Inspiring Life Story of Kush Kanodia – Exclusive Interview with the Disability Rights Champion

Interviewer: How has your childhood impacted you as a human being, both professionally and personally? 

Kush Kanodia: I’ve had a disability since Childhood. My disability is called multiple epiphyseal dysplasia which impacts all my joints in my body. When I was a child, I used to have severe pain because my hips used to dislocate and that used to cause extreme pain and it could happen at any time, if I just stood up off the chair or walked. So, it was very difficult for me to get involved in sports or even studying and having an active life. The disability had a really profound impact and even though there were medical interventions like hip replacements, etc that were available, they did not want to carry out the procedures on a child because my skeleton was still growing. So the recommendation was to minimize multiple operations throughout my life. They (the doctors) recommended I have an operation when my skeletons fully developed. 

So that was one significant impact and barrier. And the additional impact and barrier were that in my culture, I am from India, we talked about reincarnation and past lives. So I used to think perhaps I’ve done something bad in one of my past lives. Maybe that’s the reason for my disability. And that used to be an unpleasant and unhappy feeling for me because of course, I do not want to do bad. I want to do good. 

When I was young, my disability kind of felt like a curse when I’d ask myself why I am so much weaker, why am I so much smaller, why am I in so much pain. And kind of suffering because of my disability. It used to be a weight that held me down, making me scared of the world, and just living like a child would.

Sometimes family and parents try to protect you as a child, especially if you have a disability. And they do that for the best intentions. But I guess one of the downsides of that is that it stops a child from taking risks, it stops a child from exploring, it stops a child from growing naturally as they would trying to get out of their comfort zone. 

Those factors, from having a disability to culture made my childhood very painful and difficult when I was growing up. Also, one of the things was that because I had the disability since being a child, I never knew what the impact of the disability was upon me. I couldn’t sit down and study for long periods of time because of my hips dislocating and the pain. I was a very average student and I had average grades in my school years. I never knew that the reason for that was because I couldn’t sit down and study for long periods of time, it was only when I had my hips replaced in 2002 so when I’ve got computer-aided design hips, I started to excel in everything I’d do and when I went back to university, I got an MBA with distinction, I am now an alumnus with Oxford University and loads of other things. I never knew the kind of difference until I had the hip replacements. 

Interviewer: Can you tell me a little bit more about the organization you’ve co-founded, Choice International?

Kush Kanodia: After I got my degree, I was originally an investment banker. I worked with numerous multinational organizations such as BBC, Bloomberg, Lehman Brothers, and Morgan Stanley. I was originally in Morgan Stanley when Lehman’s collapsed.

They offered me opportunities around the world. But I decided to take redundancy, and I contemplated what was the purpose of my life, was it just to have a bigger house or a bigger car? And I thought that’s ridiculous. I wanted to add social value. And that was the reason for establishing Choice International. Because I traveled around the world, India, China, and around Europe, and I saw the inequality, I saw the poverty, because I am a disabled person, I saw the lack of opportunities and challenges for disabled people. That was the inspiration behind establishing Choice International, which is basically action, rights, and development for disabled people around the world.

What we wanted to do was use innovative ideas that we have in the UK, in Europe, and in America, to help the disabled people in the developing world’s places like India, because I am originally from India. So I set up the organization with two other disabled people, who also have their roots in South Asia. 

For instance, the UK Government has Access to Work so the idea is that if there is a barrier if there is an additional cost for a disabled person in the employment, a wheelchair user, the cost of a taxi ride, or the cost of some reasonable adjustments, the Government has a separate fund that pays for those costs. An employer doesn’t see it, it creates a level playing field for the employer because they don’t have that additional cost base, the Government pays for those costs. So it helps in the employment of disabled people in organizations by removing any barriers and costs. The idea was to use initiatives such as empowering disabled people into employment with similar schemes we’ve been on in the UK for organizations such as Scope and Disability Rights UK. We wanted to replicate that through Choice International in places like India. 

One of the challenges that we had that we didn’t fully understand before we went to places like India was that the disability rights movement and the culture are still much more regressive than it is in the West. They are still using quota systems and quota systems result in very low-paid jobs.

