6. Submission by Mr Friedman, KC

Mr Friedman: Good afternoon, my Lady.

Myself, Anita Davies and Shamik Dutta of Bhatt Murphy represent Disability Rights UK, Inclusion Scotland, Disability Wales and Disability Action Northern Ireland. They make up before you the disabled people’s organisations that I will call DPO.

The Inquiry has reached the point of making important process-related decisions about what evidence to obtain, which witnesses to call and how to examine them.

The DPO want certain realities that affected the people they work with to be borne in mind by the Inquiry when making those decisions.

Contrary to some of the public discourse, the virus and its response did discriminate. Covid-19 posed a drastically higher risk to life and risk of harm to specific population groups of which disabled people were one. Furthermore, for disabled people in particular the consequences of state intervention to manage the virus were fundamentally more negative. These consequences included food and resource scarcity, isolation from essential services, and being put at risk of contracting the virus, for instance in care homes or from home carers lacking unprotected equipment or otherwise being untested.

All of which were compounded by lack of accessible communication and information. Fundamentally the political and administrative response to the pandemic has excluded disabled people. Either no thought has been given to them or thought given has been inadequate or too late.

My Lady, there are around 40 million disabled people living in the United Kingdom. The full impact of the pandemic and the political and administrative response to it upon disabled people cannot be fully understood without some appreciation of their situation as at the beginning of the crisis. On almost every metric the lives of disabled people are what the Equality and Human Rights Commission calls “a journey less equal”. Disabled people overall have lower educational attainment, lower employment and pay rates, suffer greater levels of poverty and significant levels of abuse, social isolation and stigmatisation.

In 2016 a House of Lords select committee published a ground-breaking report that identified the unequal impact of the Equality Act 2010 on disabled people. In consideration of inequalities, the needs of disabled people were too often an “afterthought”. For the future action, the report’s five major themes were: (1) reverse that afterthought syndrome; (2) plan proactively; (3) communicate better by engagement, listening and taking into account disabled people’s views; (4) make rights more accessible and enforceable; and (5) structure Government more effectively in order to discharge its responsibilities and to secure dedication to lasting change.

In 2017 the influential United Nations Committee on the Rights of Persons with Disabilities issued its first report on the UK. Of its many criticisms it found serious deficiencies highly pertinent to this Inquiry, including a lack of consultation with disabled people on policy and legislation that impacted on their lives, ill preparedness to protect them in the events of emergency, damage done by austerity measures, and a lack of reliable data, including impairment-specific and other disaggregated intersectional data.

In a separate investigation report which focused especially on matters of structural discrimination arising from austerity measures, the Committee concluded that:

“… there is reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been crossed in the State party.”

The treatment of disabled people as an “afterthought”, if at all, is one of the essential features of a disabling society. The social model that informs our clients’ perspective, organisation and advocacy is that essential injustices of being disabled are the product of socially constructed barriers and attitudes. For them, the significant issue in the fusion of science and Government that generated Covid policy is that none of it contained disability specialists, service providers, subject matter experts or end users. Disabled people were and are all too often subsumed into other categories such as care homes, the vulnerable or the elderly. Our clients complained in real time that their voices were being, as Disability Action put it, lost in the noise or ignored.

That disabled people were significantly more likely to die from Covid-19 was in due course recognised by some as was a disproportionate impact of lockdown upon disabled people. But the disclosure thus far strongly suggests that the official acknowledgement of and response to these key issues was either belated or insufficient. This was a basic failure of human accounting.

There are tools, my Lady, available in international human rights law to understand what happened to disabled people during the pandemic and how to transition out of it and build back better. The DPO highlight that at this preliminary stage because they will assist the Inquiry in charting its own course in relation to matters like expert witness selection and questioning, and avoiding the errors of exclusion that characterised the Covid response.

The UK has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities, the UNCRPD. Most immediately relevant to this Inquiry is Article 11, which expressly requires:

“… all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of … humanitarian emergencies and the occurrence of natural disasters.”

In the development and implementation of legislation and policies concerning persons with disabilities, state parties are required to:

“… closely consult with and actively involve persons with disabilities, including children … through their representative organisations.”

The Committee’s general comment No. 7 makes clear that such consultation is particularly important with regard to emergency and disaster management.

The obligation that disabled people must be included in law and policy making, to collaborate in their co-design and co-production, is central to the Convention and derives from the original disability rights demand of “Nothing about us without us”.

