The Philanthropy Handbook by Tej Kohli (Chapter Eight - The Importance Of Sharing Your Stories)
A Serialisation Of 'Rebuilding You: The Philanthropy Handbook' by Tej Kohli
A question that I am frequently asked is how my Tej Kohli Foundation strikes a balance between excessive ‘promotion’ and mission-essential ‘story sharing’. In answer I am always emphatic that the rate of progress of my eponymous foundation is directly correlated with the sharing of its stories and successes and ideas.
Fostering Deeper Connections
This process of sharing stories is how new projects and collaborators emerge with different areas of expertise. And it is through this multi-disciplinary international collaboration that ‘moon shot’ ideas and new and novel solutions for achieving our mission frequently emerge.
Story sharing can also be designed to foster deeper connections into the lives of individual and families who have been disenfranchised from society. Often, we find that those who are most in need of our help and support are also the hardest to reach because they live invisible lives and are disengaged from wider society.
And if you want your philanthropy to have the greatest impact, then you have to go to great lengths to connect with these people, who are most often those who need the most help. Do not assume that they will come to you.
A good example of this is the Future Bionics project of my Tej Kohli Foundation. It was early 2019 when I met with the CEO and Founder of a UK-based company called OpenBionics. I was indirectly an investor in the company by virtue of funds that I had placed within a deep tech fund called Rewired, which had backed OpenBionics with some investment during its pre-revenue days.
The company had built the next generation of low-cost bionic limbs that turn disabilities into ‘super-powers’. I was fascinated by how this technology was vastly superior to all other prosthesis available, and by the use of 3D printing during production to bring down the cost of fitting to just one third of its nearest competitor.
But what particularly resonated with me were the stories of how the Open Bionics arm was building the confidence of children who had limb difference. The arm had transformed the clinically approved prosthesis from something ‘medical’ into something cool that immediately evoked Marvel’s heroic Iron Man. Children were proudly wearing and posing with their bionic arm on social media. And it was changing the conversation when they met new people from “what happened to you?” to a more positive and emphatic “What is that – it looks super-cool!”.
I was also struck to discover that the bionic arms were not available for funding from the National Health Service (NHS) in the UK. The NHS commissioning policy implicitly assumed that ‘bionic’ meant more expensive, and thus prevented clinicians from buying them. However, improvements in technology meant this was no longer the case, and the cost of a bionic arm was actually the same as the inferior arms that the NHS was providing to young people. This seemed unfathomable to me.
And as a result, families who wanted a bionic arm for their disabled child were having to attempt to crowd fund to be able to buy the arms, and a good proportion of these crowd funding campaigns were not successful.
This bothered me greatly. So I instructed my foundation to launch the #FutureBionics program by creating a fund to provide these bionic limbs for children in the UK. Relative to the huge scale of the Tej Kohli Cornea Institute or latterly the Tej Kohli & Ruit Foundation and its ambition to screen over one million people worldwide, the #FutureBionics project would not be world changing.
My thinking was instead grounded in two factors. The first was that the NHS policy was clearly wrong, and I wanted to advocate for a change in UK Government policy that would very quickly improve the lives of thousands of children who were living with limb difference. The second was my objective not just to help the kids whose family had the wherewithal to instigate and then promote a crowdfunding campaign. My concern was for the children whose families didn’t have the resources to crowd fund. I felt sure that they were the ones for whom these arms could make the most difference, and that these children were the ones who had silently resided themselves to their situation.
The Power Of Stories
The relevance of all of this to sharing stories I am about to get to. Because from the outset of #FutureBionics it became vital to share stories about the initiative.
Firstly, this was because sharing stories enabled us to highlight the injustice in the commissioning policy that the UK government had failed to keep updated to reflect vast improvements in the sophistication and the costs of technology, to the detriment of limb different children.
Secondly, we shared stories in order to reach out to those children and families who would not normally put themselves forward for support, and to strongly encourage them to make themselves known so that we could provide their children with a fully funded bionic arm without any obligation or condition attached.
In this endeavour we were greatly helped by three amazing young people. The first was Tilly Lockey, a double amputee and online influencer with an ambition to see limb different models on the world’s major catwalks. Tilly and her family got behind our initiative and participated in photography and content production, including a video in which she instructed our first recipient, a 10-year-old called Jacob, about what to expect. Jacob was the second amazing young person who was supported greatly by his parents, and through honest discussion with Jacob and his parents, they agreed to participate in a number of media initiatives to raise awareness of the program.
Thirdly, Gracie McGonigal, an 18-year-old future musical theatre star participated in a YouTube series following her for one year as she became ‘bionic’’ and as her career as a ‘bionic actress’ started to take off. All three young people were an inspiration.
Some major news outlets created videos and undertook a photographic study of Jacob receiving his new bionic arm for Christmas. And then later other mainstream national UK news websites covered the story again when my foundation arranged for Jacob to be a mascot at a Six Nations Rugby match between England and Wales, which was watched by millions of people around the world and also gave Jacob the opportunity meet the UK Prime Minister Boris Johnson. We did the same again with Gracie McGonigal, who willingly shared her story across media and platforms and in doing so became something of a global ambassador for limb different younger people.