What we realized was that we need to focus on changing hearts and minds first the attitudinal barrier. Of Course, the attitudinal barriers are still present in the West but I found them to be more pronounced in some developing countries. That was one of the pivots we did. We worked on training diversity, equality, and then we actually decided to go break through the mental barriers via sports. We found that to be more transformative initially.

The other challenge was building the brand. We did develop the brand in the UK through getting fundings, with Big Lottery, and working with local governments in the NHS. And providing equality and diversity training. We really developed our skillset and our knowledge and used that to create change internationally. And then the idea emerged to start Choice International in India. And to work in other developing countries and continents such as Africa. 

Interviewer: Other than all the amazing awards you’ve received including being selected as the top 10 most influential BAME (Black, Asian, Minority Ethnic) Leaders in technology at Parliament in 2018, what has been the accomplishment you’re the proudest of throughout your professional career?

Kush Kanodia: I will give you three answers to that. For the first answer, I was the torchbearer of the London 2012 Paralympic games. I was the last torchbearer. Though, it was in a quite strange situation. Through my work with disability, in 2012, I was on a 10-day silent meditation retreat where you don’t have access to your phone or your internet. On those retreats, they don’t give you dinner, only breakfast, and lunch. And on Day-7, I was going to my room for lunchtime because I just had all I really needed with breakfast, so they basically had an issue with me not having lunch. They ended up kicking me out on Day-7. 

Even though I was following their rules. On Day-7, I ended up switching on my phone, and I did not have access to the outside world for seven days. When I switched on my phone after seven days, I received a phone call from the Paralympic Committee, saying that I’ve been selected to be a torch-bearer for the Paralympic games. They had been trying to contact me for seven days. Imagine, I’ve been on the course for seven days. They said I was the last person in the London 2012 Paralympics games to accept to be a torchbearer and if they couldn’t contact me that day, they would’ve had to give the opportunity to somebody else, and they asked if I’d like to be a torch-bearer. And I was like, YES! 

The thing was, that I had left investment banking, I had set up Choice International. From having a high prestigious career and a regular income, to literally earning next to nothing and you know really slugging it out every day to try and create an impact. Suddenly when I became a torchbearer, all these doors and opportunities started to open to me that weren’t available before. I would say that is the first achievement I am most proud of. 

The second achievement that I am most proud of is the #NoWheelchairTax campaign. I will further elaborate on this campaign. In 2019, I was a Governor for Chelsea Westminster NHS hospital, which is one of the leading NHS hospitals in England and the local area has the highest income inequality in the country.

They told me that they were going to start charging for the disabled parking even though I spent one year advising them not to. I had given them evidence based on the correlation between disability and poverty, the ten years of austerity in the UK that amounted to a systematic violation of disabled people’s rights and that was according to the UN. I went through the entire evidence on why they shouldn’t do it, but they still wanted to do it. Then I tried to go through the values of the organization of being ‘unfailingly kind’, that didn’t change their decision. Then I tried to go through the corporate governance aspects. 

I was an elected patient governor by the patients, the members of the trust. So I got the Council of the Governors to strongly oppose it. That still didn’t change their decision. When they said they will start charging, I told them that if they do this, then I will start a national campaign to abolish all disabled car parking charges in all NHS hospitals in England. Chelsea Westminster is one of the leading hospitals in England.

They just stared at and said, “You’re welcome to do what you want”, like who challenges and changes the NHS? They did not directly say the end bit, but it was basically what they were thinking. So I said, “fine, I am also connected with being a disability rights campaigner, and had just finished being a trustee for three years with Disability Rights UK, and I had kept them aware of what was happening in the NHS of Chelsea Westminster. Then I was appointed as an ambassador of Disability Rights UK to lead this campaign.

Approximately a week later, there was a summit in the Kingsfund, where Matt Hancock, the Minister of Health in Social Care was the speaker. When he did his keynotes speech, they gave an opportunity for a Q&A. I jumped up and told him about the campaign, and also gave him the evidence, told him what’s happening in Chelsea Westminster Hospital and I asked for his support for the campaign. When I spoke about the campaign, the entire audience applauded the campaign, and when I asked the Minister for his support, he did not answer my question.

