IT’S TIME FOR FULL LEGAL EQUALITY: WITHOUT IT, IT WILL NEVER BE FULLY OK TO TALK ABOUT MENTAL HEALTH

Author: Liz Sayce, disability rights commentator

In 2017 the United Nations Committee on the Rights of Persons with Disabilities recommended that UK Governments should:

‘Repeal legislation and practices that authorise non-consensual involuntary, compulsory treatment and detention of persons with disabilities on the basis of actual or perceived impairment’.

  • In other words ‘mental disorder’ or any other impairment should not be one of the criteria for compulsory treatment or detention. This is discriminatory: someone with a ‘mental disorder’ can be detained because of a potential future risk when someone with no mental disorder (but with, for instance, a history of violence when drinking) with the same future risk cannot be detained. Generally citizens are not detained because of something they might do in the future; and studies show that to prevent one person with a mental health condition from committing, say, a homicide you would need to detain 5000 who would never commit such an act[1].

‘Abolish all forms of substituted decision-making concerning all spheres and areas of life by reviewing and adopting new legislation in line with the Convention to initiate new policies in both mental capacity and mental health laws’[2].

The UK Government ratified the UN Convention on the Rights of Persons with Disabilities in 2009, with cross-party support.

So we might expect that mental health organisations would welcome the Independent Review of the Mental Health Act, announced by the Prime Minister in October, as a major chance to get rid of our discriminatory laws and achieve full equality and human rights. Instead reaction has been strangely mixed:

  • A Maudsley Debate on the motion ‘This house believes that fundamental reform of the Mental Health Act is required to reduce discrimination and unnecessary detention’ was actually defeated in November
  • Some media and social media commentators see the Review as a potential waste of time, a ‘dangerous distraction’ from addressing resources as Professor Scott Weich put it[3], when ‘Decades of chronic underfunding have led to a crisis in mental healthcare’ as Clare Allen put it[4].
  • Mental health organisations, and the Mental Health Alliance that brings them together, are generally in favour of law reform but have not yet been clear whether they question the way the current law permits compulsory treatment and detention on the basis of risk analyses that would not apply to other citizens

Future historians may look back on that Maudsley debate with amazement, as a group of (mainly) mental health professionals voted against achieving law that complies with the UN Convention. As Normal Lamb MP put it: ‘How can we support a law that perpetuates discrimination?’[5]

It also may seem strange that commentators were pressing for services rather than legislative reform. The UN Convention says that disabled people (including of course people with ‘psycho-social disabilities’, ie mental health challenges) have a right to live independently and be included in the community – for instance through ‘access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’. Surely we want both full legal equality AND support to live in the community. Why choose?

Some commentators also seem keen to restore services like day centres that segregate people - rather than question what type of services people most want for the future to enable them to participate fully in society.

Most social movements see full legal equality as one fundamental milestone in their progress: think of the US civil rights movement overturning segregation everywhere from lunch-counters to universities, or the LGB movement in the UK campaigning for an equal age of consent and equal marriage.

Yet in mental health there is no clear, united campaign for law enshrining human rights.

Meanwhile many in the mental health world are working strenuously for cultural change – changing the conversation in mental health, making it easier to speak openly – but without pressing for equality under the law. I want to suggest that cultural change won’t happen without legal change - without full equality and human rights. 

Let’s talk about mental health – or let’s act

Who could argue with the aspiration to make it easier for us all to talk about mental health challenges? Breaking down silence must, surely, change culture and improve lives.

But history tells us that where silence is influenced by imbalances of power, cultures don’t tend to shift without changes to real, tangible inequalities.People don’t break silence in large numbers until it is, and feels, safer to speak. Even when individuals seize their courage in both hands and speak openly, they often maintain some secrecy. Think, for instance, of John Fryer, the psychiatrist who addressed the American Psychiatric Association in 1972 with the words ‘I am a homosexual. I am a psychiatrist’ – and did so wearing a mask.

