Levelling the playing field
Social entrepreneur Kush Kanodia on tackling system change, how being a torchbearer at the 2012 Paralympics changed his outlook, and his favourite quote from Dune.
How do you identify as disabled, and what does it mean to you?
My disability is called multiple epiphyseal dysplasia. It basically means that all my major joints have grown differently, which used to result in my hips dislocating when I was very young, causing significant pain.
As a child, I never identified as disabled. The word “disability” can have such negative connotations in our society, so I thought that it meant that you need extra support or aren’t capable, rather than focusing on your abilities; and my mindset was always that I can do anything that a non-disabled person can do.
I never wanted to think of myself as different to other people. I may not be able to run or jump as far as everybody else, but that doesn’t mean that it has any kind of impact on my dreams and visions and what I want to achieve in my life. I think for me it was actually very helpful not to identify as disabled when I was young, because it helped me to take risks, to explore, and to live as full a life as I possibly could without any kind of limiting beliefs or mental barriers that people try to place upon you, if they think you’re a disabled person.
The thing that changed my way of thinking was being selected as a torchbearer for the Paralympics in London 2012. It made me realise that my disability has actually given me all these wonderful qualities: I’m humble, I’m balanced, I’m determined, I’m compassionate. Being disabled has made me transition my career: when I left university, I went into the corporate world initially and worked for lots of multinational organisations, but now I’m a disability rights campaigner who has managed to change a number of significant systems and helped millions of disabled people. These are all blessings that have come from my disability, so I reframed the relationship from a curse to a blessing, and from having negative connotations around the word disability to having positive connotations.
Empowering disabled people to have confidence and belief in themselves
Tell us a little about how you transitioned away from working for large corporations to becoming a campaigner for disabled rights.
Initially, I joined the BBC World Service and then moved from media organisations to investment banking. I did an internship at Bloomberg then worked at HSBC, Lehman Brothers and Morgan Stanley. The problem with the corporate world I found that most don’t actually understand the Equality Act: their premise is that if we treat everyone equally then we’re treating everyone fairly, and they don’t understand that with disability, actually sometimes you need treat people differently and to make reasonable adjustments to treat everyone fairly. That was one of challenges that I had in the corporate world and that was one of the reasons I transitioned to being a disabled entrepreneur.
I left investment banking and traveled around the world. I went to India, China and Europe and saw the poverty and inequality in the world and the challenges that disabled people face. That’s when I decided to start my first enterprise, Choice International, to focus on international development, disability and inclusion. The focus is on countries like India, to see how we can help disabled people and to improve quality of life using some of the innovative ideas from the UK, Europe and America: things like Access to Work, helping to promote disable leaders and changing mindsets and cultures. We also empower disabled people to have confidence and belief in themselves, because I often found that disabled people lack confidence and self-belief due to society, which has repeatedly told them that disability means you’re not able or you’re less capable than everybody else. The focus is always on what a disabled person can’t do rather than focusing on what a disabled person can do. The focus is never on the unique skillsets associated with disabled people: things like resilience, perseverance, motivation, problem solving. There are so many wonderful attributes that disabled people have and use on a daily basis.
Now I’m also a disability rights campaigner and I’ve been fortunate enough to have transformed a number of significant systems in the UK.
For example, I was a trustee of a charity called Level Playing Field. A lot of the large Premier League football clubs would just have one or two wheelchair spaces, a few disabled toilets and disabled access: that was all they needed to meet the requirements of the Equality Act, but if you have a 40,000-50,000 seater stadium, it’s not proportionally representational to the number of wheelchair users in society. The football stadiums would look at profit and loss: for each wheelchair space you could have an equivalent of maybe 6-8 non-wheelchair spaces. We managed to change the system by working with the House of Lords, raising a bill, and working with media organisations and always being foremost a disabled persons led campaign – Nothing About Us, Without Us, our guiding disability Mantra. That’s the first system that I helped transform: it included twenty Premier League clubs back in 2017, and the guidance implemented for accessible stadia for all the future Premier League clubs.
The next significant system I tackled as at Chelsea Westminster hospital, where I was a Governor. They wanted to start charging for disabled parking at the hospital. This is the area with the highest income inequality anywhere in the country. I showed them evidence of the correlation between disability and poverty and explained that there has been a systematic violation of disabled people’s rights since austerity and that less than 30% of our tube stations are accessible. Eventually I said that I would start a national campaign to abolish all disabled car parking charges in all hospitals in England. They told me I was welcome to try, but they were not going to change their policy and would now charge for disabled parking.
After I publicly questioned Matt Hancock, who was then Minister of Health & Social Care, the story was picked up by the Times, the Telegraph and the Daily Mail, and we also did an interview for BBC London Radio. I began to work with MPs from all the main political parties to continue raising awareness. When the general election was called, we managed to get the campaign included in the Labour and Conservative manifestos and Liberal Democrats also agreed before the elections. The guidance changed at the end of April this year, making it mandatory for all 206 hospitals in England abolish disabled parking charges, helping 2.5 million disabled people to access critical healthcare during the covid-19 pandemic. It would have been a significant system change anyway, but to have that happen in the chaos that is the current pandemic was truly amazing.
