytelling? And how on earth can we get people to care about a cause that doesn’t personally affect them?

Bronya Metherall is General Manager of Global Influence & Social Impact at Cerebral Palsy Alliance. She leads CPA’s global advocacy campaigns, including World CP Day and Window of Opportunity, our campaign to introduce universal early childhood screening for cerebral palsy. Through advocacy, government relations, policy reform, innovation and capacity-building, she’s helping us affect social and economic change to create more inclusive communities. 

Tara Moss is an author, former model and ambulatory wheelchair user living with Complex Regional Pain Syndrome. Tara uses her public profile to help de-stigmatize disability, chronic illness and chronic pain. In 2020, she accepted the honorary role of Pain Champion with Pain Australia.

Click here to listen now!

Cerebral Conversations is a podcast series by Cerebral Palsy Alliance. Each episode features an inspiring discussion with changemakers living with cerebral palsy and similar disabilities.

One in 10 babies born in Australia end up in a NIC unit in our hospitals. In Australia we can do ethical, safe as can be, best research on stem cells and other therapies that parents are crying out for.

Join this cerebral (palsy) conversation with internationally renowned neonatologist, Professor Nadia Badawi. Early in her career, Nadia realised that working with newborns was an opportunity to change the entire course of a person’s life, not to mention having a huge impact for their family and the wider community. That realisation has taken her on an incredible path, becoming a leading voice in neonatal intensive care.

Nadia shares her perspective of the remarkable story of meeting baby Eve six years ago. This story was told by Eve’s dad, Joe Darcy, in episode two. Through early diagnosis of cerebral palsy and early intervention baby Eve’s life was transformed from a bleak outlook into the “little blonde cannonball” she is today. 

Click here to listen to the episode!

Cerebral Conversations is a podcast series by Cerebral Palsy Alliance. Each episode features an inspiring discussion with changemakers living with cerebral palsy and similar disabilities.

Australia is recognised as one of the most inclusive nations in the world, but really, is it?

Disability advocate and CPActive Champion Hannah Diviney joins Tara Moss to dig into the details of what it’s like to live with a disability and tackle stereotypes, mental health issues, and barriers to work and education. How do Hannah and Tara overcome the stigmas around disability and women? What does living with a disability mean for our sense of identity? And really, why isn’t there a disabled Disney princess? (Hannah’s working on that.)

Hannah Diviney is a writer, founder of the Krazy Kosci Klimb, and Co-Editor in Chief and Creative Lead at Missing Perspectives. For Hannah, visibility is so important. As she says, “visibility of disabled people in relationships, or disabled people being parents: that sort of visibility is very helpful for me in combating against my insecurities around whether I can have that, whether that’s in the future for me.”

Tara Moss is an author, former model and ambulatory wheelchair user living with Complex Regional Pain Syndrome. Tara uses her public profile to help de-stigmatize disability, chronic illness and chronic pain. In 2020, she accepted the honorary role of Pain Champion with Pain Australia.

Click here to listen to the episode.

Cerebral Conversations is a podcast series by Cerebral Palsy Alliance. Each episode features an inspiring discussion with changemakers living with cerebral palsy and similar disabilities.

CPActive Champion and Kosciuszko conqueror Lia Sintras has lived with cerebral palsy since she was just a year old, which hasn’t stopped her for a moment. From climbing Mount Kosciuszko to walking into her end of school formal (after over 500 hours of training no less), Lia knows better than most that – as she puts it – “Nothing is impossible. You just need to find people that make it possible.”

In the episode ‘Ahead of the (Learning) Curve, Lia takes us through the challenges and highlights of her school years, the importance of finding champions to back you, and what she’s working on to advocate inclusion for everybody who lives with a disability.

Click here to listen now.

CPActive Champion Hannah Diviney is on a mission to change things for women living with a disability. Now a Women’s Weekly Awards finalist with national television appearance under her belt, she’s not slowing down.

Hannah made her mark as an activist last year when she petitioned Disney to create a princess with a disability and give representation to millions of girls around the world. Her Change.org petition went viral with over 50,000 signatures so far, and cemented Hannah’s place as a voice for change.

She appeared on The Project TV to explain how important representation is for young children finding their sense of identity and self worth.

“Growing up in Australia with cerebral palsy is a bit tricky I guess, because disability isn’t really something that people have accepted totally yet,” Hannah said on The Project.

