Written by Hannah Diviney, author, activist and client of CPA.
This month I’m using my column to celebrate. What exactly am I celebrating, I hear you ask? Well, July (most well-known for wintery Christmas celebrations, at least here in Australia) also happens to be Disability Pride Month!!!
If you didn’t know that, by the way, it’s OK. I didn’t know it existed until a couple of years ago and I’ve been disabled for over two decades now. You’re not living under a rock. Disability Pride Month is barely recognised at all on the global stage, and only really exists within disabled communities that have gathered online in spaces like Twitter and Instagram. They might occasionally spill onto the streets of towns and cities, hosting small events for people with disabilities and their allies but that’s about it.
I reckon most people would stare at me with a blank face if I asked them what they were doing to recognise, celebrate or support Disability Pride Month. In fact, when I told my Mum it was Disability Pride Month, her immediate response was; “Why do we have a separate Pride Month for disabled people?” When I looked at her confused, she clarified; “Shouldn’t Pride Month (celebrated in June) embrace all members of the LGBTQIA+ community including those who also identify as disabled?”
I laughed. To me, Mum’s question unintentionally highlighted just how far we have to go. For the record, in case anyone else had similar thoughts to my Mum, Pride Month is about celebrating the diversity of and finding pride in your sexuality and gender identity, irrespective of what other marginalised communities you exist in, while Disability Pride Month is about celebrating the diversity of and finding pride in your life as a disabled person, no matter what your body or your brain has been through.
For a lot of people both within and outside the disabled community, the idea of celebrating your disability and being proud of it is impossible to comprehend. Not so long ago, I was one of those people. How could I celebrate something that made my life so difficult? That robbed me of so many things people my age experience with an ease my body and brain can only dream of? Why would I celebrate something that the world said made me less?
It’s only in the last couple of years, since becoming a proper advocate and being welcomed into those spaces, that I’m learning to feel proud of my disability, a process I imagine would have been infinitely easier if there were other disabled people I could see living the life I wanted to. The road to disability pride is one many of us travel without a map, because we’ve never seen it before.
We have to teach ourselves how to replace pity, shame and anger with joy, wonder and curiosity. Breaking out of the grip of internalised ableism that tells me I am worth less, less capable, not deserving of love or other good things – and an avalanche of other insidious thoughts – will take me a lifetime. It hasn’t and won’t be easy or linear in any way. But it’s happening. Slowly.
My disability has complicated my life tenfold and taken a lot from me, but it’s also given me a hell of a lot. The chance to be everything I never saw and to see my childhood dreams come true. To build a platform made from words, which you all know I see as my superpower. It’s brought people I’ve spent a lifetime searching for, into my world, people I now couldn’t imagine my life without. So, while I’m definitely not all the way there, my pride in who I am is growing. And yours will too – you just have to stop trying to break yourself to fit in a box that wasn’t meant for you. Hang in there.
Happy Disability Pride Month!
Love, Hannah x
When Tamsin Colley arrived for the 2016 Paralympic Games she was the youngest member of the Australian team, turning fourteen in Rio.
It’s an achievement most of us only dream of. As an athlete living with cerebral palsy, it also made Tamsin an advocate, a role she was eager to take up.
“I was the youngest ever Australian to compete in athletics at the Paralympics,” says Tamsin. “I was lucky enough to get support to participate in sport from a young age and want to ensure other people receive the same opportunities.”
With the Paralympics under her belt at such a young age, Tamsin’s focus turned to her high school studies, ready to bring her determination and drive to excel at this next challenge.
But she was in for a rude shock. The support and encouragement that had helped her reach the Paralympics was excruciatingly hard to find in the education sector. Whilst some individual teachers tried their best to accommodate her, it became clear the system was not geared towards supporting people with physical disabilities.
“People making the decisions about disability provisions knew little about what support we need,” she says now.
“In sport, it’s obvious when someone has a disability they are working with. It can be less obvious in school. My cerebral palsy is mild, but I still write slower, and they just didn’t understand what I needed.”
In an article for the Canberra Times, Tamsin recounts her Higher School Certificate exams. It was an uphill battle to get the support and extra exam time she was entitled to. The examiners were not trained in the ExamWriter software she used, causing Tamsin to lose some of her answers and valuable time to complete her exams. For every mistake a misadventure claim was filed, and each was rejected by someone who had never met her.
