8. Submissions on Behalf of Disabled People’s Organisations by Mr Friedman KC

Mr Friedman: Not at all.

My Lady, I act for the Disabled Peoples’ Organisations, or the DPO, run by and for disabled people. They are Disabled Rights UK, Inclusion Scotland, Disability Wales and Disability Action Northern Ireland.

Disabled people died more of Covid-19 than anyone else. Disabled people suffered physical and mental harm during the lockdowns in ways that others did not. People who took years to set up and maintain systems of independent living lost those systems overnight. They lived with the fear of non-resuscitation, lesser prioritisation of treatment, or dying in their homes because no one knew they were ill.

The questions our clients bring to this Inquiry are: why did disabled people fare so badly during the pandemic, and what does it tell us about the society we have chosen to live in and could choose to change?

Disabled people are 20% of the UK population and six out of ten of the Covid dead. That should make their fate one of the most significant of public issues, but it is not. The DPO therefore suggests an essential starting point for the Inquiry, that the bulk of disabled people’s fatal and damaging outcomes during the pandemic were chosen. They were the product of the way our society is organised, and the dominant values and beliefs that guide it. Our clients use the terminology of disabled people because people are disabled by the fact that social spaces, services and provisions are modelled around certain kinds of bodies and minds to the disadvantage of others.

That does not deny the reality of individual impairments, but what disables people, because of their conditions, are barriers and attitudes that are not experienced by those without such conditions.

The predicament of disabled people overlaps with having lower income and rates of employment, inappropriate housing, and suffering food scarcity, isolation and hate crime. Disabled people are often treated worse because of their age, race, sex and gender. Inequality is now a core issue in this Inquiry, but during the pandemic these matters were initially not spoken of, or characterised with euphemisms such as “disparities” or “non-clinical vulnerability”; anything other than the made inequalities and inequities that they are.

One of the reasons for euphemism was to defend the indefensible. Austerity had particularly severe consequences for disabled people. It is perverse for its architects to suggest otherwise. There is an inescapable tension between, on the one hand, government’s withdrawing services in the ten-year period before Covid – a period when life expectancy ceased to improve for the first time since the beginning of the 20th century in this country – and, on the other hand, the central reliance on resilience within UK Government emergency doctrine.

The foundation of the choices that rendered disabled people particularly vulnerable during the height of the pandemic is a dominant ideal of personhood in our society. That person is autonomous, independent and self-sufficient.

Nothing signifies the notion of personhood more than the central place of the home in the government’s pandemic response. The person the government imagined when it told us all to stay at home was someone who could financially, physically and logistically afford to stay there. It did not imagine the person who had no spare room to isolate in, the person dependent on assistance from others, the person who could not stay at home or isolate within it because they need to care for someone else or because they could not survive without going out to work. Instead, it imagined a non-disabled, autonomous person who would regard their home as a place of safety and be capable of moving their life into it.

There is a different way to see all of this. It arises from the truth, that we are all vulnerable, we are all in a state of dependency at the beginning of our lives and are likely to be at the end of it. In between we will all, in some way, at some point, be affected by physical ailment, emotional suffering, or some kind of bodily limitation. In that respect, vulnerability is universal.

The opposite of vulnerability is not invulnerability, but resilience. Resilience is acquired over time by virtue of resources and relationships which the state is critical in either fostering or denying, depending on its policies. Laws against discrimination that secure a level playing field are good in themselves but not enough to produce a fair and resilient society, one that can offer protection to us all in a pandemic.

What is required is a more positive conception of rights and responsibilities that deals with differences of power and situation in a more responsive, imaginative and resourced fashion.

My Lady, the inequities suffered by disabled people should be understood as issues of public health, but they are also human rights violations. The UK has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities. What that global convention confirms is that disaster planning, data collection and co-production and co-design on policy are not just good ideas, they are binding international law. These rights were endorsed by the WHO’s 2011 report on disability, and in the 2015 Sendai Framework for disaster risk reduction.

Also, as my Lady knows, in 2017 the UK was criticised for its non-compliance with the UN Convention, with identified shortcomings in emergency planning, data collection and failure of consultation.

Having considered tens of thousands of previously confidential documents now disclosed by the Inquiry, what is extraordinary is how little these rights reports and guidance documents featured in government approaches at the outset and during the pandemic. These are some of the most important documents in the history of disability rights. On present disclosure, they left no footprint in the UK Government decision-making during the pandemic at all.

Against this background, the DPO identify nine failures in the Covid emergency state.

First, there was no system of disaster management because the UK does not have one. That much is clear from the evidence in Module 1. What we have scattered across legislation, regulations, guidance and plans does not cater for the critical collaboration between state and society that the Covid response demanded. Crucial links between central and local government are missing. Reliance is placed on the voluntary sector and community to fill gaps but without mandating that they be involved in planning or be funded to respond. Before 2020, none of the DPO were invited to engage on planning for a pandemic. They still have not been invited.