He was certainly pioneering – but with homosexuality listed as a mental disorder, and psychiatrists supposed to be the healers not the ‘mentally ill’, he chose to remain (initially) anonymous. Only after it was de-classified as a ‘disorder’ (in 1992 in the UK) did gay mental health professionals gradually begin to feel it was safe to be out.

I’ve been thinking about secrets held by whole groups of people – and what has enabled people to break through the silence. Bear with me for some digressions, which may have some relevance to the current review of the Mental Health Act.

Where large groups of people remain silent about something, one factor driving it often seems to be power – or powerlessness.

Sometimes silence may help preserve power. For instance, historically, members of the Masons may not have wanted to divulge the rituals and signs that underpinnedtheir influence to secure jobs and advantage for their members. Or Governments may want to conceal or downplay evidence that could affect their reputation: on the 70th anniversary of the partition of India, for instance, it was striking how many British people – including those of Indian/Pakistani descent – said during BBC coverage how little they knew aboutits impact (the biggest migration in human history - around 14 million people, the large numbers of deaths). Some commentators ascribed blame for this to the legacy of the British Empire[6], which Orwell had noted tended to conceal atrocities, thereby allowing the British to ‘think of England as a democratic country’[7].

But often silence by whole groups of people stems not from the urge to preserve power – but from powerlessness and fear. People are in effect silenced by those with greater power, choosing silence for fear of negative consequences. 

In the 1980s, British people diagnosed with HIV often kept it secret – for reasons including fear of being hated or rejected when public debate linked HIV, homosexuality and illegal drug use; and fear of losing jobs and livelihoods. Following some of the most dynamic campaigns in British history, including the slogan ‘silence = death’, anti-discrimination law was passed (in 1995) and investments made in research and treatments. A major cultural shift influenced and was influenced by the changes in law and policy.

To take a radically different example, in Spain, after the fall of Dictator Franco in 1975, people accepted a transition to democracy on the basis of a ‘pact of forgetting’ (‘pacto del olvido’). They pushed aside memories of a past civil war and its aftermath, the atrocities committed by the regime (thousands executed, many purged from civil service and other jobs for their political views)[8]. But those on the Franco side could visit memorials to their families who had died as heroes in the conflict; whereas those opposed to Franco often did not know where their relatives lay buried in unmarked mass graves. In that sense the ‘forgetting’ was imposed on the ‘losing’ side. ‘I have no idea where my grandfather is buried…Can you imagine? ….The fact that it is left to an Englishman to take guided tours of this place [a mass grave] tells you something. We have just stuck a bandage on top of the wound and forgotten about it. It won’t do’[9].Only in the 2000s did people start searching in earnest for the graves of theirrelatives.

In the Stalin era in the Soviet Union, Figestells the stories of ‘the Whisperers’ – the people who kept secrets even from their own families, or just whispered to each other for fear of repercussions[10]. For instance, Antonina Golovina was exiled at the age of 8 to a labour camp, branded a ‘class enemy’, excluded from higher schools and many jobs and always vulnerable to arrest. She did not even tell her husband about her past – until the 1990s when Gorbachov’s policies of glasnost were introduced and open criticism of Stalin’s repressions were appearing in the media. At that point she discovered that her husband too came from a family of ‘enemies of the people’ and they were at last able to talk freely to each other.

Some of these examples are extreme and of course the position of people living with mental health issues in the UK is nothing like the experience of people living under Stalin’s repressive regime. But what the different examples suggest is that imbalances of power can silence people – in different ways and degrees – and that changes in the balance of power can drive a new openness. In the Soviet Union it was new policies of glasnost that enabled people to break their silence. For people living with HIV, it was changes in health policy and new laws outlawing discrimination.

Changes in law, policy and culture re-inforce each other. Consider the numbers of LGB people who ‘came out’ following the equalisation of the age of consent, civil partnership and finally equal marriage in the early 21st Century. Of course, there were people who were ‘out’ before that – but as the discriminatory laws fell like dominos in the 2000s it simply became safer and safer, more and more accepted, to be open.

