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Coronavirus lockdown has stranded normally independent disabled women at home, with nearly two thirds struggling to get basic necessities from the shops and more than half finding it hard to cope with isolation.
One teacher and PhD student, who has cerebral palsy and uses a wheelchair, told HuffPost UK she hadn’t left the house for 14 weeks – having faced a “dystopian nightmare” of panic buying and careless shoppers the last time she went out. She, like many, has struggled to get online delivery slots.
It is just one example of the disproportionate impact of the pandemic on disabled women laid bare by new research. Some six in 10 disabled women (63%) are struggling to access basic necessities from the shops compared with 46% of non-disabled men and 52% of non-disabled women, the study shows.
Disabled women are also under significant financial pressure with a third (34%) saying their household had almost run out of money compared to a fifth of non-disabled women (24%) and men (23%), according to the research.
And more than a third (38%) of disabled mothers said they were struggling to feed their children.
The analysis from Women’s Budget Group, Fawcett Society, Queen Mary University of London, and London School of Economics shows social isolation has hit disabled women the hardest, with 56% finding it difficult to cope.
A quarter of disabled women (26%) revealed they had not left the home at all in the last week, compared to 17% of all respondents.
Susan Watson, 46, has cerebral palsy – a lifelong condition that affects movement and coordination. She told HuffPost UK she hadn’t left home for 14 weeks during lockdown.
She has gone from being an “independent, robust and autonomous” individual to being reliant on others, particularly her husband.
“I am normally completely independent and autonomous and would drive, teach and be studying for my PhD,” she said.
“But I have changed from all that to being completely locked down. Until the last 10 days, I hadn’t even left home for 14 weeks as I have been shielding.
“After being so independent, I now feel completely reliant on others and ultimately my husband due to the coronavirus pandemic and lockdown.”
“I feel very much as though even the most mundane tasks such as going to the supermarket, meeting a friend for coffee or going to work are beyond me. I feel this situation is never going to end.
“After being so independent, I now feel completely reliant on others – and ultimately my husband – due to the coronavirus pandemic and lockdown.”
Susan, who lives in York and is married to Tom Wright with three children, says she has been affected in multiple ways by the coronavirus crisis and has had an unsettling and disjointed experience.
She was born with cerebral palsy, which affects her limbs and lower body. She uses a manual wheelchair and, before the coronavirus crisis, enjoyed a full life teaching at the University of York and studying for a PhD.
When the pandemic hit, her life changed drastically and she found herself juggling numerous challenges on top of her disability.
Although Susan was not on the initial list of vulnerable people instructed to shield by the government, she and her family made a decision in mid-March that she should lock down and stay at home to protect her health.
“We decided as a family that I needed to lock down and withdraw from everyday life,” she said. “We made this decision as it felt like the right thing to do to protect me against the virus.”
Around the start of the coronavirus pandemic, when there was discussion about who might or might not be given a ventilator if they became infected with the virus, Susan was upset when people with cerebral palsy were listed as among those who would not receive treatment.
“It was really frightening,” she remembered. “It was also a manifestation of what you felt deep down about how society viewed you. I felt I had to somehow prove my worth.
“It was a very emotional and difficult time.”
On one of her last trips out of the house before she locked herself down to shield, Susan went to the supermarket to do an ordinary shop – and was horrified by the way she was treated by people panic-buying food.
“People were pushing my wheelchair out of the way so they could grab food that they were panic-buying,” she said. “It was a horrible experience. I am a robust person but I felt like I was in a dystopian nightmare.”
Susan had major issues trying to organise online shopping as she wasn’t officially on the list of people needing assistance due to shielding. Her husband was reluctant to go out shopping as he didn’t want to risk bringing the infection into the home.
“People were pushing my wheelchair out of the way so they could grab food that they were panic-buying. It was a horrible experience.”
Then in mid-April, Susan received a letter out of the blue from NHS England telling her that they had now decided she was on the list of people who needed to shield by staying at home – even though nothing had changed. This made her feel justified in deciding to shield herself from the start of the crisis.
Susan’s husband is a key worker and although he is working from home, she says he is on long hours and can’t take time off.
As a result, homeschooling her three children and cooking meals every day for the five of them is predominantly falling on her – on top of the challenges of her disability.
“My children are 14, 12 and seven and none of them fall into the age range to return to school,” she said. “There is a lot of emotional labour associated with schooling and childcare and trying to remember everything.
“The social isolation has been very difficult and the only people I see are my husband and children.
“I feel like I am completely cut off and the government still hasn’t given any information on when people who are shielding can stop. It feels like this situation has been going on for so long with no end in sight.
“The virus has brought to the fore how society views disabled people – that our lives are less valuable, and somehow we are more expendable.
“It has been very hard to have to explain this to my family, and especially my children.”
The organisations that carried out the study say it paints a bleak picture. They are calling on the government to alleviate the pressures.
Bethany Young from disabled women’s collective Sisters of Frida said there are significant barriers facing disabled women as a result of the response to the coronavirus crisis.
“Intersectional experiences need to be seen and valued,” she said. “Visibility and policy change is essential. Without it, we will struggle against even deeper social inequality long after the lockdown ends.”
Sam Smethers, chief executive of the Fawcett Society, said: “Disabled women’s experiences have been hidden from view until now.
“Yet the levels of disadvantage and pressure they face are immense and among the highest we have seen.”
Sophie Harman, professor of international politics at Queen Mary University of London, fears there may be further hardship ahead for people with disabilities with the easing of lockdown.
“The survey results paint a very bleak picture for people with disabilities,” she said. “But my fear is the worst is yet to come with the easing of restrictions.
“From specific issues such as face coverings and who can wear them with the impossibility of lip reading, to wider isolation, to sector cuts and restricted access to services – there needs to be an urgent need to account for and include people with disabilities in all decisions over lockdown easing.”