Second, with no plan beforehand, disabled people’s situation was then made worse by no plan being created. We now know that there was no high-level ministerial meeting on the impact of Covid on disabled people until 21 May 2020. On that day, the general public sector ministerial implementation group dealt with an agenda item on disability for the first time. The effect of that meeting was a plan to get a plan.

During the autumn of 2020 the government focused on the disproportionate impact of Covid on ethnic minority communities. Our complaint is not about that. Focus on all disproportionately impacted groups should have been prioritised. However, the Covid taskforce noted a direction from Mr Johnson and Mr Gove as late as November 2020 that planning for disabled people was to go on a “slower time”. That was despite knowing by June 2020 that disabled people were dying in disproportionate numbers, and despite Michael Gove in October 2020 declaring that, “time is running out” for the risks to disabled people, amongst others, to be mitigated in the second wave.

As a result, there was no plan for disabled people throughout the first and second waves of the pandemic, and there is still no plan.

Third, when it comes to equality matters including with regard to disabled people, the machinery of government is minimal. Roles are dispersed across several departments and dual ministerial posts with no overall lead minister. The Cabinet Office Equality Hub is described as a creature of policy and not an operational department. Yet the Minister for Disabled People, Justin Tomlinson, will suggest that he deferred to its Disability Unit, or DU, on the most essential features of his role.

During the pandemic, aside from the abject failure to escalate disability issues to ministerial meetings for months, other shortcomings include Minister Badenoch, whose portfolio did not include disability, being commissioned in June 2020 to conduct a review of disparities in pandemic impacts that did not examine the impacts on disabled people.

Fourth, none of the key decision-making during the pandemic was informed by the expertise of disabled people. Of the many problems with the slogan “follow the science” was that SAGE was initially dominated by medical scientists. Those who gave or acted upon SAGE’s advice did not benefit from the expertise of service providers or end users, including disabled people, and for a very long time no one appears to have noticed the problem. When it was noticed, the corrective action focused on race, ethnicity and gender. The perspective of disabled people remained missing.

Fifth, one of the consequences of no expertise is that there was no proper recognition of how disabled people fitted into the pandemic response. Most significantly, the administrative and political decision-making moved only incrementally from a clinical shielding focus to a broader social focus. Even then, disabled people remained subsumed within the notion of vulnerability, locating their risk within them as individuals as opposed to acknowledging inequality as its source.

Sixth, despite obvious risks to disabled people from the outset, the government did not properly engage with them or their organisations during the pandemic response. The encounters between Minister Tomlinson, DPOs and other organisations were qualitatively too little, too late, and too one-sided to constitute compliance with the principles of co-production and co-design. The Inquiry has evidence from multiple DPO and other civil society groups whose insights and networks could have been harnessed in the crisis but were not.

Seventh, government needed to engage properly with disabled people because they began the pandemic bereft of sufficient data about them. The papers issued by the DU on 21 May and 30 October 2020 registered an increasing awareness of the problem.

As of 12 November 2020 the DU proposed a data commission to understand factors driving increased mortality risk, but that proposal was not acted upon.

On 30 March 2021 the DU still expressed concern about data deficiency and the need for a data improvement programme.

In July 2021 the DU published the national disability strategy that committed to “strengthen the data and evidence base to support policies that will transform outcomes for disabled people”, but did not say how it would do that and still has not done so.

Eighth, failing to engage early with disabled people and their organisations was a lost opportunity to afford some of the most significant protections. The DPO repeatedly emphasised that they could have assisted earlier to prevent disabled people confined to their homes being left without food. Other grave errors were made regarding care homes, the risk of Covid to people with learning disabilities, assumptions around digital and other information access, making services only available to those on official medical lists, sign language, and earlier identification of long Covid, all of which it is difficult to imagine would have been overlooked with better engagement.

Ninth, and finally, government policy did not involve any significant income distribution to disabled people. The financial provision for disabled people during the pandemic was extraordinarily limited. For those who did not work or could not work, furlough meant nothing. Those on carers’ allowance did not receive the extra £20 of Universal Credit, neither did those on legacy benefits. In its briefing to the Covid-O group on 30 October 2020, the Disability Unit acknowledged the disproportionate financial impact of Covid on disabled people but proposed no remedy, save a possible financial package which did not come.

My Lady, that is why we say what happened to disabled people during Covid was a choice. This country could make different choices. It could comply with international law and have us live under more responsive government, but to do that there needs to be a fundamental investment in collective resilience. What happens to disabled people during disasters provides an insight in what could happen to all of us.

The pandemic has made everyone more aware of the life cycle, the limitations of the body and value of relationships. It has dispelled the illusion that we are islands unto ourselves. It has made the ethics of mutual care far more pertinent in the way we might live. One task of this Inquiry should be to embed those ethics into its recommendations for the future.

Thank you, my Lady.

Lady Hallett: Thank you very much indeed, Mr Friedman.

Right, Mr Cohen, last but not least.