Social and Legal Justice for People Given a Mental Health Diagnosis? A Real Possibility, or an Impossible Dream?

Abstract

This article represents reflections on current social and legal issues for people given a mental diagnosis, from a lived experience perspective. The article addresses:

• Major obstacles to social and legal justice for people with this lived experience.

• What differences people with lived experience have been able to make.

• Key challenges for the British Association of Social Workers (BASW) from a lived experience perspective.

The UN Convention on the Rights of Persons with Disabilities is used as a basis for the reflections. The article has a particular emphasis on literature written, or substantially influenced by disabled people, including people with lived experience of receiving a mental health diagnosis. The user-led group Liberation is utilised as an example of what difference people with lived experience can make to obstacles which they experience. Three challenges are made to BASW, related to utilising the Convention to ensure social and legal justice for us, confronting human rights breaches in the draft Mental Health Bill and working in partnership with user-led groups in these spheres.

Introduction

This article represents reflections on current social and legal issues for people given a mental health diagnosis¹, from a lived experience perspective. The article will address:

• Major obstacles to social and legal justice for people with this lived experience.

• What differences people with lived experience have been able to make.

• Key challenges for the British Association of Social Workers (BASW) from a lived experience perspective.

The UN Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations General Assembly, 2006), or the Convention on the Rights of Disabled People as many of us term it, will be used as a particular basis for the reflections; disabled people, including people with lived experience of receiving a mental health diagnosis, had a major influence over the content of this Convention and, as a result, it embodies fundamental human rights from lived experience perspectives.

In this article, there will also be a particular emphasis on writings by disabled people, including people with lived experience of receiving mental health diagnoses, and on written material in which disabled people have played a key part, including grey literature. The experience of many disabled people is that it is difficult to obtain funding for user-led studies and that our input receives very limited attention. The current article aims to provide a counterbalance to that shortfall.

The discussion about what differences people with lived experience have been able to make will focus on the work of Liberation (Liberation, 2022), the user-led group which I have founded as someone with personal experience of a mental health diagnosis and of mental health services.

Major obstacles to social and legal justice for people with lived experience

Key obstacles are:

Socio-economic inequalities

These are a critical and ongoing issue for disabled people, including people with lived experience of receiving a mental health diagnosis, as I know from distressing personal experiences of mine. Disabled people highlighted major inequalities as far back as 2012, when a group of them first approached the UN Committee on the Rights of Persons with Disabilities about the disproportionate impact of welfare benefit changes on disabled people. This led to an inquiry by the Committee under Article 6 of the Convention’s Optional Protocol. The inquiry addressed Articles 19 (on living independently), 27 (on work and employment) and 28 (on adequate living standards and social protection). The Committee upheld disabled people’s concerns (UN Committee on the Rights of Persons with Disabilities, 2016); it reached the conclusion that there was reliable evidence of disabled people’s rights being systematically violated by the UK government.

This major shortfall was highlighted again a year later, during the Committee’s periodic review of the UK government (UN Committee on the Rights of Persons with Disabilities, 2017). It was emphasised further in a report by Alston (2019), the UN’s Special Rapporteur on extreme poverty and human rights. However, the situation has not improved. Socio-economic disadvantages for disabled people are now at an acute stage, still more so for women and racialised communities, as illustrated, for example, by civil societies’ initial submission for the Committee’s 2023 periodic review of the UK (Inclusion London, 2022). The UN Human Rights Council (2022) has also now urged the UK government to address poverty levels amongst disabled people.

People on disability benefits experience much higher rates of poverty than other members of the public and, amongst these, people given a mental health diagnosis are disproportionately affected; we account for four-fifths of the rise in benefit claimants over the past twenty years (Cribb et al., 2022). Food, clothing and fuel poverty are rampant and rents have become increasingly unaffordable (Pollard, 2022). Despite some positive measures, the government's November budget statement continued to leave many disabled people in desperate circumstances (Disability Rights UK, 2022).

Whilst it might be argued that the Covid-19 pandemic, the impact of Brexit and the war in Ukraine lie at the heart of growing poverty in the UK, O’Hara (2020) has suggested that the root cause is, in fact, a neoliberal ethos which puts the responsibility for living in poverty onto individuals and creates a narrative of shame. That certainly fits my own experience, the internalised shame which I have felt when I have not only been going through acute mental trauma, but have needed financial support because of it.