Because of this persistent, uplifting and positive story sharing, we started to receive more inbound applications from families whose non-traditional or deprived backgrounds meant that they would not otherwise have nominated their child for help. Organisations specialising in children with limb difference also started to receive inbound enquiries from families who had not engaged with them before.
At the time of writing, we have not yet changed NHS commissioning policy. But our portfolio of stories are helping to build a strong case across all medias.
Some Blunt Truths
The sharing of your stories is therefore a key part of being a philanthropist. You may get criticised for it, much like the Bill and Melinda Gates Foundation was criticised for ‘stamping’ their brand onto their programs (see earlier chapters), but this is a small price to pay. The reality is that frequent story sharing will amplify the impact that you are able to have, as well as making the issues become more ‘real’ within people’s imaginations.
This has been particularly crucial for me in my mission to defeat poverty-driven corneal blindness and cataract blindness in some of the poorest countries in the world.
The blunt truth is that most people cannot begin to comprehend the lives of those who are in need of help in the world’s low-income countries. That is not because of an uncaring nature, but simply because the everyday lives of people in poor communities are too far removed from the everyday life experiences of people who are fortunate enough to live in the developed West.
Yet to solve a problem, you must first be able to point at it and name it and describe it. You need to be able to properly identify it and to understand it inside and out. And sometimes a developed Western bias makes it very easy to comprehend these challenges completely wrong.
This was the thinking behind the extensive story sharing that we adopted for the Tej Kohli Cornea Institute and latterly the Tej Kohli & Ruit Foundation.
Between 2016 and the end of 2019 the Tej Kohli Cornea Institute welcomed 223,404 outpatients, completed 43,255 surgical procedures, collected 38,225 donor corneas into its eye bank, utilized 22,176 donor corneas, trained 152 clinicians, published 202 papers and gave 892 educational presentations.
The Tej Kohli Cornea Institute was uniquely adept at solving the problem of reaching people living with blindness or visual impairment in the hard-to-reach rural areas where 66% of Indians live. In 2019 alone, 5,736 patients were cured of corneal blindness because eye care clinics were taken out into remote rural villages in India by mobile diagnostics vans. Makeshift operating theatres also undertook corneal transplants, often in places that were entirely unreachable by other NGOs.
This kind of information provides a decent analytical capture of my mission and the impact that we are able to have, but it is not until you watch the videos of real life patient stories on the Tej Kohli Foundation YouTube channel that you can truly start to understand and to ‘feel’ what the mission to combat poverty-induced blindness is really all about.
We realised this early on, and so we provided a contract to a fledgling video production company in Hyderabad. This contract gave them enough visible revenue to create lots of secure jobs, which in itself created elevated the lives of those involved. It was also beneficial for local people to tell their ‘local’ story to the world, as it removed any inherent Western bias and resulted in content that illustrated the full unvarnished truth.
In one example the Tej Kohli Cornea Institute cured an entire family of seven brothers and sisters of severe visual impairment. And when you watch the video to see how the members and spouses of that family were working so hard to support each other, and the immediate and elevating impact that them being cured had on their lives, that people accept the ‘reasons to believe’ in the mission to end poverty-driven blindness.
In another video on the Tej Kohli Foundation YouTube channel we learn about a teenager called Shivar. Previously he had been unable to study due to problems with his vision. His father worked hard and did odd jobs to afford the expense of taking Shivar to see doctors at different hospitals in the hope of obtaining a diagnosis and treatment. Eventually they found the Tej Kohli Cornea Institute and Shivar received a free corneal transplant and gained significant visual improvement. With his vision largely restored, Shivar's confidence grew. He studied hard and got good grades at school and now he is on track to become a successful Civil Engineer, which was always his dream. The story of the video shows in a way that facts cannot, the true impact of intervention.
You Can’t Operate In A Vacuum
I could fill a book retelling the stories of people who have been helped by the Tej Kohli Cornea Institute and more recently the Tej Kohli & Ruit Foundation. Both organisations now operate accounts on YouTube, Instagram and also on blogging site Medium where such stories are shared with persistent regularity.
Stories like these need to be told and need to be shared because they help to foster a better understanding that ultimately brings all of us much closer together. And of course, it is too much to expect technology pioneers in London or Silicon Valley to be able to develop solutions to major global problems if they are unable to grasp what those issues really are. In the case of poverty blindness, the solution given is medical, but the real ‘solution’ is the improvement in the happiness and prospects of individuals and their families. It is vital that the pioneers of solutions can understand this - even from miles away.
You must share your stories and in doing so you must also have a reasonable tolerance for the possibility that you may receive criticism for doing so. In my own experience any criticism will only come from those with a very narrow view of the world against which they are reconcile the lives of others.
Ultimately a successful philanthropist cannot operate in a vacuum. What may seem like self-promotion to one person may prove a source of inspiration to someone else who can bring a specific expertise or new innovation to the table to help to solve major human challenges.