Too often forgotten: how do we create a country that values disabled people and closes the inequality gap we face?
In early March this year, when the government looked like an outlier in appearing to pursue a strategy centering on herd immunity, for the first time in my life I felt raw, hot fear. When the cases and deaths began to rise and it was clear the UK was closer to Italy’s trajectory than Germany’s, I couldn’t really focus on how the Coronavirus Act 2020 and related policymaking would play out for disabled people like me in the UK. I had to turn my analytical brain off from my academic work on disability law and policy. Thinking of my toddler and what might happen if I caught coronavirus and was treated under the NICE Guidelines ‘frailty’ score was too much. I sobbed deeply. After ten years of austerity, I knew that disabled people would pay an enormous price and it turns out this pain has a name: anticipatory grief.
So in those early days, I had to turn to the small sphere of influence where I could do something practical, something that might help at a hyper-local level. I threw myself into the other part of my work life, as an Oxford City Councillor. It is this experience, alongside work with academic colleagues on our submission on disability to the Women and Equalities Commission Inquiry, which has shaped my perspective on what we need to do to deliver a fairer country for disabled people post-coronavirus.
The unequal impact of the Coronavirus Act 2020
Sadly the government’s response to the pandemic suggests little has been learned from the multiple concerns that the United Nations raised in 2017 about the United Kingdom’s treatment of disabled people during a decade of austerity.
In fact there has been a blatant disregard of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which we ratified in 2009, and the government’s Public Sector Equality Duty under Section 149 of the Equality Act 2010.
The Coronavirus Act 2020 and the policymaking in response to the pandemic have led to far-reaching changes to the law affecting every aspect of disabled people’s lives. These include reducing the number of professionals needed to make a hospital order under the 1983 Mental Health Act and ‘easing’ the requirements on local authorities to provide care for disabled people under the Care Act 2014. Young people with disabilities are facing further barriers to their education as a result of remote learning and assessment measures during the nation’s lockdown.
As evidence grows of the government’s devaluation of our lives and discrimination against our living them decently, they have been careless too in trying to accurately record our deaths. The anxiety disabled people have felt during the pandemic has skyrocketed. In the middle of a health crisis, disabled people should be in no doubt about their right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. However, evidence is emerging on the inconsistency with World Health Organisation standards of the government's guidance on combating coronavirus in care.
With broad brush strokes the government is eroding our rights by permitting ‘easing’ of public sector duties and, rather than utilising local government as a buffer against increased inequality, the government has allowed local authorities to pursue only ‘reasonable endeavours’ to fulfil existing obligations. Concerns about the government’s focus on a narrower ‘shielded population’ have seen them face one of the largest class actions in history for being discriminatory to disabled people, as many were left off their vulnerable list and went without food due to the strict criteria of the government’s food delivery scheme. In every area, there has been insufficient incorporation and uneven implementation of the UNCRPD by the government in response to the crisis. It means disabled people are paying the very heaviest price on our liberty, dignity and quality of life.
Representation matters
This tumultuous context creates an imperative to look forward and to develop a vision for disability rights for the next generation. Central to this is shaking off the medical model of disability – which conceives disability as derogation from the norm – and properly enshrining the human rights model of disability in law. This model focuses on the inherent dignity and inestimable value of each human being and places the individual centre stage ‘in all decisions affecting him/her and, most importantly, locates the main “problem” outside the person and in society’.
The government must undertake an immediate review of the Coronavirus Act 2020 and all policymaking in response to the crisis to comply with its duties under the Equality Act 2010 and commitments to the UNCRPD. It must then legislate to make the Convention directly enforceable in UK law and begin a process to harmonise with pre-existing legislation. The Convention already contains a powerful and detailed set of tools to help us effect change. It ought to be utilised across every ministerial department and tier of government. Resource should be placed with the Equality and Human Rights Commission to monitor and facilitate implementation. Disabled people are already mobilising and a campaign around this legislative change – the likes of which we have seen before – could be transformative.
Key to making this paradigm shift to ‘achieve the win’ is changing the law so that a sufficient number of disabled people sit at the democratic decision-making table. Whilst one in five people have a disability, 2017 research showed only 1% of Members of Parliament identify as being disabled. ‘Nothing about us without us’ is a central tenet of the Disability Rights Movement. For this tenet to become a reality of our Parliamentary democracy, positive action is required to elect the 117 MPs – that’s 18% of 650 Members of Parliament – needed to adequately reflect the proportion of the working age population with a disability. As I have written elsewhere, to do this requires amendment to Section 104 of the Equality Act 2010 on selection of candidates to allow for All Disability Shortlists, along with changes to the funding available for candidates.