The UN Committee on the Rights of Persons with Disabilities takes as its starting point that disabled people have long been and indeed still are denied involvement in decision making about matters relating to or affecting their lives. The corrective lies especially in consulting the representative organisations run by disabled people not just for them. The DPO say that that should have happened more during Covid-19. It is of overall benefit to the well-being of society if it can happen now.

The UNCRPD endorses a social model. Article 1 defines persons with disabilities to include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others. Various articles concerning awareness raising and accessibility underscore the extent to which disability is a form of structural and attitudinal discrimination. Additional articles on women, children and adequate standards of living, as well as references in the recitals to disadvantages on grounds of race and ethnicity and poverty, all recognise that disability discrimination intersects with other forms of discrimination.

The UNCRPD also makes clear that disabled people have different needs that derive from their impairments. Whether it be healthcare or education. However, as with all other human rights treaties, respect for the inherent dignity of the human being is the core value through which all other rights must be understood. Dignity is referred to three times in the preamble and in six of the substantive articles. It is the treaty’s core purpose in Article 1 to promote respect or inherent dignity, and in the first of its general principles of interpretation in Article 3(a), being respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons.

The preeminent place of dignity in the UN convention provides an essential way into understanding Covid decision making. However much the calls to aid the vulnerable during lockdowns may have been well meant, the discourse of vulnerability is problematic. It undermines the long-term aim of the DPO to mainstream societal understanding that impairment is not a tragic weakness requiring pity, still less disability should be understood as something which requires charity, welfare, special pleading or ableist sacrifice before the situation of disabled people is granted recognition. Instead, the convention requires in its Article 3(d):

“Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity.”

The DPO question whether UK Government and society has yet been able to do that and how it might fare better in the future. Preparation for Module 2 should bear that question in mind.

That leads to expertise and experts. Regarding Covid’s implications for disabled people, the principal problem with expertise is that for a long time there simply was none; and none of the experts within the SAGE structure, or those in Government who procured their advice, thought to point that out. Of the initial disclosure from the SAGE personnel, it appears that it only belatedly became apparent that core gaps in expert advice, in particular an absence of service providers and end users who would understand the impact of decision making on ordinary lives. Initially Government also failed to incorporate such perspectives.

Even when SAGE sought to correct the problem by including public health and discrimination experts, they focused on other specifically impacted parts of the population such as ethnic minorities, children and the elderly rather than disabled persons.

In the instruction of its own experts and their questioning in due course, the Inquiry is asked to consider this failure of due regard. Part of the gap in expertise can now be filled with the DPO as Core Participants. They. In the reports they have cited, show the absence of expert advice and consultation resulted in failures of foresight of some of the most isolating and resource impoverishing experience of lockdown, for instance food and resource scarcity, that led to hunger and degrading treatment, absence of or limited provision of physical care for disabled people and cessation of respite and day care services. The lack of regard for disabled people’s caring obligations for others, insufficient access to information or lack of communication, the negative aspects of face masks in terms of health and/or barriers to communication, inadequate protection of individuals in social care settings, and the exacerbation of pre-existing race, gender and socio-economic inequalities in society and their consequence for health, employment and poverty.

An issue for Module 2 is how much and in what way were those aspects of human predicament considered at central Government level. In terms of the chosen subject matter, the commission of reporting in Module 2, the DPO are able to make the following general observations at this stage. They do so because it may be relevant to the scope of the expert reporting but also because it will be relevant to the selection and questioning of other witnesses whose evidence overlaps with what experts may deal with.

First, we ask the Inquiry to make available Module 1 reports to Module 2 Core Participants as soon as possible, as has been asked by others, because, like Module 1 itself, they provide context for understanding the decision making to be examined in Module 2. The Long Covid groups and others have raised this and Mr Keith gives some assurance today. What we would like, knowing that they will be disclosed publicly in due course to everyone, is to get them early for our timely preparation. That is important for four reasons:

1. the reports will be significant reference points for the Inquiry in determining future lines of investigation going forward.

2. Module 2 witnesses will be asked about their awareness and/or views of a matter raised in Module 1 reports.

3. the DPO have an obvious interest in the matters to be reported upon by Professor Sir Michael Marmot and Clare Bambra relating to health inequalities and public health structures, and Bruce Mann and Professor David Alexander regarding the civil contingency system insofar as it was set up to risk assess and how much it was ready to respond to their situation.

The DPO of course recognise the necessity to split the Inquiry into modules but, as indicated in my opening remarks, it is important that the context of the disabled people’s situation is appreciated as part of the Module 2 investigation.

