Social Impact Heroes: How Odette Schwegler & Blink Pictures are using compelling storytelling to create a social impact
Leadership is nothing more or less than getting a group of people to work together to achieve a common goal. Simple, right? Perhaps not! I’m a mother of four and often just getting them all to work together to set the table is an accomplishment of some proportion. I believe there is an art to leadership and that, for the most part, it cannot be defined; there is no simple right or wrong and the ‘magic wand’ to leadership does not exist. I do believe, however, that leadership can be inspired, and that inspired leadership can motivate people to find fulfillment in working towards a common purpose. I’ve been privileged to have both worked with and witnessed in action some great leaders — and, sadly, some really poor ones — from newsroom editors to sporting captains, captains of industry and political leaders. Without exception, the leaders who wielded ‘power’, manipulated, undermined and micro-managed created divisiveness, distrust and toxicity within their teams. They led through fear and were followed out of fear. People working ‘for’ them were demotivated and unhappy. Most left the moment another opportunity presented itself. On the other hand, the leaders who successfully inspired and motivated teams into achieving a common goal displayed a commonality of characteristics. They were courageous and led from the front. Always. They were consistent and respectful. Always. They mentored, encouraged and protected their teams. Always. Most importantly, they were impeccable with their word. Always.
I had the pleasure of interviewing Odette Schwegler, founder of Blink Pictures — a South African television and film production company that specializes in documentaries and unscripted works focused on making a social impact.
Outside of the production world, Odette serves as the Executive Director of the Tin Soldiers FOP Outreach Program which, having been birthed by a film, seeks to diagnose and support potentially thousands of people around the world suffering in isolation from an ultra-rare, devastating condition. Odette is also a trustee of the Joost van der Westhuizen Centre for Neuro-degeneration.
Odette is a highly respected filmmaker and content specialist with over two decades’ experience in directing and producing award-winning television and film. Listed among the 40 most influential people in South African media under 40, she has established herself as a successful businesswoman and content strategist, a skilled director, and a proficient executive producer.
A keen interest in the ‘human condition’ and empathy for people who want to tell their stories — whatever the story — give Odette’s work a characteristic authenticity and compassion. Storytelling is her passion, her purpose.
The founder of Blink Pictures, Odette has specialized skills in all aspects of production — technical, creative and business. She has applied these skills with success to hundreds of productions for local and international clients.
Odette’s reputation in the industry has earned her pride of place on judging panels for the SAFTA and the International Emmy Awards.
A philanthropist with a passion to serve, Odette has supported numerous charitable endeavors over the years — including the NSRI, JAM International, Hospice, Animal Anti-Cruelty, Seeds of Hope, the Nelson Mandela Foundation, and Sunflower Fund.
Alongside South African rugby legend, Joost van der Westhuizen, Odette established the Joost van der Westhuizen Centre for Neurodegeneration in 2014 which provides MND (ALS) patients with access to multi-disciplinary care through clinics at three of South Africa’s biggest public hospitals and supports ALSO research in Africa. Odette currently helps manage the NPO, while serving as a Director of the board.
In 2019, she committed to serve as the Executive Director of the Tin Soldier FOP Outreach Program, the purpose of which is to roll out a global awareness and patient identification program. The program provides education and support for patients, medical professionals, and the general public to raise FOP awareness and offer access to resources, a network of support and information on medical care.
Thank you so much for joining us Odette! Can you share the most interesting story that happened to you since you began leading your company or organization?
As the founder of a television and film production company specializing in documentary and current affairs work, I can think of hundreds of stories that have shaped and driven the company — from unearthing nationwide Elder Abuse and changing South African legislation, to exposing a vicious bouncer mafia. One story, in particular, impacted and altered the very heart of Bl!nk pictures, impassioning us to take our work beyond the screen.