“Disney is a massive part of my life… I saw these strong, capable young women who were going on adventures, and they had friends, and they were falling in love, and doing all these amazing things. I just wanted to be like them, but there was no one who looked like me on screen.

“When you don’t feel represented or seen as a kid, it’s like it creates some sort of black hole inside you that you just have to continually step around.

“18% of Australians live with a disability… there’s a lot of us, and it’s absolutely not reflected in our screens at all.

“If I had seen myself represented on screen, that would have quite literally changed my life.”

Hannah’s petition has gained international attention, but it’s only the beginning of her journey to raise the voices of people with disability in the media.

She joined six other activists in creating Missing Perspectives, a global publication platform that critiques the marginalisation of minority women and girls in news media. Their work attracted the attention of Reese Witherspoon’s media brand Hello Sunshine, which kicked off a social media collaboration to amplify their voices.

It’s Hannah’s work on Missing Perspectives that has made her a finalist in Women’s Weekly’s Women of the Future Awards.

In an interview with the St George and Sutherland Shire Leader, Hannah said if she wins the Women of the Future Award she will use the prize money to fund advocacy workshops for Australian women and girls across the country, giving them the skills to own their story and use their voice.

“It would mean a lot to me, both personally and as a disability advocate and as a disabled woman,” Hannah told the Leader.

“We want to create a space where these women’s stories can be heard. All our writers are women and girls, we’re very specific in elevating the experiences of marginalised teens and girls.”

Australia’s Paralympic team put in an inspirational performance at the Tokyo 2021 Paralympics. They lifted the hearts of millions of Australians watching at home, struggling through a new wave of the COVID-19 pandemic.

At the CPActive Virtual Ticker Tape Parade, we asked young aspiring athletes with cerebral palsy to interview some of their Paralympic heroes returning from the Games: sprinter Evan O’Hanlon, swimmers Matt Levy and Lakeisha Patterson, retired Paralympic champion Katrina Webb-Denis, and two members of our Pararoo football team, Christopher Pyne and Ben Atkins.

These Paralympians shared their wisdom on training, resilience, representation and inclusion for people living with disability, the importance of activism, and how to set and smash your goals.

You can read a few of their key lessons here.

For those who missed out, we’ve put together a video with some of the highlights from the event! Check it out below.

October 6 marked World CP Day, and people around the world took to social media to share Millions of Reasons to celebrate.

So many amazing stories and photos were shared from every corner of the world – both by people living with cerebral palsy, and from their nearest and dearest who seized the day to celebrate their loved ones.

There are too many to list, so here are just a few of our favourite moments from the day:

1. World CP Day’s incredible compilation of people sharing their reasons to celebrate (guest starring our own CPActive Champion Hannah Diviney!)

2. Samantha Louise’s heart warming story about her daughter Ava and her twin sister

“I want to celebrate CP day by showing my twin girls play together, interacting with each other as individuals, they aren’t restricted by their differences when they are having a giggle.

“Their physical differences are significant, Avas CP is severe, but they both want to enjoy life. Being non verbal, the best way Ava communicates this young is by laughing so hard at her sisters antics most of the time. It’s heartwarming to watch.

“I am grateful to learn from Ava every day and be given an alternative perspective on life; a tough lesson in life which continues to make me stronger.”

3. Perth-based model, actor and activist Emily Prior

“Emily’s reason – to challenge and change stereotypes people have about disabilities. She wants to see disability in the media, in Film and Television so that kids like her get to see themselves represented. She wants to show that having a disability is not a tragedy. She’s totally proud of who she is!”

4. Former Aussie Paralympian Katrina Webb

“Happy World CP Day!! The world can prosper by celebrating the gift of ‘neuro-diversity’ that Cerebral Palsy brings. Each year, #WorldCPDay encourages people around the world to come together to celebrate and support those living with cerebral palsy. #MillionsofReasons“

5. Mikey ‘wearing and rolling every shade of green’ for fashion label Mighty Able

6. Comedian Rosie Jones treating us to a truly adorable throwback

7. Aaryan Shah, who you might recognise from CPActive’s Virtual Ticker Tape Parade

“Aaryan’s reason for celebrating World Cerebral Palsy day is because he loves being part of a community of diverse individuals all doing great things in unique ways.

Aaryan wants perceptions of people with disabilities to improve and for people to not assume they know all about someone’s condition without asking questions first.”

8. Canadian Prime Minister Justin Trudeau chiming in!

What was your reason to celebrate World CP Day? Share it with the CPActive community in our new Facebook group!