Tamsin beat the odds and is now studying Exercise Physiology at the University of New South Wales. But she never forgot the uphill battle to academic success – and she’s demanding our education system does better for students like her.
“Sport seems light years ahead of academia because it provides opportunities to excel. The education system doesn’t. It struggles to give us the most basic support,” Tamsin says.
“If I hadn’t had support from my parents, it would have been a lot harder and probably I wouldn’t have gotten as I did. I really recognise my privilege in having tertiary educated parents to advocate for me and navigate the bureaucracy. Not everyone has that.”
Tamsin’s vision for a more equal education system begins with agency, choice, and a voice.
“Recently I started university and unlike at school, they actually met with me and discussed my needs, which was great. In the HSC they don’t meet the person. They can’t differentiate between who needs support the most, even in the classroom too.
“Educating people in schools and just talking to us would make a huge difference.”
Marley Lyras-Hull is a master juggler, Cerebral Palsy Alliance employee, and is currently studying her fourth degree – and she shares the secrets behind her drive on the Cerebral Conversations Podcast.
She’s raising three daughters, one of whom lives with a disability, and Marley herself lives with cerebral palsy. When there really are only 24 hours in a day, how does she get it all done?
Marley talks about how she juggles ALL the things, what inspires her, and her tips for other parents living with a disability or parenting a child with disability.
By Ananya Choudhary
My name is Ananya Choudhary, I am sixteen years old with Cerebral Palsy. I am in my last year of secondary education and currently studying at Macarthur Girls High School. I am interested in technology and I like creating digital content such as social media posts, posters, flyers and many more. As I am growing and slowly entering the real world outside of school, I want to learn more about the work environment. I think that through work experience I will be able to learn about the work environment and how to use theoretical knowledge in the real world.
I got an offer to work in CPA’s Global Influence and Social Impact Department from 14th January 2022 to 28th January 2022. This department works in championing an inclusive society for those with cerebral palsy both domestically and globally and building the community through digital media like websites, emails, social media, blogs and many more.
When I started my work experience in CPA, in the first week I got to edit photos, create email banners and a guide on creating content and design. I found the photo editing and creating the email banners were simple but enjoyable tasks. These two tasks helped me to use my creative mind by experimenting with design elements. I initially found a guide on creating content and design task challenging. However, the knowledge of literacy and creativity that I gained from school assignments allowed me to create and present this guide for professional purposes. Through all these tasks I got the ability to enhance my creativity, organisational and time management skills. It also gave me the opportunity to present my work in a professional layout.
Since COVID-19 was at its highest peak in Sydney, I was not able to travel to the CPA office. This is a downfall because I didn’t get the opportunity to work in a team with the CPA staff and learn about their physical work environment. However, I was able to learn about the online work environment of CPA. I also got to learn how to communicate effectively through emails. This helped to enhance my online communicational skills as well.
Overall, throughout the first week of online work placement in CPA I got to gain many skills such as organisation, time management, execution of different content, creativity and effective communication through online platforms such as email. I also had first-hand experience in applying the learnings from school education to the real world. I hope to learn and gain more experiences in my second week and in the future as well.
My Tips on Work Experience
– Brainstorm what type of career you want to pursue in the future and look for workplaces that can help you to get an insight related to that career stream.
– Try contacting many workplaces to get the opportunity. If you don’t get any opportunity because of COVID-19 or any other reason, don’t lose hope and keep trying.
– Create a relevant resume as evidence for skills you have acquired, just in case workplaces need it.
– Be open to different opportunities as there is a possibility that it might not be an exact fit.
If you or someone you know is interested in work experience at Cerebral Palsy Alliance, you can visit the Student placement FAQ’s on the Cerebral Palsy Alliance Website and register your interest on the students page or you can email firstname.lastname@example.org
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
Cerebral palsy is the most common physical disability in childhood, and behind every diagnosis is a story.
Right now in Australia, there’s no standard program for screening babies for CP. That’s why the Window of Opportunity campaign exists: to advocate for a national Baby Movement Screening program for every child born, or BaMS for Bubs.
At the launch event the CPActive community heard from four parents about their child’s journey to diagnosis and treatment. These are their stories.