In the same event, we had Sir Simon Stevens, who was the Chief Executive of NHS England, I think he resigned last month and was the so-called most powerful person in the NHS. I had a private conversation with him and again told him about the evidence of what was happening in Chelsea Westminster. And I asked for his support but he ended up laughing in my face for about five minutes, “like how audacious you think you are to challenge and change the NHS?” He didn’t say that, but that’s basically what he thought. But the world works in mysterious ways.

In the audience, there were journalists from the Times and Telegraph. They contacted me on LinkedIn, asking for an interview, so I actually scored an interview with the Times and the Telegraph through the conference. They wanted exclusivity. So I said, fine that is not a problem. Then I had the Daily Mail contact me the following day. So I passed the Daily Mail to one of my other colleagues, who was a Disability Rights UK Trustee. We ended up being published in the Times, the Daily Mail, and the Telegraph on the Monday. 

And then we had BBC London Radio contact us on the following day. When we had the next board meeting with Chelsea Westminster Hospital, I brought in the papers. I showed them the papers and they decided to delay their decision. They set up an accessibility working group and all credit to Chelsea Westminster NHS Foundation Trust. Their focus then shifted to be an exemplar of accessibility. So through the accessibility working group, they focused on the physical and virtual environment, the patient journey, and how to make Chelsea Westminster one of the leading accessible hospitals in the country. 

Then I started to work with many disabled people’s organizations both locally and nationally. I also worked with MPs of all the main political parties, from Labour to Conservatives to the Liberal Democrats. When the general elections were called in 2019, the focus turned to get the campaign in all the manifestos which we achieved, from Labour to the Conservative manifestos and the Liberal Democrats actually agreed to the campaign the day before the general election.

The campaign was implemented into law, at the end of April 2021. It was supposed to be last year, but they delayed it for a year. The campaign transformed 206 NHS hospitals in England, helping 2.5 million disabled to access critical health care during the COVID-19 pandemic, and it transformed one of the largest health systems in the world. It was a truly transformative system’s change, being at one of the most critical times for disabled people to access healthcare in a pandemic. 

The third achievement that I am most proud of and is linked to that campaign. It was during that time when I was selected by Shaw Trust’s Disability Power 100, as the second-most influential disabled person in the UK. And there are 14 million people with disabilities in the UK. That was a profound achievement and honor for me which helped catapult the campaign to create a system change, my primary purpose was always to help others. So, if I get an award or an achievement and that helps me to help others, then I think of that as really beneficial.

When I became a torchbearer for the Paralympics, that transformed my relationship with my disability. From my childhood, I thought of my disability as a curse. However, I later reframed it into a blessing because I realized this when I looked back, my disability had given me all these wonderful attributes.

It helped me to become humble. It helped me become grounded. It helped me to be compassionate, determined. It helped me refocus my career from investment banking to disability rights. If it wasn’t for my disability, none of that would’ve happened. So now, I am very grateful for my disability. Rather than thinking of it as a weight holding me down, now it is something that lifts me up and just gives me opportunities, it gives me empowerment. It gives me focus and clarity in what I do every day. 

Interviewer: Other than being a social entrepreneur, you have also volunteered for numerous non-profit organizations, charities, and social enterprises. Can you tell us about the best organization you’ve worked at?

Kush Kanodia: I will give you the names of a few organizations I’ve worked with. The first organization is where I am a Chief disability Officer, Kaleidoscope Group. This great organization focuses on empowering employment opportunities for individuals with disabilities. It focuses on consultancy and advisory to help make products and services more accessible for disabled people. It has a foundation, like a charitable arm. That helps give donations to disabled people.

I believe the place it really differentiates is the investment aspects. Kaleidoscope Group invests in disabled entrepreneurs. And I think entrepreneurship is very critical for disabled people. There hasn’t been enough focus on entrepreneurship. Because in our traditional employment, there are still many barriers and inaccessibility. Sometimes, there are conducive routes to employment for disabled people as entrepreneurs. Kaleidoscope Group is one of the first organizations globally that focus on entrepreneurship for people with disabilities and I think that is great.

The second organization is linked to my journey of being a Torch Bearer, it is called the Global Disability Innovation Hub. The GDI Hub is the legacy organization from the Paralympics in London 2021 and is one of the founding partners of the new global movement, #Wethe15, in relation to disability rights and inclusion globally. It was launched last week on the 19th of August in time for the Paralympic games, which is a ten-year initiative with some of the largest organizations in the world. #Wearethe15 highlights the fact that people with disabilities comprise 15% of the population of the world.