It was a story about one of South Africa’s most famous rugby players …
Former Springbok Rugby Captain, Joost van der Westhuizen, was a sporting hero who, having risen to global fame and iconic status, fell infamously from grace amid scandal and deceit. His reputation in tatters and grappling to save his family, Joost was dealt a death sentence — a devastating diagnosis: amyotrophic lateral sclerosis (ALS). In facing his fate, Joost was resolute — he would battle the disease and in doing so, tirelessly fight to raise awareness and improve care for patients with ALS, most especially in South Africa’s under-served communities. It was with that goal in mind, that Joost allowed our cameras into his life for well over a year in the making of the documentary film, Glory Game.
During the making of the film, Joost shared his vision to set up centers of excellence for patient care and research. We joined forces to make the ‘impossible, not only possible but a reality’.
From a film, a dream was made a reality, and the Joost van der Westhuizen Centre for Neurodegeneration was born. Today, patients can access expert, multidisciplinary care at ALS clinics at South Africa’s biggest public hospitals, while research is underway at three of the country’s most prestigious universities.
It remains one of the greatest and most humbling achievements of my career.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
I’m not sure how funny this is, but I’ve certainly had a giggle thinking back to this moment over the years.
My career in journalism began as a reporter with the evening news. I was hungry and up for any assignment — the news beat was my world. Within a year I was ‘head-hunted’ by the country’s leading investigative current affairs program, Carte Blanche (South Africa’s equivalent to 60 Minutes). At twenty-five, I’d ‘made it’ — directing and producing for the most prestigious investigative program in the country. I was living the dream!
Veteran journalist and one of my personal heroes was Carte Blanche anchor, Ruda Landman. It was my first shoot with her and, while suitably terrified in the presence of greatness, I was confident that we were prepared and ready to ‘rock this shoot’. As we were about to roll for the first interview of the day, I was blissfully unaware that I had completely overlooked a key responsibility — keeping track of the anchor’s interview questions.
As a reporter, I’d always run my own interviews and had my questions noted. So if we ever needed to turn the camera back to me and re-take a question or two, it was simple enough. Investigative, anchor-led interviews were a whole new game. In those days we only filmed with one camera. So, at the end of the interview, we turned the camera on the anchor, and he/she would re-take the questions. Being my first Carte Blanche shoot, it never occurred to me that I would need to do write down the questions as they were fired. Fortunately, as the camera was about to roll, Ruda simply looked up at me, lifted an eyebrow and gently asked, “You have the questions, right?” (meaning, “Bring out a notepad and write these questions down … Pronto!”). Had she not made that one comment, we would have rolled on an entire investigative interview and not had the anchor’s exact questions to cut back to in edit.
At that moment, I learned a lesson in ‘unconscious incompetence’ — when you don’t know what you don’t know. It’s a dangerous place to function, especially when leading a team of people. Since then, I’ve made it a priority to always understand as much as possible about a task, project, situation…and then to understand where the gaps in knowledge, skills and experience are. Then I work to upskill and educate myself and our teams — enlisting external resources where necessary. The intention: to get to a place of ‘conscious competence’ (where you know what you know) and ultimately to a place of ‘unconscious competence’ — that wonderful space where individually and as a team, you have so much experience in the skill that it becomes second nature.
Admittedly, I spend a lot of my life operating in the ‘consciously incompetent’ space, recognizing a deficit in knowledge or skill and working to address the deficit. And, I think, that’s a good place to be. It encourages growth.
Can you describe how you or your organization is making a significant social impact?
I’ve always believed in active citizenship and public service. So, as a company, Blink Pictures actively seeks out work that has a social impact through storytelling.
Every now and again, however, a story finds us. A story that grabs you by the heart and compels you to make the impossible possible. Tin Soldiers is one of those stories — a documentary film about people with an ultra-rare condition — Fibrodysplasia Ossificans Progressiva (FOP). We didn’t realize, when we embarked on the journey of telling this story, that it would become a global movement to end isolation for thousands of people all over the world.
