Three out of five COVID-19 deaths are disabled people. A conversation with Disability Rights Campaigner Kush Kanodia on the stark reality of health inequalities and the fight to transform the system.

People with disabilities have been disproportionately impacted by the COVID19 pandemic. Three out of five COVID-19 deaths are disabled people, even though they make up 17% of the population. So how can we build a disability-inclusive and accessible (post COVID-19) world? For today's International Day for People with Disabilities, we spoke to Fellow and Disability Rights & Equality Campaigner Kush Kanodia who shares an insight into the fight to transform the system for people with disabilities and how you can be an ally to the disability community.

Can you tell me a little bit about your background and your career journey?

When I was younger, I always thought I was an average student. I had average GCSEs, average A-levels, I did a management science degree that I received an average grade. And I just thought that this was who I am. But I have a disability. I’ve had a disability since childhood. And it was only when I had my hips replaced in 2002 that I started to excel in everything that I did. Before the operation, my hips would dislocate just from sitting at a desk for too long or by standing up and I was often in significant pain, where I couldn't concentrate. So that was impacting my ability to perform. But nobody ever really told me that. So, after I had my hips replaced, I went back to university, did an MBA, got a distinction with honours and now I’m also an alumnus of Oxford University. After that, I worked at organizations ranging from Lehman Brothers to Morgan Stanley. I was at Morgan Stanley when Lehman Brother collapsed, the largest corporate bankruptcy in the world at the time and that was when I realised that profit without purpose was no longer a via business model for me.

So, I left investment banking and travelled the world. I saw inequality and poverty and started to contemplate: what's my purpose in life? Is it to just accrue wealth or do I want to create social impact? So, I pivoted careers. I set up a charity called Choice International, that focuses on disability inclusion and international development. I then joined On Purpose’s Associate Programme to learn more about social impact and charities and social enterprise. I valued the aspect of learning and developing while also doing career placements. And it was actually via the On Purpose network that I got my first role within the NHS, as a management consultant. My role with the NHS gave me a really good insight into the system and how complex it can be to try to create systems change to improve accessibility and tackle health inequalities from within the system, even though for me they should be some of the primary purposes of our health system.

Today, I would describe myself as a social entrepreneur who has developed a portfolio career, with four portfolios: 1. Health & Wellbeing: I'm an Associate non-Executive Director for Hertfordshire Partnerships, a mental health and learning disability NHS Trust. I'm also on the public advisory board for Health Data Research UK, which is the new National Institute for Health Data Science in the UK, based at the Wellcome Trust. 2. Technology: I'm a Trustee of AbilityNet, a charity that focuses on making the virtual world accessible for disabled people. Furthermore, I am on the advisory board for the Global Disability Innovation Hub, which is the legacy organization for the Paralympics in London 2012. 3. Sports: I'm a Trustee for an organization called CAFE – Centre for Access to Football in Europe. We work with UEFA and FIFA to make their sporting tournaments more accessible for disabled people. 4. Employment and Entrepreneurship: I'm the Chief Disability Officer for Kaleidoscope Group, which helps disabled people to realise their career ambitions by offering them the opportunity to either find their dream job or start their own businesses.

So, because I work across multiple and diverse systems, it gives me a very good insight into what's happening in the space and future trends in accessibility, disability, and inclusion.

How did you get into campaigning for disability rights?

I've had a disability since childhood. My condition is called multiple epiphyseal dysplasia and it used to result in significant physical pain and me being smaller and weaker than everyone else. When I was younger, I used to think that I was cursed and maybe I had done something bad in one of my past lives. So, in some way, having that kind of mindset and having negative labels to disability used to be something that held me down - physically as well as mentally. However, the key transformation happened to me in 2012, when I was asked to become a torchbearer for the 2012 Summer Olympics in London. When I became a torchbearer, suddenly all these doors and opportunities started to open, literally by themselves.

