The pandemic has seen a “deliberate marginalisation” of disabled people by a UK government that has shown them “active contempt”, a leading disabled artist-activist has told a festival.
Jess Thom told the disabled-led Neurostages arts festival in Glasgow that many of disabled people’s “hard-won gains” were under threat because the pandemic, and the political response to it in the UK, had further intensified the barriers they faced.
She said that any discussion about disabled people during the pandemic had been dominated by “paternalistic” ideas of protection, with little thought to the leadership they could provide.
She said later that this included the failure of supermarkets to talk to disabled people’s organisations and respond to the needs of disabled people, and the government’s failure to address the needs and concerns of users of direct payments, in the early months of the pandemic.
Thom (pictured), co-founder of Touretteshero, told the festival that this had been a “wasted opportunity” to learn from disabled people and their “abundance of knowledge, skills and expertise” as the country adapted to the long-term repercussions of the pandemic.
In response to a question from Disability News Service at the end of her keynote presentation, she said she had seen many examples of the government’s “active contempt” for disabled people during the pandemic.
She pointed to its refusal to have an on-stage British Sign Language interpreter for televised pandemic briefings; the failure to engage with disabled people’s organisations on social care; and the “continued leaning” on the views of non-disabled professionals rather than “disabled people who have professional and lived expertise and could be shaping a better future”.
She said she believed the government had no interest in learning from the knowledge of disabled people.
She added: “I feel like my belief in that has only got stronger throughout the pandemic because as a disabled person I could see that my experiences and those of my community were missing from pretty much every piece of policy.”
She said that much of this was “more than just a lack of thought, it was a deliberate writing out of people from our society and a deliberate marginalisation”.
And she said she had not seen anything that would make her “feel confident that the current government mean anything but harm to our communities”.
Thom also told the audience – who applauded her answer – that she believed art had the potential to draw attention to the invisibility of disabled people in policy in “bold, brave, unignorable ways”.
In her presentation, she had spoken of how disabled people were continually seen as problems, as a “risk”, and as a threat to non-disabled people.
But while many disabled artists and allies had previously been gradually “chipping away” at this idea, much of the progress that was being made had been “slipping away” over the last 18 months, she said.
She told the festival: “It is essential that we are alert to this and don’t allow risk to be used as an excuse to cut access.”
She said that the “extremely narrow” way COVID-related risk was assessed during the pandemic saw other factors being ignored, and led to millions of people being put in vulnerable situations.
Thom wrote last year of how this included blind and partially-sighted people who were not offered shielding support “even though shopping or other tasks would be more likely to be reliant on touch or close support”, disabled people like her who needed “close physical support to undertake everyday tasks and can’t socially distance in the same way as a non-disabled person as a result”, and those who were living in overcrowded housing.
She also highlighted how access measures were removed during the early months of the pandemic, such as the provision of assistance to disabled passengers at rail stations.
She told the audience: “I want us to learn from this and develop a comprehensive approach that values the experiences and knowledge of disabled people.
“We must be trusted partners in the process of calculating risk and evaluating the benefits.”
The two-day hybrid festival was held online and at Glasgow’s Centre for Contemporary Arts.
It was curated by the Scottish Neurodiverse Performance Network (SNPN) and delivered by National Theatre of Scotland and SNPN, as part of the Limitless project to engage autistic people in creative activity as artists, audiences and participants.
A note from the editor:
Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations.
Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009.
Thank you for anything you can do to support the work of DNS…