FOP is a devastating, progressive condition that slowly turns connective tissue into bone ‒ sending children into a steady spiral towards complete immobility. As their joints slowly solidify, they become living statues.
The film is a compelling tale of courage, set against the backdrop of medical science, telling the stories of real-life ‘Tin Soldiers’ overcoming human frailty to show that within a body under siege can surge the spirit of a survivor.
Beyond the screen, it’s a global call to action. A call to search for the potentially thousands of people all over the world who are living without a diagnosis. Suffering in isolation.
Through the making of the documentary, the Tin Soldiers FOP Outreach Program was born.
A registered Non-Profit Company, the purpose of Tin Soldiers FOP Outreach is to roll out a global awareness and patient identification program. The program provides education and support for patients, medical professionals, and the general public to raise FOP awareness, and offers access to resources, a network of support and information on medical care.
While the focus is on FOP, the program seeks to raise awareness and acceptance of rare diseases in general — ending isolation and promoting access to improved medical care for thousands of rare disease patients and their families around the globe.
More than a film, Tin Soldiers ignites a brave search for those not yet diagnosed in some of the world’s most under-served communities.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
No FOP story is complete without including one of its central protagonists, Amanda Cali.
The history of FOP is, in itself, a remarkable tale about bravery and perseverance. As is true of all ultra-rare conditions, diagnosis, treatment and the search for a cure are uphill battles. So, for medical science to have advanced to the point of having several treatments in clinical trials in the space of three decades, is a feat nothing short of incredible — a feat made possible by the sheer determination of a small group of clinicians, researchers and FOP families (most especially the parents).
One of those parents is Amanda Cali. Her son, Ian recently celebrated his 30th birthday. He was diagnosed when he was 5 years old. At the time there were only 83 people diagnosed in the whole world. As Amanda describes, “There weren’t movies. There weren’t videos. There was no Internet. It was a different time.” And yet, despite the odds, Amanda doggedly led fundraising and advocacy efforts — efforts that in no small part have helped shape a horizon in which a treatment is not only possible but imminent.
The Tin Soldiers documentary was made possible by her vision and a personal mission to make it happen. The same is true of the Tin Soldiers FOP Outreach Program. Amanda’s impassioned leadership and determination are the reason we are on this journey today, in search of the missing and in support of the vulnerable.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
While the focus is on FOP, the Outreach Program seeks to raise awareness and acceptance of all rare diseases. We hope to end the isolation of these victims, as well as help them gain access to better care.
Partnerships with governments, patient advocacy groups, faith-based organizations, global humanitarian programs and communities are key to the success of the Program.
You don’t have to be personally affected by FOP or even know someone who is to get involved and show you ‘Care about Rare’.
The FOP Outreach Program architecture delivers a global-centric approach to raising awareness, education and patient identification. The Program provides a blueprint for raising awareness, so we invite all roleplayers to ‘Raise the Bar for Rare’ by:
- Spreading the word via their networks and social media platforms
- Helping to end isolation by working with our teams to join community-based programs aimed at raising awareness, breaking down barriers, removing stigmas and offering support, so that the hidden and the isolated have a chance to be discovered.
- Support in raising much-needed funding to keep the program alive.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership is nothing more or less than getting a group of people to work together to achieve a common goal. Simple, right? Perhaps not! I’m a mother of four and often just getting them all to work together to set the table is an accomplishment of some proportion.
I believe there is an art to leadership and that, for the most part, it cannot be defined; there is no simple right or wrong and the ‘magic wand’ to leadership does not exist. I do believe, however, that leadership can be inspired, and that inspired leadership can motivate people to find fulfillment in working towards a common purpose.
I’ve been privileged to have both worked with and witnessed in action some great leaders — and, sadly, some really poor ones — from newsroom editors to sporting captains, captains of industry and political leaders.
Without exception, the leaders who wielded ‘power’, manipulated, undermined and micro-managed created divisiveness, distrust and toxicity within their teams. They led through fear and were followed out of fear. People working ‘for’ them were demotivated and unhappy. Most left the moment another opportunity presented itself.