Even though statistically, I’ve seen the population with disabilities reach about 20% to even 25%. We are 1.2 billion people in the world. And I’ve actually seen the figures reach 1.85 billion people with disabilities. And the purchasing power of people with disabilities is actually $13 trillion. It shows you the significant size and scale. Even though we are the largest minority group, we are still the most marginalized and discriminated group.

And now is the catalyst for change. The motto for London 2012 was to ‘Inspire a Generation’, and #Wethe15, I see this as the catalyst for change for the generation. 

The third organization I’d like to highlight is the charity called AbilityNet. COVID-19 has shown us that the virtual environment is just as important as the physical environment. AbilityNet focuses on making the virtual environment accessible for individuals with disabilities working with some of the largest tech companies in the world such as IBM, Microsoft, BT, and more. They provide free services to disabled and elderly people where they go into their homes and actually set up the hardware and software and make it accessible for disabled people. I think it is such an enabler technology. It is really transformative. It transformed my life and it will transform the lives of many more individuals with disabilities in the future. 

The fourth organization I’d like to highlight is CAFE – the Center for Access to Football in Europe. This organization works with some of the largest football organizations in the world, making football tournaments accessible for people with disabilities. We have the Euro 2020 this year where we were the finals were in Wembley. Next year we have the FIFA World Cup in Qatar. By making these tournaments accessible to people with disabilities.

For instance, I am a Chelsea Fan. It was very empowering and transformative for people with disabilities to watch your local football team to support them, to go on that journey with them, to have that aspect of inclusion and accessibility. I believe this community and journey, is the power of sports. We can see the transformation through things such as the Football and Paralympics, and how it has empowered so many lives. 

The fifth organization I’d highlight is that I am a Non-Executive Director for the NHS Trust for mental health and learning disabilities. And I believe healthcare is so critical. With the COVID-19 pandemic, we have seen a disproportionate impact on people with disabilities. 3 out of 5 all Covid-19 deaths were of people who had a disability. We are seeing a new pandemic in relation to mental health. We’ve seen a significantly disproportionate impact upon people with learning disabilities. I believe healthcare is a really significant aspect at any time, especially in times of the pandemic. Working with this organization, we were very honored to receive the HSJ’s Mental Health Trust of the Year this year for Hertfordshire partnerships foundation trust, during the most challenging time for the NHS.

What I do as a social entrepreneur, I developed a portfolio of careers that focuses on health and well-being, technology, sports, employment, and entrepreneurship. I tried to build connections through these different industries that can sometimes be siloed, to create change for people with disabilities, and I believe that is what we need to do as a society now. We need to create this transformative change that goes across borders and industries for a true transformative systems change. 

Interviewer: One of my most favorite things about the work you do is how you’re also an advisor in the Museum of Happiness to individuals with disabilities on how to cope with depression. You’re doing a wonderful job! Can you give a word of advice to the readers on how they can cope with negative thoughts, or feelings, especially during the challenging times of COVID-19?

Kush Kanodia: The Museum of Happiness is an amazing organization that focuses on happiness and positivity because having positive psychology is so fundamental. I will give you a comparison between it and the NHS. The NHS is very reactive. When a person becomes unwell, then the person goes into hospital, then the tariff starts and the support starts. But as a society, we need to be proactive. We need to focus on our well-being and our happiness.

So we don’t actually end up going into a hospital. And that is what organizations such as the Museum of Happiness focuses on. Some of the points that I’ve found to be extremely beneficial, having a Buddhist philosophy and way of life, so I focused on things such as Mindfulness and Meditation. I find that to be very helpful. If a negative thought comes, to have the understanding that I am not the negative thought. The negative thought is something that has arisen. You learn about things such as impermanence, like something that has risen will eventually go. So you don’t need to attach yourself to negative thoughts, you don’t need to react to them.

