She was admitted to the hospital several times in Hong Kong. Officially the admissions were recorded as ‘voluntary’. Yet some of the times she was forced to agree with the admission: ‘If you don’t sign yourself in, we will make it compulsory’, she was told by the professionals. After several rounds of admission, did she find that the medicines she took and the professionals in the hospital she encountered helped her? She didn’t know. What she knew was that when she felt very low and panicky, she would not consider seeking help from them, in fear of being forced back to the hospital. She suffered from paranoid thoughts – it is not surprising that the threat from hospital staff that she would be locked up if she was not cooperative could feed into her ‘feeling not being in control’ paranoia.
She was a clerical support staff before her first breakdown. Yet, after her first hospitalization, she could not find similar jobs again. This is partly because of the side effect of the medication that made her sleepy and made it hard to concentrate. But also it was because of the disadvantaged position of a middle-aged woman with low educational qualifications in the labour market in Hong Kong. At first, she tried to be a promotor in a supermarket. But she quit because she could not stand for long hours by the promotion booth – a common working condition a promoter faces in Hong Kong. She asked if the community nurse could refer her to jobs. But what were available, she was told, were jobs in sheltered workshops. Her working ability was way beyond what these jobs require. She then went back to the mainstream labour market and tried to be an assistant in care centres for the elderly. But often she quit before anyone fired her because of the fluctuating symptoms and feeling tired all the time which made it difficult for her to cope with a 12-hour shift (in fact, difficult for anyone with or without having received a psychiatric diagnosis). Yet, she kept on trying. She joined a re-training programme to become a healthcare assistant. Although she did not have much confidence in herself, she was happy that she stayed put but worried about the result of the exam.
This is the story of my fellow service user friend in Hong Kong. Soon after she took the exam, we lost her to suicide. She did not leave any notes behind so we don’t exactly know why she took this decision. Yet her (un)recovery journey was a hard battle in the face of diminished life chances – one that is filled with doubts, a loss of faith, distraught about failure to earn a living for herself. Her experience was a series of disempowerment: She was disempowered by the interaction with medical service, the side effects of the medications, the labour market and the detrimental working conditions in Hong Kong.
Recovering mental health in Hong Kong
Reflecting on my own recovery journey as well as the journeys of my friends in Hong Kong, I have two sets of questions. First, mental health services are supposed to help us. Why would my friend (and I as well) experience it as disempowering and even sometimes traumatizing? Second, I saw the role of social inequalities at play – the greater the social inequalities one experienced, the harder it is for one to rebuild one’s life. If recovery is like moving up a slope, those who face economic hardship are up against a very steep slope. And it is not just a matter of class inequality. In my friend’s case her disadvantaged labour market position was a result of intersecting gender inequality and ageism. Campaigns against mental health discrimination ask the public to change their attitude to be more accepting. Yet, the disadvantages my friend faced are much more about individual attitudes. It is about social conditions for recovery. What are the structural barriers that service users face that make recovery and living a life they value so hard? What are these disempowering environments and what can be done about them?
Recovery, structural disadvantage and the Chinese Diaspora
Later on, I had an opportunity to work in the UK and learnt about the service user movement there. I realised that my concerns in the Hong Kong resonated with what they advocate. This can be due to the colonial history of Hong Kong where the psychiatric system is modeled on the development of western bio-medical system in the UK. Service user activists in the UK have been criticising that the psychiatric system can do harm to the service users due to coercion. Service users often find that they are deprived of the rights to speak for themselves or to make decisions concerning their own treatment plans. The service user movement asserts the importance of experiential knowledge – knowledge that are incepted from personal experience of mental distress or using services – to inform or challenge knowledge about mental health and strategies towards recovery. Also, in the face of the dominant individualised bio-medical model in the mental health system, service user activists have long advocated a social model that challenges the disabling environment which limits the life chances of service users. Inspired by the service user movement in the UK, I undertook a research project on the Chinese communities in the UK and explored the recovery journeys of the Chinese service users there.
The outcome of the research is my book, Recovery, Mental Health and Inequality, which captures the lived experience of a diverse group of Chinese service users in the UK: carers for family members experiencing distress, overseas brides, workers in Chinese catering business and students. It is clear that social inequalities shaped the course of their recovery journeys. These inequalities manifest themselves in different forms such as class relations, gender, ethnicity, psychiatric power and mental health discrimination. While some found that using mental health services helped them regain their daily functioning, some expressed grievances about the imbalance of power between clinicians and service users. The latter group became cautious in building a relationship with the professionals. Some were increasingly aware of their need to retain control of their lives. Some even became a ‘service avoider’, which led them to become further isolated.
Looking at their experiences to rebuild their lives after an acute crisis, their journeys were shaped by the social conditions that contribute to their distress and ill-health in the first place. For example, the working conditions in the UK Chinese catering business, such as long working hours and bullying culture, were considered by the research participants as the reasons contributing to their mental ill-health. Yet, those who did not speak fluent English could only go back to this sector. Some developed strategies to ‘hide’ their fluctuating symptoms, such as avoiding interaction with colleagues, so that they would not find out their mental health problems. Those who could speak fluent English might try to find jobs in the mainstream market. Yet, they reported that racial discrimination and mental health discrimination means it was difficult for them to find a job. Or if they managed to find one, they found it hard to keep the job.
Stubbornly striving to be human
Like my friend in Hong Kong, my research participants in the UK tried hard to persevere. In the face of structural barriers, they stubbornly strived to be human: They did not just strive to recover daily functioning in the traditional sense of ‘rehabilitation’, but to steer towards a life they want to pursue. Despite these, the dispiriting battle against structural barriers and diminishing life chances meant that some participants dared not to hope to prevent disappointment. Instead of asking service users to think ‘positively’, I argue that we should put social justice at the heart of the mental health recovery agenda. It is only through tackling the multilevel inequalities that they can enjoy real life chances to rebuild a life they value.
What would a social justice approach entail and how can we achieve this? In terms of research, research on service users’ lived experience and experiential knowledge can help us understand the myriad ways inequalities impact on different groups in different cultural contexts. Through this, we can identify social determinants that contribute to mental ill-health and hinder recovery as well as develop agendas for change set by communities at the local level. In terms of policy, one possibility is to use the United Nation’s Convention on the Rights of Persons with Disabilities (both Hong Kong and the UK have signed and ratified the convention) to evaluate and review the current legislation and policy practices. In Hong Kong, for example, we should have discussions concerning Mental Health Ordinance on removing coercive practices in the mental health system, recognising the informed consent of service users and developing independent mental health advocate services to secure the rights of the service users. Reasonable accommodation in workplace and education should be included in the Disability Discrimination Ordinance.