“UK needs a National Disability Strategy, co-produced with disabled people” – Disability rights champion Kush Kanodia

In #InterviewOfTheWeek, we feature Kush Kanodia, a prominent disability rights campaigner from the United Kingdom. Kanodia made headlines for spearheading the #NoWheelChairTax campaign. He was also the torchbearer for the Paralympic Games in London 2012.

NewzHook: It’s now widely acknowledged that the Covid-19 pandemic has highlighted systemic inequalities, even in developed countries. Could you talk about the UK scenario, vis-à-vis the disabled community?

Kush Kanodia: The COVID-19 pandemic has shone a light on the long-standing structural inequalities and discrimination that disabled people experience in the UK. The dreadful disparities have been recently reaffirmed by the grim data released by the Office for National Statistics (ONS), which shows that disabled people make for about 60% of all COVID-19 related deaths in England and Wales. Disabled people make up only 17% of the population according to the ONS and considering there are now 120,000 COVID-19 related deaths, one can begin to contemplate the true scale.

The UK’s failure to protect disabled people, especially those with learning disabilities, is a national scandal. Learning Disability England said almost one-fifth of its members had reported Do Not Resuscitate (DNR) notices placed in people’s medical records without consultation. Another organisation Mencap has received reports from people with learning disabilities that they had been told they would not be resuscitated if they were taken ill with COVID-19. The Care Quality Commission said in December that inappropriate DNRs had caused potentially avoidable deaths.

Failure to protect

In 2020, a Public Health England report revealed that the death rate for people aged 18 to 34 years with learning disabilities was 30 times higher than the rate in the same age group without disabilities. One can only then wonder in amazement why the UK government has still failed to prioritise all people with a learning disability for a priority COVID-19 vaccination.

NH: In what aspects is this inequality most evident?

KK: Inclusion London’s second report based on research gathered in all three lockdowns describes how disabled people continue to experience hardship across all areas of life: increasing mental distress, social isolation and loneliness, food poverty, financial difficulties, workplace discrimination, problems accessing healthcare, and unequal access to medicine, vaccines, and social care. Despite the messages about protecting and supporting those in greatest need, the government’s approach has been to introduce guidance and policies that actively undermine our ability to protect ourselves and our rights to critical support.

Feelings of isolation persist

Rather than helping to safeguard disabled peoples’ rights, the Coronavirus Act 2020 was an unprecedented assault suspending critical protections under the Care Act and the Children and Families Act. The Act has, therefore “undermined and diminished the right to care for disabled people,” and this was even disgracefully voted in again at the six-monthly review in September 2020 despite over 150 organisations calling on the government to remove the powers in the Act, that are in direct breach of the UK’s obligations under the UN Convention on the Rights of Person with Disability.

The last 10 years of austerity and the government’s welfare reforms have led to “grave and systematic violations” of disabled peoples’ rights in the UK. These are not my words but that of the United Nations Committee on the Rights of Disabled Persons. These were the findings in 2015 when the UK became the first member state to be investigated for violations of disabled peoples’ human rights. Disability has become the strongest predictor of poverty in the UK. 54% of the population living in destitution are disabled.

NH: How is the disabled community coming together to battle these issues? Could you dwell on your recent successful campaign #NoWheelChairTax and its impact?

KK: We have some great charities in the UK that are led by disabled people from Inclusion London to Disability Rights UK. However, we do not have proportional representation in either the national or local governments. Of the 650 MPs in the House of Commons, the number of disabled MPs may have fallen to just five. This lack of lived experience and disabled leaders, is reflected not just in government but across all respective industries. That is part of the reason why disability inclusion has regressed so significantly in the UK.

From 1 January 2021 I did manage to abolish all disabled car parking charges from 206 National Health Service (NHS) hospitals in England, helping over 2.5 million disabled people with a Blue Badge in England to access critical healthcare during the pandemic and the national emergency lockdown.

The campaign was born on 4 July 2019 when Chelsea Westminster hospital decided to start charging for disabled parking. Within a week I was made an Ambassador for Disability Rights UK and leader of the new campaign.

None of the main British media organisations have published the success of the campaign, barring the Asian Voice. Perhaps this is reflective of the compounding aspects of discrimination of being a BAME (Black, Minority, Asian, Ethnic) disabled person in the UK?

The truth is I am probably the first citizen, let alone the first BAME disabled person to have transformed the largest health system in the world. The NHS employs over 1.7 million staff and is the fifth biggest employer in the world. This journey shows that disabled citizens can achieve unprecedented feats, which even non-disabled citizens have previously achieved.

I was honoured to be selected as the second most powerful and influential disabled person in the UK with the Shaw Trust Disability Power 100 in 2019. Since then, I have been a judge to help empower the generation of disability rights leaders. I was also a torchbearer for the 2012 Paralympic Games in London where the motto was to ‘Inspire a Generation’. That is exactly what I have dedicated my life in service to achieve.

Key priorities ahead

NH: The UK government will release the National Disability Strategy later this year. What do you believe are the key priority areas?

KK: I will highlight some of the other key priorities that I have been working on and also what the UK government should be focusing on for the National Disability Strategy.

I am currently leading the second part of the #NoWheelChairTax campaign to create a standardised and compassion disabled parking policy for London. The plan is to replicate this across all councils in England and the UK.

This was implemented in September 2020 by the Royal Borough of Kensington and Chelsea with free disabled parking extended from one to four hours. Matching the statutory waiting time target for A&E and enabling street access to three leading NHS hospitals in England – Chelsea Westminster, Royal Brompton, and Royal Marsden NHS hospitals. Access to critical goods and services is going to be essential for disabled peoples’ quality of life.

We have another battle approaching with the expansion of the Ultra-Low Emission Zone in London in October 2021. They have so far failed to make the same reasonable adjustments for disabled people as are currently made with the Congestion Charging Zone.

A comprehensive digital inclusion policy in the UK. I previously requested the government’s cabinet office to provide free fibre broadband for older and disabled people on means tested benefits. Unfortunately, the government has so far failed to take this policy recommendation forward for consideration.

We urgently need a national disability strategy, co-produced with disabled people that incorporates the UNCRPD into British law. This means eliminating disability discrimination, enabling disabled people to live independently, an inclusive education system and ensuring disabled people are protected from all forms of exploitation and enjoy the right to health and social care. Incorporating the CRPD into domestic law will ensure that people can take legal action when rights are breached.

However disabled peoples’ organisations are not too optimistic with this government’s performance. Recently, nearly 100 disability organisations and allies have called on the government to scrap its inaccessible national survey of disabled people.

We urgently need a comprehensive national social care strategy and for local government to make appropriate reasonable adjustments and to stop implementing unlawful pandemic recovery plans, as was recently ruled by the high court.

The UK government has an ambition for an extra million disabled people into work by 2027. Unfortunately, at this rate they risk going in the opposite direction within the next year.

You can read Inclusion London’s report on the lockdowns here