When Will the Government Listen to the Disabled Black, Asian and Ethnic Minority People Worst Hit by COVID?

It is almost two years since “freedom day” – 19 July 2021 – the day when lockdown restrictions finally lifted. For most people, the pandemic is now a terrible yet distant memory and life has returned to normal. But this is not the reality for many disabled people and their families – especially disabled people from black, Asian or ethnic minority backgrounds, and those with more complex needs. 

In fact, there is irrefutable and increasing evidence that the Government’s failure to consider people who bore the brunt of the Coronavirus has heaped further disadvantage onto those who were already most marginalised.

Earlier this year, Byline Times exclusively reported on the work of a national commission examining the impact of the pandemic, disablism and systemic racism. Now the commission – chaired by Disability Rights UK chief executive Kamran Mallick and led by the Voluntary Organisations Disability Group – has published a final report.

Its conclusion about the disproportionate impact on disabled people from black, Asian or ethnic minority backgrounds is that “systemic racism embedded in the Government’s responses to the pandemic may have worsened outcomes”.

For example, as the report states, the Government did not communicate properly with disabled people from these groups. Public health information was not tailored to meet the language needs of different groups, and people experienced discrimination and disruption when trying to get health and social care support.

In a modern, civilised, society it is unacceptable that people who were already the worst-off before and during a public health emergency have ended up further left behind once it is over – because of the Government. The sad truth is that, as the sibling of a disabled person, I find the latest evidence shocking but not surprising. 

My sister Raana, who has a learning disability, struggled to understand the Government messaging and ever-changing rules during the pandemic. Her anxiety soared when people with learning disabilities were not initially vaccinated – despite their greater risk of death from the virus. Raana remains very anxious about infection control and germs, still worries about the risks of socialising, and continues to carry a mask in case she needs it.

My family also knows people who continue to live cautiously to protect themselves or their relatives, and many others are still waiting for face-to-face support services or leisure activities to fully return. 

As Clenton Farquharson, one of the commissioners involved in the ableism and racism report, says: the “distressing reality” for disabled black, Asian, and ethnic minority people is that they shouldered an unjust burden through the pandemic. “The widespread injustice they face, fuelled by inaccessible public health information, persistent ableism, and a Government lacking genuine engagement, has intensified vulnerability and discrimination,” he added.

The latest findings bring into sharp relief the devastating facts we already knew, including how six out of 10 people who died of COVID were disabled.

Alongside the statistics, human stories reveal the lingering presence of the pandemic in people’s lives. 

Take, for example, the experience of Orla McKenna, who has limited verbal communication and lives in a care home in Ireland. 

McKenna contracted the virus four times, was recently hospitalised for viral pneumonia, and can no longer walk without help, partly because lockdown made her mobility issues worse. It is two years since “freedom day”, but McKenna’s day centre services are still only running for four days a week, instead of five.

McKenna’s sibling, Brenda Aaroy – a member of carers’ network Families Involved Northern Ireland – worries that many support services will never return. Aaroy shared the family’s experience in a UK-wide research project on the experiences of people during and after COVID. 

The research project – the ‘Coronavirus and People with Learning Disabilities’ study – recently concluded after two years of following almost 1,000 people with learning disabilities and 500 family carers. Some of its hardest-hitting data relates to people with profound and multiple disabilities.

It shows that, although the pandemic is over, this group faces permanent disadvantage.

One heart-breaking finding is that a significant number (32%) of family carers and support workers of people with profound and multiple learning disabilities say the person’s life will never return to normal (the figure is lower among among family carers or supporters of people without such complex needs, 19%). 

In light of this evidence, the COVID Inquiry must focus on disability and structural racism – particularly as minority groups face new challenges like the cost of living crisis and the social care support shortage.

There are also now clear – and achievable – actions for the Government.

At the very least, it must create a cross-departmental board of disabled black, Asian and ethnic minority people to advise on the impact of policy.  This is one of the main recommendations in the new report on ableism and racism. 

And it makes no sense that the Government and other public bodies do not produce accessible format information of different sorts and in different languages as standard. Not only should this be par for the course under equality legislation, but also there are excellent specialist, self-advocacy and disabled people’s organisations that have the skills to produce this material.

Two years since the final COVID restrictions lifted, it is imperative that the Government listens to and acts upon the experiences of the people and families who were at the sharpest end of the pandemic and who continue to struggle with its impact. Especially those at the intersection of race and disability.