Petrina Barber is a fitness model, campaigner and the visionary founder behind the empowering Beyond the Stoma movement. With unwavering dedication, she has committed her life to championing the rights and well-being of those facing health challenges, particularly individuals living with a stoma. Petrina’s own remarkable journey is a testament to her unyielding strength, resilience, and determination to triumph over adversity, defying the odds.
Can you tell us a little about your background and Beyond the Stoma?
I was diagnosed with advanced cervical cancer at the age of 31, just five months after giving birth. Unfortunately, my symptoms were dismissed as nothing to worry about during my pregnancy. Subsequently, I underwent intensive chemotherapy, radiation, and a series of surgeries over the next decade of my life. Although I am now cancer-free, the radiation treatment has resulted in radiation disease, which is incurable and has damaged all the healthy organs in my pelvic region. January 2023, I underwent bowel surgery resulting in the formation of a permanent stoma.
Beyond the Stoma is the world’s first non-biased online resource. The platform empowers individuals worldwide to enhance their quality of life with a stoma.
How did the idea come to you?
Pre my own stoma surgery I really struggled in terms of stigmas surrounding life with a stoma and what people thought of those that had one as well as wrestling with what I had been told would no longer be possible for me with regard to fitness and specifically weight training. Alongside fitness, art, photography and modelling are passions of mine and I had a vision of a way in which we could represent people with stomas in a totally different never been done before way. The intent was never to create “one” way. But instead to offer a different perspective and more diversity in this space.
When looking for resources and information I started to see a pattern emerge in that most of the accessible information is inequitable across the community and can be entirely dependent on where you live, the hospital you went to and the medical practitioners you met. I wanted impartial nonbiased views. People willing to truly talk about pros and cons without being in paid partnerships. I felt that the community deserved access to this type of information in order to make the best-informed decisions as relates to the management of their own lives. Beyond the Stoma doesn’t seek to supplant the information and advice that’s out there and offered but instead augment the offering keeping the patient’s best interest at the heart of what’s provided rather than operating for profit and sales.
How did you achieve awareness?
The online stoma community is highly engaged and played a fundamental role in connecting me with others on the same journey. Before launching Beyond the Stoma’s ground-breaking visuals and official website, I had already connected with thousands of individuals who would find Beyond the Stoma valuable and essential. Spreading the word via the media and word of mouth has further amplified our message to millions of people who would benefit from the tools and resources we offer.
How have you been able to gain funding or grow Beyond the Stoma?
It’s been integral to Beyond the Stoma to keep it impartial and unbiased which meant personal funding and personal support from other incredible brands and companies who understand the mission and desire to make a difference in the quality of people’s lives. The photography campaign (bringing to life the Japanese art of Kintsugi in human form) website and launch was personally funded. Moving forward the intent will be to raise funding by providing bespoke, key resources that will require nominal fees with the money going back into growing for online and in person community.
What are the key successes?
Defining moments have been the launch of the photography campaign and the ground-breaking diverse representation of types of stomas and health conditions leading to stomas. The campaign sought to redefine the how those living with a stoma viewed themselves and their bodies as well as those without stomas developing awareness of what it uniquely looks like. We wanted to redefine the narrative and feedback from organisations and people was resoundingly positive. Success is measured in a qualitative way for Beyond the Stoma. We don’t have metrics and KPIs. We’re attempting to move the needle on real quality of life issues and that will mean something different for each person. We’re aiming to raise awareness amongst the general population outside of the norm to breakdown stigmas for the benefit of everyone.
What were/are the challenges and how have you overcome these?
Having absolutely no funding and having to bring to life your vision will always be a challenge regardless of project you’re working on. Staying true to your objective and intent of remaining impartial and unbiased when the easier path is accepting funding, sponsorship and paid roles is difficult. There’s been challenges in bringing disability issues and representation of those with stomas mainstream. Fashion and clothing is seriously behind in both making clothing that takes into account bodies with stomas/representing people with stomas in advertising and marketing.
What are your plans now/for the future?
We are just about to launch Beyond the Stoma’s fitness offerings, providing advice, support and guidance on exercise and fitness pre/post stoma surgery. In 2024 Beyond the Stoma will continue to bring together the community in empowering, unique ways both in person and virtually, as well as collaborate with experts, partners, brands and organisations. Personally, my major focus remains on managing my health condition and the continued required treatment in order to try and stay out of kidney failure. My priority is to spend quality time with my son and simply being the mother, he needs. I have my own aspirations for myself around fitness as I continue to push the boundaries in understanding what my body is capable of and have plans in 2024 for what I’d like to achieve.
What would you like to share with others to encourage them to start their own journey like you have?
You don’t have to wait for the perfect time or have the best funding or marketing. If you have an idea that’s genuinely serving the need or desire of a demographic you just have to have the determination, resilience and most importantly consistency.
Can you share your top tips for entrepreneurial success?
Be a cheerleader and supporter of others. Entrepreneurship isn’t a competition there’s space for everyone and opportunities are much more likely to present themselves to those who support others. Develop a thick skin, be able to take feedback for what it is and use it to make your work more meaningful.
Who are the 5 people who inspire you the most and why?
Always everyday normal people doing extraordinary things. Most people that inspire me are names no one will ever have heard of. Because they’re doing things for the greater good with no self-serving interest. There are incredible humans in every walk of life extending kindness, compassion, generosity to others simply because that’s who they are.
What are your favourite inspirational /motivational quotes?
Reputation is what others think of you. Character is who you actually are.
If you judge a fish by its ability to climb a tree then it will always be stupid.
For more information visit https://www.beyondthestoma.com/