Discrimination and hate crime

Inclusion London, which is led by disabled people, has published a detailed report (Holden and Connor, 2021) that highlights both the extent of discrimination and hate crime which disabled people face and serious failures by police to treat it seriously, or take action against perpetrators. Some key findings from the report are that:

• Recorded hate crime against disabled people has been rising yearly (by 17.4 per cent between April 2020 and March 2021, for example) and the actual incidences appear to be many times higher.

• Such evidence as there is suggests that hate crime disproportionately affects people experiencing mental distress and trauma² and people with learning difficulties.

• When disabled victims of hate crimes report them to Metropolitan police officers they are often not believed, which can result in re-traumatisation, and this experience is not confined to London.

• When disabled people are repeatedly victimised by someone they know, this is mostly on the basis of more than one protected characteristic, for example race and disability. However, ‘disability’ is then mostly not recorded as the motivation for the crime.

• At least 15 per cent of recorded hate crimes involved violence, but only 2 per cent of these have led to a court summons.

The user-led, co-produced research study ‘Keeping Control’ (Carr et al., 2019) explored mental health service users’ experiences of targeted violence and hostility, in the context of adult safeguarding reforms under the Care Act 2014. The study findings were that disabled people, especially those given a mental health diagnosis, were at particular risk of violence and hostility, from practitioners too, and that this risk was compounded by racism, sexism, homophobia and transphobia. The findings also indicated that there were few effective, evidence-based prevention and protection strategies, especially in closed environments such as hospital wards and supported housing. Recently, clear evidence of appalling abuse in mental health hospitals has also emerged (Watts, 2022), abuse which, I have to say, was very much part of my own experience of inpatient psychiatric services, still more so in relation to my gender.

However, despite the lack of research backing (Varshney et al., 2016), a commonly held concept about people given a mental health diagnosis is that it is we who present a particularly serious risk to others. The evidence above is important in redressing the balance, in demonstrating the vital importance of focusing on hate crime and violence directed against people given a mental health diagnosis.

Epistemic injustice

This is another area of key concern. Epistemic injustice (Fricker, 2007) occurs when a particular person, or group of people receive less credibility than others because of prejudice on the hearer’s part. As Beresford and Russo (2015) have highlighted and as I have also experienced myself, the voices of people labelled as ‘mad’ have been and continue to be regarded as secondary during psychiatric treatment and psychiatrists have the right to override them. That concept is the rationale behind the Mental Health Act 1983, a rationale which has been maintained in the draft Mental Health Bill, if not in such an absolute form (Department of Health and Social Care and Ministry of Justice, 2022).

Epistemic injustice is also apparent in the lack of weight which the government gives to groups led by disabled people, including those led by people with lived experience of a mental health diagnosis; hence, the National Disability Strategy (NDS) (Disability Unit and Equality Hub, 2021) was developed without meaningful involvement of organisations led by disabled people and those they represent and so also fell short of an adequate focus on social and legal justice for disabled people (Inclusion London, 2021). Beresford and Russo make links, too, between the lesser weight, or disregard given to studies by survivor researchers and prejudices stemming from epistemic injustice.

Legal injustice

As has been indicated above, both the Mental Health Act 1983 and plans to reform it have been rooted in epistemic injustice. In continuing to be based on mental capacity instead of legal capacity (the right to recognition as a person before the law and to legal agency, regardless of mental capacity), the draft Mental Health Bill is also in breach of the UNCRPD. For example, Article 12 specifically calls on State Parties to uphold disabled people’s right to ‘enjoy legal capacity on an equal basis with others’. However, if the Bill is enacted, patients will continue to have no choice about involuntary detention in a psychiatric hospital provided that the revised detention criteria are met. In addition, although the Bill’s aim is to give increased weight to patients’ treatment choices once they have been detained, there will be continuing limitations; clinicians will still be able to overrule patients provided that the Bill’s new provisions are met.

The maintenance of at least some involuntary detention and forced treatment has been portrayed as justified on the basis that there needs to be a balance between autonomy for people given a mental health diagnosis and risk to themselves, or others. However, as has been indicated above, a more fundamental issue is the extent to which people with a mental health diagnosis are harmed by others. In addition, the claim that Mental Health Act powers are necessary and effective in preventing risk appears to run contrary to a growing body of evidence and so to stem from disability prejudice (Gooding, 2017).

