‘It’s a film about choice and dignity and capacity as human beings’

Helena Bonham Carter was among the guests at the UK's first screening of 55 Steps, a film which tells the real-life story of Eleanor Riese's battle in the courts for the right to refuse psychiatric medication. Following the film a panel, featuring the film's writer and producer Mark Bruce Rosin and human rights lawyer Colette Hughes – played in the film by Hilary Swank – discussed some of the issues mental healthcare and society more broadly faces.

Riese won her case in the California Court of Appeals in 1987 on behalf of herself and other people institutionalised under mental health legislation and forcibly medicated. The Court ruled that people who are involuntarily committed to institutions for short-term crisis care could refuse anti-psychotic medicines if they had the capacity to give or withhold informed consent. Sadly, not long after her victory in the Courts and at the age of 47, Riese died as a result of the longer-term side effects of the psychiatric medication she had taken.

Bonham Carter said the film had been a long time in the works. While she was initially asked to play the part of Colette, by the time shooting rolled around she was 'too old' for the role and was asked to play Eleanor. Chair of the discussion, Clinical Psychologist Dr Sara Tai (University of Manchester), asked her about her research in making the film. 'My main thing was not playing illness: she was such an amazing character herself and it was her character I loved… I had the luck to meet the real Mort Cohen [also a lawyer for Riese]… he said she was like a trade unionist in all her work. She wasn't doing it for herself, she was doing it for every single other person she saw as being abused or disrespected or ignored who she deemed had a right to be heard.'

Rosin, who as a college student had volunteered at a psychiatric hospital, said he'd found out about Riese's case in 1991 through the lawyer Jim Price. He introduced Rosin to Hughes and Cohen. 'Through Colette and Mort I got to know Eleanor. What Helena just said about Eleanor was communicated to me, that Eleanor was like a trade unionist and everything she did she did for other people. The photograph of Eleanor you saw at the end of the film... that photograph inspired me for 25 years to continue working on the film, that and the memories of the people I knew in the mental hospital whom I knew, like Eleanor, had competency beyond just what I thought before I went to work there.'

The discussion moved onto homelessness, mental ill health, and society's role in supporting people who are struggling and distressed. Sir Norman Lamb MP, former government Health Minister, said the disadvantage suffered by those with mental health problems was a human rights issue. 'We can say "Oh, awful things happen in America it doesn't happen here"… well, it does happen here. There are routine breaches of human rights in institutions in this country… There are 3,500 beds in locked rehabilitation units, the Care Quality Commission has said that many of the people in those beds are perfectly capable of living independent lives in the community with support, and yet we lock them up. Now to lock someone up who doesn't need to be locked up, who hasn't committed a criminal offence, is an unacceptable breach of their human rights, full stop.'

Professor Peter Kinderman, a Clinical Psychologist and former President of the British Psychological Society, said there was a need to shift debate from medicalised sympathy for people to advocating for their rights. 'There's a shift in the zeitgeist which is going on here which is very welcome.' Kinderman has also been involved in informed consent for mental health patients for more than a decade. He pointed out that in Scotland and Northern Ireland the Mental Health Acts include a clause that people cannot be detained and treated against their will unless their decision-making capacity is significantly affected.

'In England it's still the case that under the Mental Health Act you can be detained and treated against your will even if you have the ability to understand and exercise informed consent and I've always thought that that is wrong… Let's have a campaign to get out there and ask people whether they want other people to make decisions about their healthcare on their behalf or whether they'd actually like to be given the information and then offered the choice themselves.'

Some of the most poignant comments of the evening came from Hughes, describing the sheer misery many in the US, and elsewhere, are subject to simply as a result of their status in life. After Lamb raised the issue of face-down restraint, often leading to injury or even death, Hughes pointed out in the US around 60 per cent of those killed by police are identified as having a psychiatric disability. 'We have to take them [the police] out of the loop and have people with the skills and compassion to do this. That means involving people who are labelled as mentally ill in this whole process, bringing their experiences forward, teaching us, the public, what needs to be done. It is known what needs to be done… people need food, clothing, shelter, love, direct services for behavioural issues for substance abuse issues, you cannot wait for six weeks and eight weeks to see somebody.'

Hughes said she believed that Bonham Carter was 'the only actor on the planet' who could have played Riese and hoped the film would be seen by those who needed it. 'There are many, many people who have been helped by taking medications… this isn't an anti-treatment film, it's a film about choice and dignity and capacity as human beings. The UN has said we need to restore all legal capacities to all people and cited specifically people with psychiatric disabilities and the homeless and we have to maximise people's capacities so they can grow, claim their lives, their experiences and begin to recover in the way that they can.'

The final word of the evening went to a survivor in the audience, Rai Waddingham, who has experience of anti-psychotic medication, detention and seclusion, who campaigns with the Hearing Voices Network in its review of the Mental Health Act. 'It's easy to watch that and say it's America... we don't do that. We do that every day in England and I want us to feel horrified… How on earth are we thinking it's okay to do that? Whether or not people are seen as ill, whether or not they've made an informed choice, this is not okay… We have alternatives to treat people in distress and we have to fight for them. And if we're not fighting for them what the hell are we doing here? So I want us all to go and fight.'

- Reviewed by Ella Rhodes. To read Peter Kinderman's review of 55 Steps see tinyurl.com/y24glalf and to read more from Waddingham's view of the film see a blog post by her here tinyurl.com/y2yeslov

The film, which was shown at Toronto Film Festival and in Cologne, was not released more widely but can be bought on several streaming services including YouTube and Amazon Prime.