On the other hand, the leaders who successfully inspired and motivated teams into achieving a common goal displayed a commonality of characteristics.
They were courageous and led from the front. Always. They were consistent and respectful. Always. They mentored, encouraged and protected their teams. Always. Most importantly, they were impeccable with their word. Always.
Those leaders were supported by people who cared about their work, took pride in what they did and were passionate about achieving their goals. The people working ‘with’ leaders like these were dedicated and loyal.
I learn lessons in leadership every single day — mostly from the people I rely on to achieve our organizational goals and deliver on our promises.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
1. Passion is great and essential to success, but you also need an education in business.
I went into business by default and not design. My intention was to become a journalist, which I did, and then life took me on a storytelling journey that, by necessity dictated that I start a company. An Economics 3 degree aside, I was not prepared and had to teach myself many lessons in business along the way — mostly from the school of hard knocks. Get a mentor, go on a course … Do whatever it takes, but get some lessons in business. Specifically … Learn about contracts and how to read them, understand the accounts and know how to read a balance sheet, learn how to budget and reconcile, learn excel and learn it well.
2. In order to grow any organization, you will have to market yourself.
People may like the product, they may support the cause, but ultimately, they must believe in you. They will invest in you. So make sure that you are authentically-aligned with the goals of the organization. Authenticity sells. Everything else is a smokescreen. Furthermore, only you can do it. As an introvert, I’ve always struggled with this, so it’s been a lesson hard-learned. I still struggle with it.
3. Embrace the left-field, truly think outside the box and trust your gut.
Some of our biggest successes and greatest achievements were born from a ‘What if it were possible?’ thought.
4. Don’t be intimidated by ‘position’ and ‘power’.
Be professional, be prepared, be respectful and be honest (even with the tough stuff), but never shrink. Stand in your power. They will respect you for it.
5. Don’t sweat the small stuff — even when it feels personal (and sometimes it is).
So often we spend time and energy on conversations or ‘crises’ that are, in the bigger scheme of things, of little consequence. Whether you’re running a business or building a non-profit, everything feels massive because this is ‘your baby’ and you want it to thrive. Perspective is important. This is a lesson I have to remind myself of daily.
6. Adapt or die. Be humble. Be Grateful.
COVID-19 is the perfect, extreme example!
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. :-)
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
There are a few, so I’ll start with the obvious …
“A man who stands for nothing with fall for everything.”
- Malcolm X
“The world will not be destroyed by those who do evil,
but by those who watch without doing anything.”
– Albert Einstein
Simply, these words speak to me and have guided me through many of my journeys and encounters — both personally and professionally.
A quote from ‘left-field’, which is a space I especially love to play in, came from ALS-victim, Joost van der Westhuizen — someone I am lucky to have had as a friend, brother, and mentor.
One day while filming he said, “We always want to know what our destiny is. Maybe I was supposed to become famous to go through this, to do this work. If that’s my destiny, then I’m happy.”
Those words touched me the moment he uttered them. Whenever I’m afraid about where the journey will lead, I’m encouraged by knowing that if I’m walking in my purpose and standing in my truth, it will all be OK in the end.
“It always seems impossible until it is done.” — Nelson Mandela
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. :-)
Keanu Reeves. Yes, that right. Keanu Reeves! I’m not a ‘groupie’ and I can’t say I’m a fan of his on-screen work (largely because I’m not familiar with it). I am, however, impressed by what I’ve learned of his ‘off-screen’ activities. The work he does behind the scenes for sick children is especially impressive. I truly believe that if Keanu knew about the work we are doing, if he understood the power and purpose in ending the isolation and suffering of thousands of children with FOP, he would be first in line to lend a hand. He seems to me to be that kind of human being.
How can our readers follow you on social media?
Tin Soldiers FOP Outreach Program