Current and planned mental health law is also prolonging an institutionally-based, medical model approach to people given mental health diagnoses. In line with Article 19 of the UNCRPD, the focus needs instead to be on our having the same right to live independently in the community as anyone else and on ensuring that the necessary resources are in place to achieve that. It feels utterly frustrating that planned reform has been based so heavily on outdated approaches, continuing misconceptions and a continuing failure to recognise our full human rights.

Equally, just as survivor researchers have much to contribute to research (Beresford and Russo, 2015) exactly because of the experiential insights which they have, people given mental health diagnoses have a huge amount to contribute to society exactly because we bring a diversity of experience to society as a whole which will otherwise be lost.

Impacts of direct action by people with lived experience of a mental health diagnosis

As has been indicated above, discussion about this will focus on the work of Liberation, so that points made are directly based on lived experience. Liberation is a comparatively new organisation which operates at a grass roots level. Its aim is to promote full human rights for people with lived experience of mental distress/trauma (mostly, but not always people given a mental health diagnosis), in particular the rights set out in the UNCRPD. We operate in England, but have strong links with other countries both inside and outside the UK. My rationale for founding Liberation is that it has seemed vitally important to have an organisation led by people with lived experience which calls vigorous attention to our rights under the UNCRPD in a context where these are frequently bypassed in political, commissioning and service provision spheres. The points which follow below will particularly relate to Liberation’s campaigns against the social and legal injustices set out above.

Key pieces of work from Liberation include:

• Supporting Inclusion London’s campaign against the lack of involvement which disabled people had in the government’s NDS.

• Contesting the government’s plan to replace the Human Rights Act (HRA) 1998 with a Bill of Rights. Instead, we called on the government to strengthen the HRA further in line with the UNCRPD.

• Campaigning for reform of the Mental Health Act 1983 to be compliant with the UNCRPD.

In the case of the NDS, the legal ruling from the High Court was that the strategy is unlawful (Bindmans, 2022) because of the government’s failure lawfully to consult disabled people and others about it. Whilst this will not have a strategic impact on law, or legal developments, it was, nonetheless, an encouraging step forward. As regards the Bill of Rights Bill (2022), an unexpected, but welcome development was its shelving under Liz Truss’s government. However, this change has since been reversed and, given the widespread opposition to the Bill, it would be hard to attribute it to Liberation’s evidence in particular.

Liberation’s campaign against continuing human rights breaches in the draft Mental Health Bill has represented a particularly uphill struggle; a clinically dominated approach, underpinned by deeply rooted, though ill-founded assumptions about risks which people given a mental health diagnosis present to themselves and others, remains highly influential in parliament, in the media, in services and amongst the general public. Nonetheless, Liberation has been able to join with worldwide user-led organisations to influence global developments. Encouraging signs are that the World Health Organisation (2021) is now endorsing an end to involuntary detention in psychiatric hospitals and forced treatment. In addition, recent deinstitutionalisation guidelines from the UN Committee on the Rights of Persons with Disabilities (2022) have taken strong account of contributions from disabled people; clear use has been made of Liberation’s submission, for example.

There is probably no easy answer to gaining an influence. Just as people from racialised communities, women, older people, people who identify as lesbian, gay, bisexual or transgender and other groups who experience high levels of discrimination have to keep persevering against it, so do people with lived experience of receiving a mental health diagnosis. However, what does now seem apparent is that seeds of real change are beginning to sprout.

Our key challenges for BASW

There is a welcome link between human rights issues addressed in this article and BASW’s Code of Ethics (2021), for example the joint emphasis on tackling socio-economic deprivation and intersectional discrimination and on promoting liberation, empowerment and the voice of people with lived experience. It would also be good to see these connected specifically to the rights set out in the UNCRPD. A disappointment is that the Code does not address epistemic injustice, retains a mental capacity as opposed to a legal capacity focus and reflects the problematic concepts of risk which continue to be embedded in the draft Mental Health Bill.

Important challenges for BASW are to:

• Explore ways in which socio-economic injustice and the combatting of hate crime and discrimination can be embedded further in social work policy, principles and practice through utilisation of the UNCRPD.

• Recognise serious human rights flaws in the draft Mental Health Bill and campaign for legislation which is compliant with the UNCRPD.

• Stand shoulder to shoulder with user-led groups in taking these approaches.

Author Biography

Dorothy Gould is a survivor of mental health services and a long-term activist. She has recently founded a new, user-led group, Liberation, which campaigns for people experiencing mental distress to have full human rights.

Footnotes

References