Disabled women were made to feel abandoned, unworthy and disposable by the government’s failure to take their lives into consideration when making decisions and drawing up national policies during the pandemic, according to a new report.
The report found that the lack of support provided to disabled women by the NHS and the social care and social security systems during the COVID-19 crisis exacerbated the impact of the cuts to services they had faced over the previous decade.
Disabled women’s cost of living rose during the pandemic, while their income fell, with many being forced to take unpaid leave or cut back on working hours, while others lost their jobs, said the report.
They were also forced to become more reliant on partners, family members and friends for financial support and care needs.
Because of their low income, some could not afford the internet access they needed to shop online, while others could not meet the high delivery costs and so had to rely on deliveries from friends, community volunteer schemes or food banks.
The report, Disabled Women’s Perspectives on Independent Living During the Pandemic, was published by the disabled women’s collective Sisters of Frida.
MSunnia, who wrote the report, told an online launch event: “The picture is bleak because there is an overall systemic breakdown across society on pretty much all aspects relating to supporting disabled women, from social care to pay in the workplace.
“This is a structural issue, and it is about policy, it is about local authorities, the NHS, education and other providers simply not delivering equitable services for disabled women.”
MSunnia said there had been a “stark lack of thought for disabled people”, who “simply don’t live in a culture where marginalised people are valued”, and that the pandemic had “exacerbated all the ways that intersectional ableism exists”.
Disabled activist Dennis Queen told the report’s launch event: “Seeing the report was very frustrating because it reflected the individual stories that we’ve been hearing and it’s really important that these are studied further.”
She spoke of the “avoidable carnage” caused by the pandemic, which had reinforced disabled people’s call for independent living, and she said that disabled activists would take to the streets with their “free our people” message when it was safe to do so.
And she called on the government to produce statistics to show how many disabled people from intersectional communities had died from COVID-19.
Tumu Johnson, a member of the Sisters of Frida steering group, said it had been painful to read how disabled women had been left feeling that “their lives are unworthy and disposable”, which she said had been a theme of the pandemic.
The report describes how one disabled woman who was shielding was forced to use all her disability benefits to pay for taxis to get to hospital, because her appointments were moved to locations more than 30 miles from her home, which left her with no money to pay for food.
The report says that many disabled women found that their personal assistance needs were not met, while the lack of flexibility from local authorities meant they were not allowed to change how they spent their direct payments, for example on accessible technology that might have helped them during the pandemic.
They also faced delayed medical appointments, cancelled treatment and misinformation about the provision of personal protective equipment and their right to social care.
One disabled woman was unable to access the healthcare treatments she needed to alleviate her ill-health, while her caring responsibilities increased.
She says in the report that being a disabled parent in the pandemic had “decreased our quality of life completely, for me quite a lot physically in terms of I’m in a lot more pain, a lot more fatigue therefore my inability to be able to interact with my children, I am basically keeping them alive and that is all I can do at moment”.
She adds: “I’ve had to go back on anti-depressants and I’ve been off them for four years.
“It just got to a point where I thought no, I can’t carry on any more.”
Another disabled woman describes in the report how her care package was stopped by her local council, which told her she was not as much of a priority as other disabled people.
She said the council “conveniently forgot about me on many occasions”.
The report says that disabled women’s mental health “deteriorated sharply” during the pandemic.
Some of those who took part in the research “felt like a burden to their families or partners, while others reported that they were made to feel like a burden by health and social care providers”, while those who were told to shield said the lack of public health guidance “influenced the deterioration of their mental health”.
The report adds: “More broadly, our participants felt that there was a stark lack of consideration for Disabled people’s lives in terms of national policy and decision making.
“This led to feelings of insecurity, fear, abandonment and Disabled women were made to feel that their lives were unworthy and disposable.”
The report says that single and queer disabled women felt particularly “abandoned” by the systems that were supposed to protect them, while those who were shielding felt “locked in, isolated and unsupported by healthcare professionals”.
Many also felt dismayed by the “violent disregard” for their accessibility needs, including those who use mobility scooters and were unable to use them because pavements and paths were blocked.
Among the report’s recommendations is a call for the government’s public health messaging to be “clear, consistent and widespread”, while the report says it is “imperative” that the government holds an inquiry into the deaths of disabled people during the pandemic.
The report also backs legal actions being taken by Deaf and disabled people around accessibility and independent living during the pandemic, such as those taken in response to government failings on British Sign Language interpretation at televised briefings, and the failures of supermarkets to make their services accessible.
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