Recently, I launched a new campaign around the ultra-low emission zone (ULEZ) in London, which comes into effect on 25th October. I’ve been in discussions with the Mayor’s office for blue badge holders to have the same exemption that they currently have for the congestion charging zone. Which is that they can exempt two cars per day, whether it’s their own car or someone who is assisting them. At the moment they’re only giving an exemption if the car is tax classified as disabled, and the problem with that is there’s no flexibility in it. Lots of disabled people don’t own a car, so you may hire a car or you may be using someone else’s car or receive care and support from someone with a non-compliant car. I’m launching a crowdfunding campaign with Crowd Justice which is going to raise money to seek legal advice from an eminent QC to clarify our human rights and Equality Act in regards to ULEZ.
How do you describe your business?
I’m a social entrepreneur and I’ve developed a portfolio career, focused on four main areas. One of my portfolios is health and well-being. I’m a Non-Executive Director for a mental health and learning disability trust called Hertfordshire Partnerships NHS Foundation Trust, and I’m also on the public advisory board for Health Data Research UK, which is the national institute for health data science.
Another of my portfolios is technology. I’m on the public advisory board for the Global Disability Innovation Hub, which is the legacy organisation from the London 2012 Paralympics. It’s a consortium led by University College London and we’re one of the founding partners for the Global Disability Inclusion Campaign, We the 15, that was launched at the few days before the Tokyo Paralympics 2021. I’m also a trustee for AbilityNet, which helps to make the virtual world accessible for disabled people.
Another of my portfolios is sports. I used to be a trustee of Level Playing Field but now I’m a trustee for their sister organization, CAFE, the Centre for Accessible Football in Europe. We work with UEFA for and FIFA to make their sporting tournaments more accessible for disabled people. We will be working in Qatar for next year’s FIFA World Cup.
The last portfolio is employment and entrepreneurship. I’m the Chief Disability Officer for an organisation called Kaleidoscope Group that focuses on investing in disabled entrepreneurs, helping and empowering disabled people into employment and providing consultancy services for organisations to make their products and services more accessible. I’m also a trustee for the foundation, so if a disabled entrepreneur has an idea that’s more of a charity or social enterprise, then a grant maybe more appropriate than the traditional investments.
You have to keep trying...
Who or what inspires you?
I would have to say my mum. She constantly demonstrates true unconditional love that doesn’t expect anything in return. That really inspires me in relation to the campaigning that I do. When you’re trying to transform systems, you don’t know how long it’s going to take. You just have to try again and again until it actually happens. The Premier League took ten years, the NHS three years. I don’t know how long the London campaign is going to take.
I find children very inspiring. They live completely in the present moment, just playing and living life to the full. Most people are always too busy, thinking about the past or the future and worrying about things that they can’t change, rather than just seizing the day and being aware of all the possibilities that we have in this present moment and in every moment.
I find inspiration in nature: going into an environment with trees or water and finding that stillness and silence. It helps me to wonder, reflect and realign. Sometimes you need to stop running to discover your true direction, your purpose and your balance. To know thy self.
What’s been your greatest achievement so far?
In some ways, I believe my greatest achievement is just being a good son to my mum and dad. I think it’s so important to look after our elders and give gratitude for the people that have looked after us. I care for my parents, it’s an honour to do that because they’ve looked after me. The truth is I wouldn’t have been able to achieve any of the campaigning success if it wasn’t for their belief, love and support, I stand on the shoulders of giants as they say.
Do you have a recommendation for a book, podcast or film which has helped you along your journey?
I really advocate things like meditation and mindfulness and well-being. I like spiritual books. My philosophy is Buddhist, so I take a lot of inspiration from teachers in Buddhism that help you to achieve that inner transformation and journey. I believe before we can transform the outside world, we first need to transform our inside world. Because only when we do that, can we really fully believe in ourselves and live life to our full potential.
I would also add a little challenge to your question: people look for external wisdom from books or podcasts or other teachings, but in my experience the most critical thing that’s missing from our system is our lived experience. Most systems value academic qualifications and work experience, but they don’t value lived experience. I find the thing that really creates transformative change is my lived experience as a disabled person, because those are the voices that aren’t represented, the voices that aren’t on the leadership table, but are the voices that really know the system and are truly striving to Levelling Up our society.
The last thing I’ll leave you with is a quote from the film Dune: “I must not fear, fear is the mind killer”. I think this is really important for disabled people, because our systems are designed around fear. If disabled people are receiving benefits, then there’s a lot of fear that they might lose that support for some reason, especially since austerity, when benefits have been significantly cut. There’s increasingly a narrative that a disabled person is either a super-hero or a scrounger. To me, this is one of the biggest challenges for disabled people and that’s why I believe mindset is key. You have to be aware of the fear, accept it, but not let it totally consume you. Breath, smile and learn to go transcend it and develop your own confidence, wisdom, strength and self-belief, and that’s how we fulfil our true potential.
If someone is unemployed and fearful just of getting out of bed or leaving the house, it’s very difficult to seize opportunities and to live to one’s potential. If someone can change their mindset from fear to hope, from negativity to positivity, it’s a key transformation.
I was once there myself, from there to transforming the largest health system in the world, to in 2019, being selected the 2nd most influential and powerful disabled person in the UK with Shaw Trust’s Disability Power 100. I will leave you with another of my favourite quotes.
“Sometimes it is the people who no one imagines anything of who do the things that no one can imagine.”
― Alan Turing