And it also helped me to reframe my relationship with my disability. From considering it a curse, to understanding that it's actually a blessing and it has given me all these wonderful attributes, from being humble and balanced, to perseverance and problem solving. It actually even directed my career. Because of my disability, I pivoted to social impact, to help disabled people globally. I then joined the charity Level Playing Field, which focuses on making UK sporting stadiums accessible for disabled people. There I learned about effective campaigning, as we managed to get Chelsea and Manchester United to meet the pledge for accessible stadia and being more proportionally representative for wheelchair users. This created ongoing systemic change through the whole of the Premier League, where any football club that joins the Premier League now has two years to meet the pledge. Being involved with this campaign made me realise the significant impact I can make and gave me confidence to keep on campaigning for disability inclusion.

Afterwards, I initiated a new campaign to abolish all disabled car parking charges at NHS hospitals in England. As Governor of the Chelsea Westminster Hospital and Ambassador of Disability Rights UK, I led the campaign from its grassroots to changing the political system. As a result of the campaign the law was changed in April 2021, mandating 206 NHS hospitals, to abolish all disabled car parking charges in England, helping 2.5 million disabled people to access critical health care during the COVID-19 pandemic. In my opinion it's the most significant disability inclusion initiative that has happened in the UK during the pandemic.

So, it was actually from On Purpose, from joining NEL CSU as a management consultant and then becoming a social entrepreneur, becoming a governor for an NHS Trust and then just living my own values and purpose as a disabled person, that I got into campaigning for disability rights. I know that if I can't access health care, I can't access education, I can't access employment. I just made sure that I focused on that, even though it took a couple of years, the campaign transformed the largest health system in the world.

In your view, what are the most important challenges facing people with disabilities in the UK right now?

One is the pandemic. Three out of five of all COVID-19 deaths have been disabled people, even though we make up 17% of the population (Office of National Statistics).

Not many people know that statistic. The fact that there's such a lack of awareness   demonstrates the lack of political focus. There has been a collective failure from national government, local governments, and our healthcare system. Disability has been an afterthought even though disabled people are the most significantly impacted by the pandemic. For instance, The Coronavirus Act relaxed regulations relating to the Care Act. This basically allowed local government not to provide social care to disabled people most at risk during the pandemic and ensured  they wouldn't be liable for the consequences. You would think the reverse would happen during the pandemic, you would provide more health and support to those most in need. Furthermore, there were multiple cases of our health system placing Do Not Resuscitate (DNAs) upon people with learning disabilities in care homes and hospitals with little or no consultation. Perhaps, this is one of the reasons why Public Health England reported that people with learning disabilities aged 18 to 34 were 30 times more likely to die of Covid19? Can you think of a group more impacted by the pandemic?

Another important issue is the compounded discrimination  of disabled people. There have been multiple violations of disabled people’s rights, but there is also the cost-of-living crisis. Half of people living in destitution are disabled people. Only 1/3 of our tube stations are accessible with step free access. There has been cuts to Universal Credit, increasing food and energy prices, and a lack of access to goods and services. It's such a compounded act of discrimination against disabled people, I've started to refer to it as death by a thousand cuts and no one is really analysing the cumulative impact upon disabled people. This is the system that we have currently, we have national government, local government, and the health system, all contributing to some elements of the discrimination and hardship upon disabled people but no one ready looking at how we can best help and support disabled people during a pandemic. It's a real challenge for lots of disabled people out there to access goods, services, health care, and even just to meet the basic cost of living currently during the Covid19 pandemic.

You are currently leading the ‘ULEZ Exemption’ campaign, an initiative that calls for blue badge holders in London to be exempt from paying the daily charge to drive in London’s Ultra-Low Emission Zone. How did you start this campaign and what will it take to make it a success?