You can just be aware of it with a balanced and calm mind. When a person does that, even if he suffers from pain, like having a disability, one of the things I’ve realized is that if you look at and be aware of the pain and generally the threshold it is in is manageable. Sometimes it goes beyond the threshold that is not manageable, but from my personal experience, that has been less than 1% of the time, 99% of the time, the pain has been manageable. But when we add emotional pain to the physical pain, when we start to think “what if in the future my pain gets worse?” “What if my operation doesn’t go well?” “What could’ve happened if I had done this?” or “What could’ve happened if I had done that?”

When we are in the past and the future, it is an area of imbalance and it can cause that emotional pain. But when we focus on and accept the “present,” when we’re “aware” of the present moment such as the physical sensations or the breath, it is very neutral, it is very balancing. That stops our mind from going into a panic, it stops the negative spiral of mental health developing. I found aspects such as having a balanced diet to be very helpful. I found aspects such as spending time in nature, going on walks, spending time with trees, plants, and animals, children, and observing nature by being connected to it are very therapeutic. I’ve changed my friend’s circle. 

The Museum of Happiness is a community. If you have a positive friend circle, if you have a friend circle where you can show vulnerability and your pain, and people are not judging you and attacking you, but they’re actually supporting you and helping you, that helps you to deal with your challenges. It helps you to share. 

One of the things I’ve noticed is that when people go in negative spirals and lives, it is when they stop sharing what’s happening inside themselves with their friends and family out of fear of being judged or attacked. However, we can stop that when we have a wholesome environment and communities where we can share without the fear of people taking advantage of us. I think communities play a powerful role in helping to cope with negative emotions.

I am also very into spirituality, I believe those moments of silence and stillness to be very transformative for me. Because like I said, going on the 10-day silent meditation retreat, I believe also helped me transform my life. Sometimes, taking a step out of the everyday rat race, running for money, or all the other materialistic things. Actually spending time within, finding out who we are, and just spending some time with ourselves, I found that to be very helpful for me to find my happiness, and my purpose, and peace within myself. 

Interviewer: Health experts fear that individuals with disabilities might face discrimination from nurses or medical staff in the upcoming years as the cases of COVID-19 increase. Can you give us your opinion on that? 

Kush Kanodia: I think there is always a risk of that happening. You can see that happening within the health industry and the NHS. I believe it is a very genuine concern. Statistically, in the pandemic, in the UK, we had a number of cases of people with learning disabilities having “do not resuscitate,” put on their medical records with no consultation with the person who has the disability or with his family. We’ve seen the evidence there if you look at the life expectancy for a person with a learning disability during the pandemic, they were thirty times more likely to die from covid-19 than a person without any disability. The statistics are shocking and truly horrifying. 

The NHS has recently implemented WDES the Workforce Disability Equality Standard. This is the first time they’re actually measuring the number of disabled people who work for the NHS, which is a great initiative because that never actually happened before, for a system as large as the NHS. If you don’t measure it, you can’t really change it. 

The second step is to have proportional representation. Not just at the bottom of the NHS, but also the managers and leaders at the top levels of the hierarchy of the NHS. We can focus on things such as the disability pay gap, doing accessibility audits of the physical environment, and the virtual environment. We can focus on co-design and co-production with lived experience service user groups and having disabled staff networks. So you start to have these feedback loops and discussions with organizations having diversity of thought to grow, learn and develop.

Because no organization is perfect. But we need to have these conversations. We need to have these conversations now because it is not acceptable in this day and age for things not to be inclusive, and for people with disabilities to not be proportionally represented. In the disability rights movement, we have a mantra “Nothing About Us, Without Us,” this must be our guiding principle. 

Organizations such as the NHS have to embody this aspect. They need to also have people with disabilities working for them, at the top of the organizations that can challenge the health systems. Just like I did with Chelsea Westminster hospital when I was a Governor. If I wasn’t a Governor at that time, I wouldn’t have known what was happening. If I wasn’t a disabled person, it would’ve been a red line for me. So if we have people with disabilities at the top of organizations as the decision-makers, then we can make sure that the health service and the health care are more inclusive for people with disabilities and the outcome are equal to non-disabled people. We shouldn’t be having lesser outcomes in the time of the pandemic. We shouldn’t be having less access to healthcare in the time of the pandemic. We should be making things more accessible, equality, and inclusion with reasonable adjustments, which is the equality act. 