What does this mean for mental health law?

People with mental health conditions still fear being open. They are significantly less likely than those with other impairments or health conditions to be open at work. The reasons they give are fear of being judged less competent, being passed over for promotion or being first in line for redundancy[11]. Where they are open, it is more likely to be to a colleague than a line manager or HR (ie anyone with power over their career). Testimony from people with lived experience repeatedly shows that powerlessness and fear contribute to people’s decisions not to be open. A Mind survey suggests these fears can be well-founded: one in 5 people who had been open at work were forced out of their jobs[12]; the British Social Attitudes Survey 2016 found a third of the public surveyed thought thatthe medical history of someone with depression or schizophrenia should make a difference to their chances of gaining promotion; and the Equality and Human Rights Commission found people with mental health conditions earned up to 42% less than their non-disabled peers[13].

For those subject to compulsory detention and treatment, research suggests (unintended) negative effects, for instance: ‘The awareness of being deemed to require compulsory detention generates such negative attitudes as self-denigration, fear and unhealthy repression of anger…. Furthermore, the fear and anxiety associated with involuntary admission delays the recovery process’[14]. Some people, especially those from BAME communities who are much more likely to be treated compulsorily than others, lose trust in services because compulsion is experienced as traumatic.

Rather than focus just on changing cultures, or changing conversations, we need to look at the issue of silence through the lens of power.

We have taken some steps towards greater equality. In the 1990s people with lived experience campaigned successfully (alongside other disabled people) for anti-discrimination law, which was gradually expanded and strengthened through the 2000s. In 2009, mental health, cancer, HIV and disability activists came together to campaign successfully to stop a particular type of employment discrimination (in effect by debarring employers from asking about prior experience of health issues before job offer). In 2013 Government passed the Mental Health (Discrimination) Act putting an end to the exclusion of people who have been sectioned from being MPs; and to the bar on people receiving psychiatric treatment from serving on juries or being company directors.

But we do not have full equality. The Equality Act 2010 needs improvement. The vital requirement on public sector organisations to positively promote equality – not just offer redress after discrimination has occurred – is neutered by the fact that organisations can meet the requirement just through process, with no outcomes achieved. And declining access to justice means the law for many exists only on paper[15].

There is another fundamental lack of equality: the continued existence of mental health law that says that if you have a ‘mental disorder’ you can be detained and treated against your will on the basis of assessments of risk that would never apply to other citizens.

Civil rights movementshave always campaigned for full equality before the law – from ending segregation on buses, to votes for women. In mental health, ending the profound inequality of different rules allowing compulsory treatment and detention for one group of citizens is vital to an equal position in society.And greater equality would make it easier to be open. 

But is it practical?

There are complex and sensitive practical issues to consider. There are times when people face challenges in making decisions. Good practice – as under mental capacity law – is to ensure support to enable the person to take decisions. But sometimes people are (often temporarily) not able to take decisions even with the best possible support. In this instance, someone with a mental health condition should be covered by the same laws and fundamental justice that cover people whose challenges result from different sources (being drunk, having dementia etc). Codes of Practice could be drawn up to address the specific issues relating to mental health. The UN Committee on the Rights of Persons with Disabilities tells us what such laws should look like: essentially, replacing substitute decision-making with supported decision-making and – if decisions have to be taken without the person’s direct involvement at that time - rooting decisions in people’s own ‘will and preferences’, not in an expert’s view of the person’s ‘best interests’. This could involve drawing on an advance directive – which a person with recurring difficulties may have written; or piecing together information on the person’s will and preferences from all sources possible. This would reflect full equality before the law. George Szmukler, a clinician himself, has explored in depth how law and practice could reflect equality.

Thinking on the future of mental health law and mental capacity law have tended to be done separately. It would be useful for people with expertise in both areas – the expertise of lived experience, of law, of clinical practice – to come together to work on the detail of the legal and practice changes needed.