Kylie’s daughter Anika had a stroke shortly after she was born. At the time, it was devastating for her family, but Kylie says it was also lucky in a way, because it meant her health and development was closely scrutinised, and she received her cerebral palsy screening at only a few days old.
By 6 weeks, Anika was receiving intensive occupational and physical therapy.
“We know through having done our own research how incredibly important neuroplasticity is in babies and children, so I really do think that that early start for her has made a world of difference,” Kylie says.
“We went from having a little girl who had no idea she had a right-hand side of her body – we would have to pick up her arm and shake it – to now a little girl who has worked very hard over the last four and a half years, that she is able to do just about everything that a little girl should be doing at that age.
“That early intervention, as far as I’m concerned, has set her up for a life that she should have.
“I can’t believe there are so many kids who slip through the gaps because they don’t get that opportunity.”
Eden knew early on that her son Kingston wasn’t like other children. For months she was told that all children do things in their own time, that there was nothing to worry about.
But when Kingston’s first birthday arrived he was not hitting the same milestones other babies his age were, like sitting up independently, and Eden’s anxiety reached a fever pitch.
Finally, as Kingston was receiving his one-year vaccinations, the paediatrician remarked casually: “I think he’s got CP.”
“It hit me like a ton of bricks,” says Eden.
“I felt anger and disbelief. I just didn’t understand it. It wasn’t the world that I had ever thought that he would be in. I actually had no knowledge of CP at that time and everything that popped up [in my research] was very, very scary.”
In the months that followed, Kingston finally received his CP screening and assessment.
“Absolutely every baby in Australia born needs to have early screening… It’s so important for our future because that would have saved me. It would have given me peace of mind, at least knowing what path I was taking from 6 months onwards, not waiting, not every day pushing him… hoping that he would walk at 10 or 11 months and it just never happening.”
Eden has this message for the Federal Government:
“It is our duty of care to help create a better future for our children. We need to use science and health education to prevent any misleading diagnosis.”
Marelle’s daughter, Katie, is 44 now, but when she was born early screening wasn’t heard of.
Like many parents, Marelle knew Katie wasn’t typically developing, but struggled to have her concerns taken seriously by medical professionals.
“We were told all along the way that she was a slow starter, that we just had to wait and see,” Marelle says now.
“I spent 9 months searching for an answer to what I believed to be a problem with my baby. I had a gut feeling from day one that there was something not quite right.”
After taking Katie to see two more paediatricians, several GPs and a chiropractor, they were finally referred to a cerebral palsy specialist, where Katie was diagnosed almost immediately.
Katie is now living happily in specialist accommodation and close to her family. But forty years later Marelle still feels the pain of her family’s struggle to get Katie diagnosed.
“Perhaps if there was such a thing as an early screening program life could have been different for Katie,” she says.
“That window of opportunity that we talk about was lost for her. There was nothing in that 9 months for her. Had somebody taken up her cause and sorted out on day one, when a mother says there’s something wrong with my baby, there could have been a different outcome.”
Grace hardly had a heartbeat at 35 weeks, meaning that even after she was born her mother Anne was always on the lookout for health complications.
“I really knew from the night Grace was born that it would be a different journey… I was always looking for things, milestones that Grace wasn’t hitting,” Anne says.
After “a diagnostic odyssey” they finally arrived at Cerebral Palsy Alliance, when Grace was 18 months old.
“We tried to make up for lost ground with really intensive therapy,” says Anne. “It wasn’t as early as what it should be by a long shot, but I was searching for a measured approach for helping Grace develop.
“My wish is that families don’t have to go on those sorts of journeys because… we really did miss those early years. Grace has done extraordinarily well… but I really feel that we lost those critical early days and weeks and months.
“When we were on our journey there was this concept of protecting the parents, and I really don’t understand that concept. I think that the earlier parents know and can be supported in the early stages of this journey… is the best start you could hope for.
“My message is the earlier [CP is diagnosed] the better… I wonder where we might have been if we could have put our energies into supporting Grace and really understanding Grace’s needs much earlier than what we were able to.”
We are so grateful to Anne, Eden, Marelle and Kylie for courageously sharing their stories and driving home why the Window of Opportunity campaign is so important for us.
If you have a story of your own, please share it with us at our Share Your Story page.