The ability for the government to forget us during this crisis has been facilitated by our lack of representation in the House of Commons. Our sense we have been forgotten has been aided by the absence of any reference to us and our needs in official government briefings, themselves entirely inaccessible to many disabled people. Our invisibility de-values us. This feeling of erasure would be partially countered if broadcasters doubled-down on doubling the number of disabled people working in UK broadcasting during the crisis.
Councils are key
Next, local authorities of all tiers must be treated as being at the forefront of building a fairer country and bridging the gap between the immediate responses to coronavirus and tackling inequality post-coronavirus. As Cabinet Member for Supporting Local Communities in Oxford City Council, I worked closely with officers, other councillor colleagues and voluntary organisation the Oxford Hub to establish five Locality Response Hubs across the City. Doing nothing was not an option for us. Our strategy is based on meeting the needs of vulnerable people across Oxford and re-purposing the Council’s community service infrastructure to work with voluntary organisations, the Oxford Hub, and statutory agencies across the city to support vulnerable people most effectively.
Many local authorities are working extremely hard on the front line to curb the impact of coronavirus on their residents. Some, however, are also facing bankruptcy because the current financial challenge is so great. The public health crisis our country now faces requires more localised responses and organisation. The trail of inequality that the pandemic will leave in its wake will need to be tackled on the hyper-local level, with place-based solutions developed by local authorities in partnership with their citizens. For disabled people, receiving well-coordinated and resourced support from local authorities will be crucial in closing the inequality gap going forward. The government needs to go beyond its current financial commitment and seize this opportunity to enable local government innovation and world-class delivery of public services on people’s doorsteps.
No more so is this the case than in the role local government could have in ensuring decent housing becomes inextricably linked to the health and wellbeing of the nation over the coming decades. The coronavirus pandemic has not been a great leveller. As Rachael Orr lays out in her essay, people’s ability safely to self-isolate from infected family members and to manage the enormous strain on our mental health has depended upon whether they have sufficient bedrooms, space for children to complete schoolwork and access to gardens or outside spaces. For many disabled people, for whom it was too risky to have agency workers without adequate PPE or whose carers were unable to work, it is also about having sufficiently accessible homes that enable them to live as independently as possible with the support of family and friends.
The scandal of the deaths in care homes raises further questions about de-institutionalisation and high quality community living. For too long, adult social care, National Health Service provision and responding to the housing crisis have been seen as separate state responses to inequality. The apparent intractability of how to fund decent adult social care is in part because these things are seen to be discrete entities. We must use the pandemic to see them as inextricably linked. In doing so, we need to learn the lessons of the stark inequality of this public health crisis – so reliant on our housing to contain it – from the people who have lived it. Last year, Oxford saw the hugely successful Citizens’ Assembly on Climate Change, the first in the UK. If the government adopted this model and worked with local authorities to establish Citizen’s Assemblies on Homes for the Health of the Nation across the country, this could facilitate this shift. Crucially, disabled people from every type of living accommodation and institution must be represented in such a model to share their experiences and vision for change.
Thirteen million people in the UK have a disability. Yet this important demographic is largely excluded from the curriculum at every level of education and is underrepresented in our academic institutions and children with special educational needs and disabilities face attainment gaps at every key stage. Consequently, disabled people face significant barriers in obtaining and maintaining employment, as well as a substantial national pay gap. Never has teaching and research on disability been more important in every level of education.
Taught courses on disability enable ‘consciousness-raising’ for all students; providing them with the tools they need to think critically about the application of their subject of study to issues affecting disabled people. Inclusive pedagogical approaches make it more likely disabled people gain the skills they need to flourish in employment. Increased awareness of issues affecting disabled people across employment sectors, and the greater inclusion of disabled people across workplaces, could facilitate higher employment rates for disabled people, as well as the development of goods and services which better meet our needs.
The two parts of my work life have taught me that inclusive education and an inclusive economy are mutually reinforcing. The coronavirus pandemic has placed our economy in a perilous position. A decade of austerity has shown that disabled people are most at risk of shouldering this burden. Alongside the urgent re-think of Universal Credit that is needed, we need a recovery strategy for an inclusive economy. This strategy must connect the representation of disabled people in the national curriculum with inclusive training and a recruitment drive for disabled people to be part of place-based economic solutions at a local level.
Democracy is an order of social equality and non-discrimination. We must seize this moment to take decisive action to close the inequality gap disabled people face and help create a country that values us. Our democracy requires it.