One thing I find very frustrating, from multinationals to the NHS, is that there is a basic misunderstanding of the law, which is that they think if we still treat everyone equally, we are treating everyone fairly. This is incorrect. Sometimes you have to make reasonable adjustments for people with disabilities to treat them fairly and equally because the current system is unequal. There is a barrier to entry, and this is why I’ve been campaigning to transform the system. The sooner, I hope, people understand that, the better it will be for our whole society.

Interviewer: What advice would you like to give to individuals with disabilities looking to attain success in their professional endeavors, but are unable to do so due to certain challenges or discrimination they might face? 

Kush Kanodia: What are the labels that we attribute to our disability? These are the labels which we choose, are they negative or positive, are they holding us down or helping to lift us up? Let’s not add to the challenges from our impairment, environment, and attitudinal barriers from society. Can we reframe any negative labels we associate with our disability to being more positive? It is very difficult to change the world, much easier to change oneself, and when we change ourselves, then paradoxically it is also much easier to change the world.

The greatest challenge for me was internal, it was not external. The challenge of confidence and belief in myself, when I could truly believe in myself, that was what really transformed my life, because confidence is contagious. When you believe in yourself, only really then can other people truly believe in you. When people believe in you, that’s when they give you opportunities. The aspect of confidence, belief, and faith is really critical and that’s why the period of introspection, meditation, silence, relabeling and going within is very important. 

You know when they say, you’re the sum of five people, but you speak to communicate the most. I think that is also really important to find supportive and helpful people whom you have in your inner circle, who are your allies? I believe you should have allies personally and professionally, a few people, whom you speak to about issues that happen and take advice from them and guidance, not only in your industry but also external to your industry. Ask yourself, “who are your allies?” “Who are your supporters?” 

Because the truth is, sometimes our personal challenges will affect what we can do professionally. If I’m being completely honest, whatever I’ve achieved in my life, it’s not my achievement, it is the achievement of my mom, it is the achievement of my family, it is the achievement of my friends, who believed in me, supported me, helped me to get to where I am. So, if you don’t have that support network, I think it is very difficult to get to where you want to get to. 

Sometimes when you have a disability, and you’re struggling, it is very easy to say “No” to opportunities that arise. Because you’re worried you might not be able to do it, you’re worried you might not have the time, or you might fail. My advice is to say “Yes” and simply go for it. Because every opportunity you try, every door you open, you’re one step closer to where you want to be in your success. Even if it is not exactly right in relation to what you want to do. You know what they say, “try and try again”, every step you take, you are closer to your success. And that helps you to get out of your comfort zone. 

It helps you to get into your stretch zone. Even though I work for loads of organizations, and I am working six or seven days a week, and it’s too much work, having these networks, by having these opportunities, it helps me see what’s happening in the wider-macro environment. It helps me to see opportunities for change, how it helps because they have the T analogy, and originally you focus on building your expertise. But when you focus on furthering your career, the Tee at the top, the horizontal, rather than the vertical, is actually your network, it’s actually even more powerful because that’s how you create change. If you don’t have that network, is if you don’t have that ability to speak to people in different industries, and in different organizations, those real changemakers, then it becomes difficult to create real systems change. 

Be yourself. Sometimes it is difficult to share about disability, it is difficult to share about the challenges. I believe the sooner we can get comfortable with sharing and accepting who we are and the challenges we have with people around us, even if some people are not accepting, even if some people are not receptive, maybe they’re not the right organization for you to be with. Maybe they’re not the right “fit” for you, but sometimes we need to close a door for a new door to open. That just gives you a good reflection of the right environment for you and maybe the right environment will happen quicker by you expressing who you are and what you want to do and achieve. Find your values and find your purpose. I believe that is very critical in life. And the sooner you’re aligned to that, the sooner you can find your success.

Interviewer: If you could meet your past self right now, what would you like to tell him? 

Kush Kanodia: I will just give him a hug, and just tell him that everything will be okay. Even though you’ve suffered, and you’re in pain, you don’t understand why, there’s a higher purpose for your pain and your suffering that you may not necessarily learn now, but millions of people will benefit from you soon. Just carry on having faith and belief in yourself because you’re wonderful, a true blessing!

Thank you Kush Kanodia for sharing your life story with us. We will you nothing, but the very best in all of your future endeavors. Keep inspiring, keep shining.