Turning then to the areas of expert reporting that you described in your update notes. First, data collection and its use and Gavin Freeguard. That instruction will presumably help to investigate the truism that statistical modelling in aid of policy making is only as good as the data it is based upon. The DPO draw attention to Article 31 of the United Nations convention. It requires disability data collection, including the acquisition of impairment-specific data. As I have said, the UK was criticised by the UN committee for its lack of a unified data collection system and the limited collection of disaggregated and intersectional data in surveys and censuses on the general population.

The Rule 9 statements of the DPO make the same point. If gaps in data affected modelling and policy, then Mr Freeguard and other witnesses should be asked to consider accessibility of data concerning disability and various impairments, including its intersection with other protected characteristics. If there were deficiencies in the data, how much was this accounted for, if at all? Was the collection and use of data too focused on numbers and not enough on provision and end user experience? And if the criticism turns out to be correct, what are the reasons for the UK’s failure to create a useful and aggregated data system relating to disabled people, including those with such other protected characteristics.

The second –

Baroness Hallett: Mr Friedman, I’m sorry, I apologise for interrupting, and you have been making some extremely important points, and that’s another reason I didn’t interrupt, it is just that you are almost reading word for word the written submissions, and I have read them. We all have read them very carefully. And given the number of people who wish to speak this afternoon, I just wonder if it was possible for you to be able to highlight the other points you wanted to make on process as opposed to the background to how disabled people felt about their treatment during the pandemic and before?

Mr Friedman: My Lady, I’m grateful for that indication, and of course I will.

Let me just deal with it then briefly, just to finish this section, on those that you have identified. With regard to the machinery of Government expert, and that which will be dealt with by Mr Alex Thomas, what we apprehend is potential overlap with that which will be dealt with by Bruce Mann in Module 1. The Inquiry has indicated for Module 1 purposes it will look at it at a higher level of generality. But what will follow through, we submit, with Module 2 and Mr Thomas’s reporting is the extent to which recommendations which were made to plan specifically around disabled people in the advent of an emergency decision-making were followed through, and if there were deficits, were they known about and how were they filled.

My Lady, that then leads to the question of devolved Government. You will have seen what we said. Our submission is that that should be focusing to the specific extent to which devolved Governments understood the issues in relation to disabled people differently, how they monitored it differently. And that will be an important compare and contrast going forward.

Finally, on the matter of transnational comparisons, and that will be dealt with by Thomas Hale, we understand that’s going to be a mechanism for the Inquiry to comply with its own terms of reference to consider international practice so far as is reasonable. What we say about that, and following on on an address that has already been made in relation to the World Health Organisation as regards Module 1, is that the World Health Organisation did issue guidance, as did the United Nations General Secretariat, on dealing with disabled persons during the pandemic, and consideration should be given as to how much that guidance was dealt with in other countries and whether there were better practices and better means of protecting the interests and rights of disabled people.

My Lady, that’s what we say on experts.

It does follow from all that I have said on that, and dealing with the issues that have been drawn to your attention by others, that we do support the cause for the Inquiry and all experts to focus on structural discrimination, which includes race, gender, age, childhood and comparative poverty. Such features are valuable to consider in their own right and, as intersecting factors in the lives of disabled people, they can be structurally excluded by cultural values and attitudes on those matters, in addition to social barriers and exclusion arising from attitudes to disability.

Going forward, we respectfully submit that you can investigate these issues in a combination of four ways. You can ask the Core Participants and other witnesses. You can ask your instructed experts. If they don’t know, you need to consider instructing subject matter experts who do. And in any event you should read the most relevant landmark reports that have been written on the subjects.

In addition, we await the Chair’s decision, your decision, as to whether you ought to be assisted by assessors, and the Prime Minister’s decision as to which panel members ought to be appointed.

Can I turn to selecting and questioning witnesses. Given the volume of disclosure that is being produced, we understand that CTI want time to reflect on which witnesses should give live evidence and what the issues should be, and we have heard the dates suggested there of April. Of course, informed consultation cuts both ways, and with that in mind the DPO have tried to identify on their own some provisional issues and questions and some documents to rely upon. To that we add the following.

First, there is good reason for the Inquiry to consider calling Core Participant witnesses from the civil society groups, especially those involved in trying to influence administrative and political decision making in real time.

Second, the DPO acknowledge the instruction of Rule 10 of the Inquiry Rules and CTI’s suggested approach if their note that aims to suggest that CPs are meaningfully engaged in the process of prepared questioning.

