Covid has not gone away. On June 21 covid-related restrictions may (or may not) be lifted, but we need to recognise that over the last 18 months some communities have been much more affected than others. – not least those with disabilities.
DISABILITY, RESISTANCE AND CAMPAIGNING DURING THE PANDEMIC:
An interview between disability campaigner, Tara Flood, and Jim Grealy from HAFSON
We know what an awful toll the Covid-19 pandemic has inflicted on our communities with about 150,000 deaths in the UK, up to a million people experiencing long-covid symptoms and a mental health emergency arising from the pandemic.
One group of our population has been disproportionately impacted by the pandemic – disabled people. The Health Foundation, reporting in February 2021, showed that disabled people accounted for 59% of Covid deaths (see https://www.health.org.uk/news-and-comment/blogs/the-forgotten-crisis-exploring-the-disproportionate-impact-of-the-pandemic). The effects of Covid on disabled people has only been intermittently tracked by media reporting.
HAFSON spoke with Tara Flood who, together with Kevin Caulfield, is a leading disability rights activist, about some of the issues which the pandemic has brought to the surface over the last 18 months. Tara and Kevin also work at the Council as the Strategic Lead for Co-Production which is a role they job-share.
H&F Council commissioned The Disabled People’s Commission, which reported in June 2018 and Tara, who chaired the Commission, prior to working at the Council, Kevin and other disability campaigners have been instrumental in driving the recommendations of this report forward.
We spoke with Tara in February 2021 and this is an edited version of our conversation.
Jim: Roughly how many disabled people are there in Hammersmith and Fulham?
Tara: That’s one of those questions that is almost impossible to answer and that’s because of the way that disability is defined, because there are national definitions that are linked to benefits, personal independence payments, universal credit, but there are also definitions linked to local authority home care commissioning. There is also the disability definition in The Equality Act. And there is also something, which is where I sit in all of this, self-definition.
If you are a disabled person that experiences barriers to equality, participation and rights because of society’s perceptions about the way you look or the way you speak or the way that you function, you can be defined as a disabled person. So, generally, both internationally and nationally, it is thought that of any population about 20% are likely to be disabled people.
Jim: Why do disabled groups get defined in different ways?
Tara: It suits the system doesn’t it, I think, to distinguish groups from each other because it limits a sense of solidarity. So people with mental health issues under the Equality Act are disabled people but you will rarely hear mental health system providers talk in those terms.
They always want to distinguish people with mental health – and it’s not just people with mental health issues, it’s other health issues and impairments – because it doesn’t want there to be a sense of unity between any particular groups in the population, particularly those groups that are most marginalised. They’d much rather distinguish us from each other. That is why the social model of disability is so important because it helps people who experience barriers identify as disabled people and places the responsibility of removing those barriers on society, with that comes a sense of solidarity. Disabled people can also include older people whose mobility has changed or who require some kind of community support but you will rarely hear agencies, working with older people, talk about their members as disabled people. It’s odd, and so often feels like a missed opportunity to unite together and address systemic discrimination and inequality.
Jim: Lots of 3rd sector groups, who do really good work – that’s quite important to acknowledge – depend on getting particular funding and that means that in practice the purse is too small so each must have a narrow definition to gain funds – that must make it hard at times to organise in a broader kind of front.
Tara: I think it is very difficult then, isn’t it, for residents who require some kind of support, whether it’s from the Council, from health or from the third sector, to try to get that support in anything like a holistic and rights-focused way. Funding and commissioning contracts tend to compartmentalise people rather than respond to us as human beings.
Human beings are complicated and that’s all right. We have a range of different requirements, different impairments and health conditions, and yet what we’re really looking for is a way for us to receive the support we need that responds to our individuality rather than splitting us up into different compartments. This idea of pigeon-holing people, and if you don’t fit into that particular pigeon-hole you either don’t receive the support you need or you are considered to be ineligible for a particular benefit or a particular activity. But either way it’s a way of marginalising and devaluing people.
Jim: Let me ask about money. One of the barriers that must come across for people who identify as disabled is that disabled people are seen by part of the media and perhaps by part of the general population just as people who ask for money rather than agents who participate just like anyone else in society.
Tara: So true. Traditionally the trope about disabled people is that we are passive recipients of services, of charity, of money. There is very little discourse about the role that disabled people play as agents of change, as disrupters, as campaigners, as leaders.
Jim: Many disabled people, like others, have spent a long time shielding. How have disabled people across the borough continued to organise during covid because I’m sure that people have not just passively kept their head down?
Tara: I think that that’s a really good question and I think it must be mixed. I have really good technology, I have really good online access, it’s easy for me to be active during this terrible time because I can participate in activism via zoom etc. But there are lots of disabled people who have become incredibly isolated despite a real increase in community action. With lockdown there has been a huge reliance on technology, but there are disabled people who have particular barriers around communication and information, and haven’t had the support to get involved in the surge of online activity.
All the evidence shows that it’s still the case that the vast majority of websites, for example, are not access compliant for various access software, so there are lots of sites, in fact the vast majority, that don’t have British Sign Language video alternatives, they don’t have formatting that allows for screen reading software. So there are still huge barriers. We shouldn’t assume that online access has made things easier for someone who is stuck at home and not able to get out. Because unless you’ve got accessible technology, unless you’ve got the broadband, your sense of isolation will be worse than it was. We need to do more to think about digital inclusion really means and how to remove existing barriers.
Isolation and loneliness have gone through the roof for lots of people here in the borough but also across the country.
Jim: Is there sometimes a gender or ethnic mix in the disability communities about what you can do in terms of organising? Are there distinctions that you’d notice?
Tara: I think what’s really interesting about the disability rights movement which Kevin and I have been a part of for a long long time now – there has been an increased understanding about the intersectional nature of discrimination, this idea that as a disabled, working class woman my experience of inequality is different from that of a middle class disabled white man. Discrimination and inequality are multi-layered and so are the solutions. I think what’s good about the movement is the conversation has changed. We have started to think much more about what can we say as activists about that experience, about how we can share this common experience about disability, about the social framework that says anyone with an impairment or health condition is less important, is less valuable than others. Experience is different if you add the layer of gender, if you add the layer of class etc. We’re much more aware of it now than we were in terms of what that looks like and more importantly about what the solutions might be.
Jim: Was much of the Disability Act disapplied in April last year?
Tara: The Equality Act which includes disability still exists, however. The Covid legislation, introduced by the Government last year, has removed particular and hugely important public duties from local authorities around provision of social care, around the provision of educational support, both of which have had and will continue to have a huge impact on disabled people, including disabled children and young people in education. Local authorities could now say ‘we are no longer providing social care’. It is only where it is considered to be a breach of the Human Rights Act that it could be challenged to be overturned. So just think about what that means.
You think about the thousands of disabled people, including older people and children, who receive local authority support to enable participation in the community or for children in school – all of that support being taken away. The impact would be enormous. And I think that’s why Kevin and I worked hard with colleagues at the Council to ensure that there would be no disapplication. Hammersmith and Fulham confirmed last year that anyone receiving community/home care support would continue to get that support. We are the only local authority in the country to make that commitment.
(It is worth contrasting the approach of H&F Council to how a number of other councils are treating disabled people – see, for example, https://www.theguardian.com/society/2021/apr/08/english-councils-huge-extra-care-bills-disabled-mentally-ill-adults )