First of all, I would like to emphasise that I'm supportive of the ULEZ initiative in relation to cleaning up the air within London. I think climate action is significantly important, but just as important is climate justice and social justice, and that's the focus of the ULEZ campaign. Having this policy implemented during the pandemic, when we're going into a winter of discontent and without exemptions for disabled blue badge holders in London, is a direct act of discrimination on disabled people and a brutal violation of human rights. So, when I found out about the policy, I raised the issue with various disability charities, from Action for Disability Kensington and Chelsea to Inclusion, London, to Disability Rights UK. I also presented to the full council of the Royal Borough of Kensington and Chelsea, which led to My London and Disability News Service coverage. I subsequently created a crowdfunder justice campaign to raise £5000 for legal advice in relation to the Equalities Act and Human Rights Law. The crowd justice campaign resulted in multiple offers of pro bono legal advice and significant news coverage from the BBC, Evening Standard, to the Daily Mail and many more. The traction around the campaign led to a vote in the London Assembly last month, where we received the support of two political parties, the Tories, and the Green Party, however Labour and the Lib Dems were against the campaign and so, we lost the vote 8 to 12. Unfortunately, since then, Transport for London (TfL) has announced the scrapping of the £2000 subsidy to purchase ULEZ compliant cars for disabled Londoners. And recently Imperial College London, announced that the difference in air quality from ULEZ is only small to insignificant at 3%. Whereas for a disabled blue badge holders in London who can't access public transport and don’t have a compliant car, ULEZ is going to have a significant impact on their ability to access goods and services, access primary and secondary care or receive social care, if their carer or PA has a non-compliant car. The campaign is a climate justice and a social justice campaign, as we believe that ULEZ is having a brutal and discriminatory impact upon up to a quarter million disabled blue badge holders in London during the Covid19 pandemic, where disabled people have already been the most disproportionately impacted.

What will make the campaign successful? One, a Judicial Review – any disabled blue badge holder in London impacted by ULEZ, please contact me! We can then pursue the judicial review. From the initial implementation of ULEZ in October 2021, we only have three months, so until 25 January 2022. Two; TfL is looking for renewed emergency funding from the government by 11 December, so we're calling on the government to mandate exemptions for blue badge holders in London from ULEZ, as the precondition for any future bailout to the Mayor of London and TfL. And three, we're calling on the Equalities and Human Rights Commission to investigate immediately the discriminatory and human rights violations that are being placed upon disabled badge holders in London from ULEZ.

How can the On Purpose community get involved with your campaigns?

Please like and share our posts on LinkedIn and Twitter or other social media with your networks. Connections to any strategic contacts in Government, the Treasury or the Department of Transport or Equalities, in The Human Rights Commission, are also always welcome. But I think it's also really important to become an ally for disabled people. We are the largest minority group but the most disadvantaged. 20% of people are disabled, and 80% of disabilities are acquired later in life, with only 20% of people being born with a disability. Everybody will be impacted by disability in some shape or form in their life. And as an ally, support disabled people and challenge the environment and people’s attitudes. Challenge public bodies and your employers and networks with regards to them being accessible for disabled people. Making your workplaces more accessible, making the physical and virtual world more accessible. But also, for them being more proportionately representational to disabled people and having disabled leaders. A lack of disabled leaders is one of the key reasons I believe that disabled people have been ignored during the Covid19 pandemic. Follow the Disability Mantra – ‘Nothing About Us, Without Us’ and the Social Model of Disability.  In the disability world, we talk about the medical model and the social model. The medical model states it’s the impairments of the disabled person that disables them. In the social model, the disabling aspect for disabled people is the environments or attitudes. For instance, take a person who uses a wheelchair. If you have an environment that has steps, that is what’s going to disable that person. If you installed a lift and make it step free and accessible, the impairment is not what's disabling the person. Lots of disabled people find issues when accessing employment where the focus is often more on what they can’t do, rather than on what they can do. So positive attitudes are really important.

I believe that together we can make the world we live in more inclusive and more accessible for disabled people. I really like and support the theme of today’s UN Day for People with Disabilities 2021, it's ‘leadership and participation of persons with disabilities towards an inclusive, accessible and sustainable post COVID world.’ And I believe that really does summarise the work I do as a disabled person and a champion for disability rights, who campaigns to create a more accessible and inclusive world for everyone.

There is one quote by Margaret Mead, which I really liked and which I want to end on: ‘Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that ever has.’

Thank you for your time, Kush.