Saba Salman reports on the yet-to-be-published findings of a national commission examining the impact of the pandemic, disablism and systemic racism
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New research will reveal fresh evidence of the pandemic’s disproportionate impact on disabled people from black and ethnic minority communities.
Byline Times has seen initial findings from the national Commission on COVID-19, Disablism, and Systemic Racism, which reflect the harmful effect of the Government’s neglect of social care and its confused approaches to navigating the Coronavirus.
The commission’s forthcoming report, to be published by the summer, incorporates six months of evidence-gathering among disabled people, families, carers and social care staff. The commission is led by Voluntary Organisations Disability Group and chaired by Disability Rights UK chief executive Kamran Mallick.
“The pandemic highlighted the inequality that already existed, and the decisions the Government made just made those worse,” Mallick said.
As this newspaper has reported previously, Government inaction or indecision included an initial failure to vaccinate learning disabled people, despite their greater risk of death from the virus; and support staff going without personal protective equipment.
The commission’s early findings are based on surveys and submissions from around 150 disabled people, family carers and care staff.
Analysis so far shows how reports of the disproportionate number of deaths among disabled people and those from black or ethnic backgrounds created anxiety. This fear was reinforced by a “survival of the fittest” narrative within the Government and messaging about COVID-19 affecting only the “vulnerable”.
There is also evidence that existing health and care inequalities were exacerbated.
For example, lockdown restrictions meant people lost social care support, with some health or care staff assuming that relatives would step in.
One care worker told the commission: “There have been a number of instances where people I work with have required healthcare and have had very poor outcomes, I believe this was not only due to their learning disability but also possibly due to their ethnicity.” The fact that the person’s carers were black or Asian compounded these issues, “with assumptions being made about their understanding of complex issues and I believe on occasions they were dismissed or not listened to due to this”.
The commission’s research also reflects the challenges created by a blanket approach to public health information, instead of accessible, ‘easy read’ guidance. For example, only a few people in a small sample survey of 24 got information on how to keep safe from official Government guidance. Almost half got this information via family.
Mallick’s own experiences were appalling. The campaigner, who uses a wheelchair after developing polio as a child in Pakistan, was not added to the priority list for vaccinations, despite the fact his reduced lung capacity and polio should have placed him on the ‘extremely vulnerable’ list.
“This oversight resulted in no access to additional support,” he told Byline Times. “I still had to go out and do my shopping. I wasn’t prioritised for vaccinations but had to wait for my turn based on the general criteria – age.”
Having fallen and broken his leg in lockdown, Mallick spent three hours on the floor of his London home awaiting an ambulance. Paramedics said his leg was not broken, despite his insistence, and told him to call 999 if it did not improve. Taken to A&E two days later, he spent five weeks in hospital because it was impossible to arrange social care at home.
“The equipment I would need was unavailable, including no access to a suitable wheelchair for over six months,” he said. “The wheelchair service refused to visit in the hospital or at home to assess me, and the hospital refused to let me take their ill-fitting wheelchair because that was not ‘practice’.”
In hospital, Mallick had a niggling sense he was being treated differently. “Once moved to the ward, I was largely left,” he recalled. “The only time someone came in was if they needed to do something or I called for them.” Yet a patient in the neighbouring room, a white English wheelchair-user, got lots of visits from various staff “just to say hello, good morning, and ‘how are you’ kind of conversations”. He added: “At the time, I thought I was just perhaps over-thinking it but, on reflection, it was real.”
Mallick was discharged with an inadequate wheelchair which he and his wife adapted to fit. As well as using pillows and rolled-up towels to support his back and leg, they used cardboard and gaffer tape to help make it fit, placing chopping boards under the seat. “Because I have a spinal fusion, I need to sit on a straight base, not one that sags,” he said. “It was an awful, horrible experience filled with pain and discomfort.”
For parent carers like Surajah Hunter, disabled people and their families were certainly “at the bottom of the barrel” during the pandemic.
Hunter, a paediatric nurse, told Byline Times that her autistic 24-year-old son grew increasingly anxious during the pandemic. As a healthcare professional from a minority background, she was also at greater risk of contracting COVID-19. A shocking 97% of Britain’s medical staff who died from the virus were from black, Asian and minority communities.
Hunter, a trustee of Leeds-based disability charity Inclusion North, said her son’s anxiety soared in lockdown. He was socially isolated and became fixated on the news. When he returned to his special college, the sudden shift to busy, crowded spaces triggered a mental health crisis. Her son was sectioned and placed in psychiatric care for several months. He is now back at home.
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As for COVID-19 guidance, Hunter, who eventually gave up her job to support her son, said that “information was not consistent” and that the Government “didn’t know how to handle it. It was very confusing and sometimes conflicting advice”.
Syed Ullah, who like Hunter is a member of Inclusion North and has an eight-year-old autistic son, agrees that the lack of information compounded the challenges.
“I relied mainly on mainstream media or local authority websites,” he said. “Other news, like from black or minority communities, was conflicted, mainly negative and based on conspiracy theories or rumours. I wasn’t aware of any easy-read information… ‘one size fit all’ didn’t help people with additional needs from our backgrounds.”
Rhidian Hughes, Voluntary Organisations Disability Group’s chief executive, told Byline Times that the commission’s work will show clearly how the Government’s response “left some groups behind” but will also highlight necessary action. “The inequalities people faced were not new, they were magnified by COVID-19, and the final report will be used to ensure intersectional inequalities are better understood and – crucially – acted upon,” she said.
The most obvious, and long overdue, action is to overhaul and provide proper funding for the social care system. But there is also a need for greater awareness of the additional challenges faced by this marginalised community before, during and since the pandemic.
“The Government sees us as a cost, never as an asset, of value and worth,” Kamran Mallick added. “We are not seen as an investment in our country. There is generally a negative narrative about disabled people aligned to care and support, not outcomes and inclusion.”
Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’ and the chair of the charity Sibs, which supports the siblings of disabled children and adults
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