The publication of the Mental Health Act (MHA) Review has been greeted with consternation by many disability and survivor/user activists and groups. The Interim Report had made it clear that it would not follow the UN Convention on the Rights of the Persons with Disabilities’ (UN CRPD) recommendations, and this was confirmed in the Final Report. As Simon Wessely states in his foreword:
“Some will point out that we have not gone as far as to recommend fully implementing the UN Convention on Rights of Persons with Disabilities (CRPD), or to be precise, how that is interpreted by the Committee charged with its implementation. And they are right. We haven’t.”
The UN CRPD is an international human rights treaty of the United Nations intended to protect the rights and dignity of persons with disabilities. It has been ratified by 177 parties, including the UK and the EU. It has served as the major catalyst in the global movement from viewing persons with disabilities as objects of charity, medical treatment and social protection towards viewing them as full and equal members of society, with human rights. People with mental health difficulties are included within the CRPD as “persons with psychosocial disabilities.” The CRPD covers the rights of person with disabilities and has a direct bearing on the MHA Review: it sets out, for example, the right to liberty and security (Article 14), the right to legal capacity (Article 12), and the right to freedom from cruel, inhuman or degrading treatment or punishment (Article 15).
There are at least two possible views on why the CRPD was not incorporated in the Final Report. One of them is that Simon Wessely and his team were simply never going to: for example, they did not actively involve organisations such as the National Service User Network who advocated clearly for a CRPD compliant position, and who shared deep misgivings about the process of the Review. The other possibility is that the aspirations of the CRPD are so far away from practice (what is known as the implementation gap), and so radical (arguably proposing an end to detention altogether), that they are simply not realistic. I think both of these arguments can be true: that the Review did not engage sufficiently with the letter and spirit of the UN CRPD, and that the CRPD brings new troubles to mental health legislation and practice, which need to be explored.
This is not an easy piece to write. For one, it brings up difficult questions. I worked at an EU level in mental health policy and advocacy, which has meant engaging with the UN CRPD, and I am also deeply involved in hearing voices work and wider mental health activism in the UK. However, I’m not a service user and I haven’t been detained under the MHA.
I am also aware that any argument seen to be critiquing the UN CRPD might be pounced upon and weaponised by those who back the status quo, in order to serve their own position. Indeed, that is part of the problem: where is the space for us to critically interrogate the UN CRPD? The UN CRPD was such a big, legislative win, it pulls us towards consensus and unity. However, whilst unity is strategically important, we must not let it obscure a number of uncomfortable questions and dilemmas which we need to attend to.
The MHA Review focused on UN CRPD advocates’ call for an end to detention – and the implicit call to end both mental health and mental capacity legislation. In my view, the Review was right to reject these recommendations: not because of the substance of the argument, but because they are simply not representative of most survivors’ and service users’ positions.
The ‘service user community’, if it exists, is not a monolith. It is deeply heterogenous, and is comprised of individuals and collectives with different experiences, backgrounds and socio-political positions. Whilst the argument for an end to detention is compelling in its clarity and conviction, I have yet to see a survey or study where the majority of service users and survivors call for it: in fact both smaller and larger samples suggest that the issue is divisive, with many taking a nuanced position based on their personal experience.
However, the abolition of detention is the position held by many DPOs (Disabled Persons’ Organisations) and larger advocacy groups. This lays open an uncomfortable divide between the interests and desires of survivors and service users, and their representative bodies. Moreover, the mechanics of who gets to sit at the UN table and represent survivor/service user interests are far from transparent and straightforward. These complex dynamics are not just reserved to mental health. In my experience as Director of Mental Health Europe, civil society at a European level often struggles to obtain the considered buy-in of national or regional entities or individuals, not least because of the obscure technicalities of EU or international lobbying. Representation is the cornerstone of “nothing about us without us”: but when it comes to these international negotiations, it is far from a given.
The UN CRPD and mental health
Another point of contention is how well the CRPD serves mental health. Are the issues facing people with disabilities the same as those facing people who experience distress or madness? There are certainly many convergences and intersections. But there are also differences, and, as Anne Plumb, a veteran survivor activist, argues, if we lose sight of these in an attempt to build a broader, more powerful and more socially just coalition, this can create new troubles.
For example, the issues facing people experiencing distress and madness are not the same in every part of the world. It is not surprising that the language and mission of the UN CRPD have been taken up with the most vigour by those in the global south and those in ex-Soviet countries. In the UK, the large asylums closed in the 1980s, and the context now is austerity, the huge cuts to services across the UK, and the cuts to welfare. Many activists in the UK argue that the battle is now less about, in the words of Helen Spandler, decrying psychiatric abuse, but spotlighting psychiatric neglect. In the political context of the UK, arguing for an end to detention is dangerous, because it might be used to shut down valuable or life-saving services. But not far from the UK, in the Caucasus, in Georgia or Armenia, this is a live issue. Our contexts shape us and our activism.