At CPActive’s Window of Opportunity launch event, four parents of children with cerebral palsy bravely told the story of their child’s diagnosis and treatment.

Some were able to receive an early diagnosis, giving the family the answers they needed, and their child the chance to receive the early treatment that can drastically improve their health and mobility outcomes as they grow up.

Sadly, other parents weren’t so fortunate. Their families endured long months of fear, stress, and desperation as they sensed something was different with their baby, but were forced to seek answers on their own as they tried to help their child.

You can read about their stories in detail in our wrap-up article, Stories from the Launch.

Watch the highlights from the parent panel at the Window of Opportunity launch below.

What you can do

The stories of Eden, Kylie, Marelle and Anne prove how early detection can change lives. Families can’t just ‘wait and see’ – they need answers so they can give their child the support they need to thrive.

That’s why Australia needs BaMS for Bubs: to open the window of opportunity for every baby, and every family. With your support, we can make it a reality.

If you haven’t already, sign the petition to the Federal Government here!

If you have experience with receiving a CP diagnosis and treatment, either your own or a family members, you can share your story with CPActive here.

We were privileged to have some of the world’s leading experts on cerebral palsy: Dr Cathy Morgan and Professor Iona Novak from Cerebral Palsy Alliance Research Institute, and Professor Rod Hunt from Murdoch Children’s Research Institute, join us at the launch of the Window of Opportunity campaign.

They spoke to our CPActive community to explain the science behind early screening for cerebral palsy, the impact of early treatment for infants, and why Australia doesn’t yet screen babies for CP.

“We want to start a [cerebral palsy] screening program for every baby in this country… irrespective of where they live, their postcode, whether they speak our English language or not,” said Dr Morgan.

“What we’re hoping to do with this program is put an opportunity into the hands of every parent.”

In Australia, cerebral palsy is the most common physical disability in childhood. But while we screen babies for hundreds of conditions when they’re born, CP isn’t one of them.

The reason: Australia’s policy hasn’t kept up with the science.

“Until fairly recently we just didn’t have the tests that allowed us to pick cerebral palsy with the accuracy that we can now detect it at a very early age,” Professor Hunt explained.

“Twenty years ago, when I was training as a paediatrician, we were deliberately taught that we shouldn’t make a diagnosis of cerebral palsy until children were two years old – because it was impossible to be certain about the diagnosis any earlier than that.”

BaMS for Bubs: how it works

Our campaign is asking for a national program called BaMS for Bubs: Baby Movement Screening for every baby born in Australia.

There are a few different steps involved in detecting cerebral palsy in infants. BaMS for Bubs begins with a simple short video of a baby, which can be captured by their parents on a smartphone.

“There are three tests that, when used together, can predict cerebral palsy with 98% accuracy,” Dr Morgan said.

“We can watch a video of a baby, just for a few minutes, three minutes, and people who are trained scorers whether… those spontaneous movements of a baby are typical or atypical.”

The benefits of early intervention

We have the technology to detect cerebral palsy at a very early age. However, some people still question the benefit of doing so.

Professor Novak had three answers for them.

“Early diagnosis is the gateway to early intervention. We think of three important things when it comes to early intervention,” she said.

“Number one: neuroplasticity. To help the child to learn the skills that they want. So, to smile at their mum and dad, to give them a hug, to sit up.

“We think about parent support because it’s a really stressful time and we know that parents that are supported have better wellbeing in the long run.

“The third thing is there are complications that can happen with cerebral palsy, so by starting intervention early we can prevent many of those complications.”

What you can do

The science is in: Australia needs BaMS for Bubs to open the window of opportunity for every baby, and every family. With your support, we can make it a reality.

If you haven’t already, sign the petition to the Federal Government here!

If you have experience with receiving a CP diagnosis and treatment, either your own or a family members, you can share your story with CPActive here.

Check out the highlight video from the expert panel below!

The amazing performance of Australian athletes with cerebral palsy at the Tokyo 2020 Paralympics has inspired a new generation of young children with CP and similar disabilities. To celebrate the return of our Aussie Paralympians, CPA recently held a virtual Paralympic Ticker Tape Parade, pairing aspiring athletes with some of our most successful Paralympians living with CP for an uplifting evening of community and conversation.