There are numerous issues for services to consider. Developments that could help are increased investment in user-led services and peer support, including those led by people from BAME communities. We also need to learn from the best evidence on ‘no force’ approaches – like Merseyside’s award-winning ‘no force first’ initiative, that places relationships within services at the heart of a successful approach to reducing restraint[16]– and move towards services that take a proportionate approach to risk, serving people, not containing them. We need an honest debate about risk that acknowledges that risks are impossible to predict accurately. We need to stop incentivising clinicians to be risk-averse out of fear for their reputation (it’s always easier to blame a clinician for the one person who hurts themselves after leaving hospital than for the many compulsorily detained unnecessarily – and it is concerning how many people who start out in hospital on a voluntary basis are sectioned at the point they choose to leave).

We need a genuine shift in the balance of power.

Concluding thoughts

Reviews of mental health law do not come along every day. This is the moment to address a major power imbalance that people living with mental distress experience. We could learn from legislative developments in Northern Ireland and Canada that take us in a better direction than our own mental health law.

Cultural change is not enough on its own. In the 1990s disability discrimination law was brought in against the criticism that all we needed was more ‘education’. Disability activists rightly fought for legal rights because the educational approach was failing – and progress did indeed speed up after the new law was introduced, ushering in better employment opportunities and improved accessibility.

Full equality and culture change go hand in hand. They re-inforce each other. That is why we need fundamental change to our mental health law. We need full equality before people will universally believe it is OK to talk about mental health. As long as we are not equal, some people will stay silent due to powerlessness.

Money for services is essential but is not enough on its own. As George Szmukler put it ‘Resources are not an excuse for discrimination’[17]We need a major power shift so that people are ‘served’ with a radical loss of co-ercion. And we alsoneed rights to participate in the community, which means investment in support for community living.

In the UK we need a movement for new law that enshrines human rights as a core strategy for full and equal participation in society.

All of this could be developed by service users, family members and organisations  coming together – linking up with movements of people working to change mental capacity law - to press for the UN Convention on the Rights of Persons with Disabilities to be implemented in the UK. Some things would take time – transforming services, devising codes and guidance to shape new approaches in services.

But it would be worth it. A change in the law is a fundamental milestone on the way to full citizenship.

[1] Crawford M (2000) Homicide is impossible to predict. Psychiatric Bulletin 24, P 152

[2] UN Committee on the Rights of Persons with Disabilities (2017) Concluding Comments

[3]Maudsley Debate November 22 2017

[4] https://www.theguardian.com/society/2017/oct/10/more-talk-mental-health-act-theresa-may

[5]Maudsley Debate November 22 2017

[6] Von Tuzelman (2017) Who is to blame for partition? New York Times. https://www.nytimes.com/2017/08/18/opinion/india-pakistan-partition-imperial-britain.html

[7] Orwell G, cited in Haycock (2012) I Am Spain. Old Street Publishing

[8]Tremlett G (2006) Ghosts of Spain: travels through a country’s hidden past. Faber and Faber

[9]Coman J (2016) Eighty years on Spain may at last be able to confront the ghosts of civil War. The Guardian 29 May

[10]Figes O (2007)The Whisperers. Private Life in Stalin’s Russia. Penguin Allen Lane

[11] Sayce (2010) Doing Seniority Differently. A study of high fliers living with ill-health, injury or disability. Disability Rights UK

[12]https://www.theguardian.com/careers/careers-blog/mental-health-at-work

[13]https://www.equalityhumanrights.com/en/pay-gaps/disability-what-does-pay-gap-look

[14]Pandarakalam J P (2015) Formal psychiatric treatment: advantages and disadvantages. BJMP 8 (4):a837

[15] House of Lords (2016) The Equality Act 2010: Impact on Disabled People. https://publications.parliament.uk/pa/ld201516/ldselect/ldeqact/117/117.pdf

[16]http://www.merseycare.nhs.uk/about-us/striving-for-perfect-care/no-force-first/

[17]MaudsleyDebat e22 November