Our caveats concern timing and flexibility to ensure that the approach evolves into the best version of itself. Evidence proposals will need time to digest, they should not be treated as inflexible pleadings. 15-minute breaks at the end of each witness should always occur. And if issues can be discussed before September, they should be, which is why we join others, and seemingly Mr Keith himself, in wanting another preparatory hearing before the end of the summer months.

Third, you have asked us to consider what additional Rule 9 request you might issue and we suggest at this stage the Care Quality Commission. That is not least because they would have been in consultation with central Government on core issues.

Fourth, there are certain types of generic questions that have a very proper relevance to this Inquiry, of which we have highlighted three. Unlike a trial or other legal process, it is intrinsic to the nature of this particular inquiry to take an interest in hypothetical questions. For example, what if lockdowns had started earlier? How could exceptions to social isolation regulations have operated for those in specific categories of needs? We say, perhaps like no other inquiry before it, this should be a forum that embraces the virtue of hypothetical questions.

To those can be added questions concerning proportionality of a measure. Human rights law provides a well known fourfold template of such questioning that does not need to be followed slavishly but helps to structure the interrogation of difficult choices. My Lady will know it very well but it may be important to speak about it just a moment in the hearing.

It asks of a measure: (1) whether its objective is sufficiently important to justify the limitations of a fundamental right; (2) whether it is rationally connected to the objective; (3) whether a less intrusive measure could have been used; and (4) whether having regard to these matters and to the severity of the consequences, a fair balance has been struck between the rights of the individual and the interests of the community.

The final generic type of question is about lessons learned. And in keeping with the aims and structure of the Inquiry, that we do not understand to be planning a separate recommendations module, at least at present, witnesses need to be asked what they have learned and how they would do things differently. And the Rule 9 approach to this issue, as already exemplified by the questions put to the SAGE witnesses, essentially incorporates what worked and what could work better, and we submit respectfully that should be developed in oral questioning.

Of the remaining process issues, may I mention then briefly parliamentary privilege and reasonable adjustments. On Article 9 of the Bill of Rights 1689 we have taken the approach that even if it does apply, it would not prevent us from referring to parliamentary reports and other statements as a matter of record, of what was said in them. Also, it is open to any party to do that as a means to establish with the Inquiry the arguable relevance of issues, proposed questioning, further requests for disclosure and potential recommendations, all of which can be done without, in the words of Article 9, questioning or impugning the contents of those sources.

We’ve done that in our written submissions, but to that end the DPO would especially draw the Inquiry’s attention to the Women and Equalities Committee report of December 2020, entitled Unequal impact? Coronavirus, disability and access to services.

There is good reason for it to be placed on the Relativity platform along with the other core parliamentary reports of the period that are already there.

As to reasonable adjustments, the DPO made submissions at the previous module to here in October regarding suggested approaches to Inquiry proceedings. That remains our clients’ thinking and we look forward to the Inquiry’s proposal on that.

Can I make four general observations. First, the provision of a British Sign Language communicator for preliminary and evidential hearings on the YouTube screen would be an important adjustment, including for those who understand sign language but do not necessarily read subtitles or transcripts.

Second, on top of the suggestions we’ve already made, we support the Long Covid groups and others who have made submissions that steps should be take to ventilate and otherwise make safe Inquiry venues.

Thirdly, as regards the practicalities of Every Story Matters, it will be important that the people and organisations appointed to run the projects are appropriate to be involved in what on any view will be an extraordinarily sensitive endeavour, coupled with that the Inquiry is asked to consider and clarify how the listening exercise will be accessible to disabled people.

Fourth, and overall, in its process and in its content this Inquiry is in a position to aim for a gold standard of disability inclusion that others can then follow.

Final, my Lady, Kamran Malik is the chief executive of Disability Rights UK, who make up one of the four organisations that we act for today. He speaks for all of them when he says that disabled people know from long experience that Government all too often sees them as a cost never an asset of value and worth. He adds:

“We are not seen as an investment in our country.”

My Lady, that is part of the inescapable context of the decisions that were made during Covid-19 pandemic. Those attitudes do not go away overnight. You will have to decide how much damage they have done.

Thank you, my Lady.

Baroness Hallett: Thank you very much, Mr Friedman. You have given the Inquiry a great deal of food for thought, and I promise you and those you represent that I will consider all the matters you put before us before in writing and today extremely carefully. So thank you very much indeed.

I think it is now Ms Twite.