Culture and community

Kicking off the event were Christopher Pyne and Ben Atkins, represent Australia’s Para-football team, the Pararoos. They spoke to up-and-coming CPA athlete Matty Engesser, discussing the special bond that athletes with cerebral palsy have, and the importance of building and connecting our CP community.

“You need to find that special thing for a team to succeed, whether it be in football or athletics. With [the Pararoos], the drive, the determination, the spark was already there, it was just a matter of moulding and developing it. When we come together as Para-athletes we’ve all been through the same sorts of things, we’ve all faced challenges throughout our lives that able-bodied people don’t have to face, and that gives us a special connection”

– Chris Pyne

“We’re in such a fortunate position as athletes with CP that we have direct contact with our mentors, our inspirations, the people we look up to. If you can take anything away from this call – reach out to the current Paralympians. We were all once a 9, 10 or 11-year-old aspiring to get to the Paralympians or that World Championship. We’ve got the team spirit built in, it’s just taking advantage of that, and getting that advice and helping hand”

– Ben Atkins

Resilience and determination

Lakeisha Patterson had to overcome a difficult 18 months of injury, illness and lockdowns to make it to the starting line at the Tokyo Paralympics. She went on to win gold in the women’s 400m freestyle. She said that resilience was all about finding the “creative solution” to a problem:

“We’ve all got to overcome obstacles and it can be difficult to see past them at times and focus on the road ahead, but I think I’ve definitely learned [that] there’s always another way around situation… It’s just about giving things ago and finding that creative solution.

I believe when you are faced with challenges, you have three choices: you can either let it destroy you, let it define you or let it strengthen you, and I think I’ve definitely let all of these circumstances in my life strengthen me. They pushed me to become this better athlete so it’d be able to be able to get to Tokyo”

– Lucky Patterson

Matt Levy, a five-time Paralympian, also shared the importance of staying focused, in conversation with young CPA athlete Aaryan Shah. He spoke about how making the most of the experience.

“Getting ready for an event I really try and remember why I’m there in the first place. There can be self-doubt, you can second-guess yourself, I try and remember all the training and hard work I’ve done to get to that point. At the end of the day, racing is the most fun part of what we do and it’s really less than five minutes compared to years and years of training”

– Matt Levy

Setting goals and achieving success

Evan O’Hanlon is one of Australia’s most successful Paralympic sprinters, having won five gold medals. In Tokyo he won bronze in the hotly-contested T38 100m event at his fifth games, and he spoke with up-and-coming 14-year old track star Sybella Warton about the importance of setting goals:

“My process for going coming up with goals over the last probably 15-20 years has been to look around at what hasn’t been done and try and go and achieve that. So when I started in athletics, I said to myself, ‘no one’s run under 11 seconds as an athlete with cerebral palsy for the 100 metres – I want to go do that.’

So I set my mind on it and I started breaking up that goal into tiny little amounts that were more achievable – those tiny steps turned out to be 0.36 of a second, which I need to improve by, divided by 365 days and [broken down to] 0.001 of a second – and that meant that every day when I woke up I just needed to improve by that little amount and I’d be able to get my gold.”

– Evan O’Hanlon

Amanda Reid, who became the first Indigenous woman to win a cycling gold medal at Paralympics after triumphing in world record time in the 500m time trial C1-3, also spoke about the importance of breaking goals down into smaller, achievable steps. Amanda, who first represented Australia in the pool at the 2012 Paralympics before switching to cycling, said her strategy was to set herself short-term, medium and longer goals – such as winning a gold medal or breaking a world record

Representation and the gift of being different

Making a special appearance to round off the evening was Katrina Webb-Denis, who won gold medals at three consecutive Paralympics and is one of Australia’s best-loved athletes with CP. Now retired, Katrina was part of Channel Seven’s commentary team in Tokyo. She shared how much it meant to her that Paralympics was now getting the recognition it deserves, and also how CP has been her “biggest gift”:

“I just had the most incredible gift of being in Tokyo, where I interviewed Lucky and Matt poolside on behalf of Channel 7 and they were one of my favourite moments ever. To be a part of the media on the other side was extraordinary, because I know when I was an athlete I would have dreamed to have channel 7 waiting there and they never were. To be able to represent that as a Paralympian to be there in those extraordinary moments means so much to me.

“Cerebral palsy has been my biggest gift. My message is that this difference has been the thing that has powered me in so many different ways. It’s taught me to be strong, resilient, a problem-solver, it’s taught me how to have empathy and love for other difference… it’s great to be different.”

– Katrina Webb-Denis, OAM