Scholars and activists have highlighted a number of other tensions between disability and mental health. The social model of disability, on which the CRPD rests, uses the concept of impairment: but is hearing voices, for example, an impairment? Does the social model of disability reflect the interiority of the experience of distress or madness, and its richness and nuance? How does recovery fit into it all? These are highly charged issues. Essentially, one assertion is that mental health has been shoehorned into disability, because that was the way to get the legislation through – but that disability doesn’t do it justice. A small, personal experience of lobbying at an EU level might illustrate this. When writing joint statements or submissions with EU disability organisations, I had to fight to add ‘and psychosocial disabilities’ to the end of every sentence. It is true that there are many lobbies in civil society, and everyone is trying to centre their own voice. However it is also indicative of how disability does not automatically invoke ‘mental health’, and how they are not always easy bedfellows.
The spirit of the UN CRPD
It is debatable whether these wider issues influenced the MHA Review’s rejection of the CRPD’s recommendations. Certainly, some commentators have analysed it an example of a failure within the CRPD. As Oliver Lewis, a barrister and mental health and capacity law expert argues:
“That a well-resourced, multi-disciplinary Review with service user involvement has rejected the approach of the CRPD Committee is a blow to that committee’s credibility. It adds to the growing number of governments, courts and expert committees that have rejected its recommendation to “abolish” mental health-based detention and involuntary treatment.”
Notwithstanding concerns about the level of service user involvement in the Review, this seems to me a reasonable concern, and one that advocacy organisations should attend to.
If the aspirations of the CRPD are seen as too far removed from reality, and too intransigent, then does it lose its effectiveness as an instrument for reform?
However, the rejection of the CRPD’s recommendations could also be seen as a failure on the part of the MHA Review. Throughout the Final Report is the framing of a false binary between, on the one hand, an individual’s right to liberty, and on the other, her right to health and life. The latter, it seems, always wins. However, what Wessely’s report has failed to do is engage with the spirit of the UN CRPD, and the many nuances within it. It has also – intentionally or not – focused on the more radical recommendations of the Convention to justify its stance on the CRPD, without grappling with the wider issues at stake, and the considerable scholarship and activism surrounding them.
In mental health, the UN CRPD is often read as a clarion call for an end to detention. In fact, the Comment which sets this out (General Comment 1 on Article 12) is generally seen in legal circles as authoritative but not binding (a position disputed by the Committee who drafted it). The main body of the UN CRPD does not call for an end to detention, nor an end to mental health legislation. Indeed, if it had, it is unlikely the UK and other State parties would have ratified it. Article 12, in my view the most important article of the CRPD, which sets out the right of persons with disabilities to equal recognition before the law, is in fact both ambiguous and radical. Lucy Series argues that the ambiguity was a necessary cost of unity in the negotiations of the Convention: there is arguably wriggle room within the wording of the Article itself to permit substituted decision-making for those State Parties who desired it. However, it is also radical: it presents a clear challenge to conventional wisdom, and invites us to reflect deeply on legal personhood.
Whilst there is no survivor/service user consensus on detention abolition, as set out by the Committee, the principles of the CRPD, as set out by the Articles, attract broad support. The CRPD invites us to centre service users and survivors. The MHA Review, on the other hand, positions service users and survivors as one set of stakeholders amongst many. For example, it is laudable that the Review seeks to “rebalanc[e] the system to be more responsive to the wishes and preferences of the patient, to take more account of a person’s rights, and to improve the ability of patients to make choices even when their own circumstances make this far from easy.”
There are many positive examples in the Final Report of this attempt to “shift the dial”, including recommendations about Advance Choice Documents, Independent Mental Health Advocates becoming opt-outs, and the evidence threshold for Community Treatment Orders being raised. But because these decisions are framed as a balancing act between autonomy and protection, a negotiated outcome between different stakeholders, they fall short of the spirit of human rights legislation, including the CRPD. For example, the right to refuse Electro-Convulsive Therapy in advance through a capacitous decision made through an Advance Choice Document can still be overturned in the High Court, if there is risk of life. I can think of no such equivalence in physical health care. It is no wonder that some argue that the Final Report is in fact a psychiatrist’s report, which centres the voice of psychiatry.
It is disappointing that the Review did not choose to acknowledge the body of work around the CRPD, but in some ways, it is perhaps unsurprising. We, in wider society, are indeed not yet ready for some of the conversations which the UN CRPD is opening up for us. We are not ready in the UK to have a wider conversation about the right of people to die by suicide, and whether (and how) the state has the right to intervene. We take it as a given that mental health care is a good thing. Is it? We believe that medicine and psychiatry are inherently benign. Are they? We believe that the right to health and the right to life override the right to liberty. We think we know what we mean by health, and what we mean by mental disorder, capacity and risk. In fact, our approach to mental health is still drenched in paternalism, and we struggle to see service users as right-holders.
The CRPD helps us reflect on these issues, not by providing neat answers, but by inviting us to question them more deeply. The challenge for those of us advocating for a rights-based approach in mental health is to hold the clarity of the CRPD’s call to action as well as its complexities – to resist easy answers – and to engage more fully with the people we seek to represent.
First published in Mental Health Today on 14th December 2018