Lost Voices, lost stories
Maitreyi Misra is a Research Officer with the United Nations Special Rapporteur on the right to health. She read her LL.M. at New York University School of Law and graduated in 2011
My name is Maitreyi and I have depression.
This is the first time I’m disclosing my identity in a public forum as a person with mental illness. Ironically, I am also a staunch advocate of being open about one’s mental illness. When I was first diagnosed with depression and anxiety I didn’t want to acknowledge it and I certainly didn’t want anyone to know -- not even my family. I had seen enough of how people with mental illness were treated in the general social environment around me. They are supposed to be scary, mad, insane and a danger to other people. Theyneed to be locked away.
I didn’t want people to think I wasn’t normal. I didn’t want to be a burden on my family and friends and thought that maybe it was better to hide my illness and pretend there was nothing wrong with me. I felt alone, scared and doomed. I had stigmatized myself before anyone else and so I shut myself to the outside world. My loneliness fed into the depression and the depression, in turn, fed into my loneliness.
I did eventually tell my mother (my father and other members of my family didn’t know for the longest time) and a few people at work -- mostly because I had to. I am one of the few lucky ones who were not shunned. But people started treating me differently. They started being overly nice to me. People would tip-toe around me so as to not set me off. Some saw me as a delicate thing that should be treated with unusual care and some saw me as a ticking bomb ready to explode at any moment. I felt alienated and stigmatized. I was treated with care -- and pity. I am sure a lot of them meant well for me. They even told me to snap out of it.
I remember telling a colleague, “Don’t be afraid of me, I won’t harm you, but I do need to drink a lot more water these days.” I was joking, but it made her even more uncomfortable. She pretended not to have heard me. The trouble is that no one knows how to treat a person with mental illness. Do you laugh when they joke, or smile politely? Can you crack jokes; can you still fight and argue with them? Most of all, can you be yourself around them? This lack of information and awareness contributes to an increased stigmatization of persons with mental illness. It also results in unfortunate embarrassing and uncomfortable conversations between well-meaning individuals and persons with mental illness.
There’s a lot of misinformation about mental illnesses that go unchallenged. True stories of persons with mental illness by persons with mental illness need to be told. Unfortunately, persons with mental illness have been demonized, hidden, and abandoned. Laws have perpetuated the stigma and prejudice by institutionalizing persons with mental illness at the first instance. Of course, now it’s called ‘voluntary and involuntary admission’. It’s a pretty phrase hiding the truth of stigma, and a dreaded phrase for those who have a mental illness. Persons with mental illness do not have voting rights due to ‘unsoundness’ of mind. ‘Unsoundness’ of mind is also apparently valid ground for seeking divorce. Inheritance laws are stacked against persons with mental illness. Persons with mental illness are presumed to not have capacity to provide consent to -- or refuse -- treatment. Even mothers with mental illness are separated from their children.
Persons with mental illness are looked at as bodies without being. Our mental illness becomes the only facet which defines and characterizes us. It is unfathomable for others that our mental illness is just one part of who we are. But we are more than our mental illness. We have, like everyone else does, a story to tell -- only no one listens and so we become quiet spectators in that corner where no one looks.
Society needs to wake up to the very simple truth that we exist and we must be the ones to look society in the eye and tell them we are very much alive.
With China Mills, Researcher, Oxford Poverty and Human Development
|China Mills is a Researcher at OPHI (Oxford Poverty and Human Development Initiative), working on Social Isolation as part of the Missing Dimensions programme. She completed her PhD in ‘Globalising Disorders: Encounters with Psychiatry in India’ at Manchester Metropolitan University, conducting fieldwork in India for six months. She has carried out extensive research on the social determinants of mental health globally, published widely, and has been a visiting lecturer at a number of universities. She has also been a vocal critic of the Movement for Global Mental Health (MGMH) for some years now. In an interview with Jagannath Lamichhane, the Principal Coordinator of the MGMH, China Mills fleshes out and shares her ideas and critical voice of dissent regarding the Movement and the future of mental health. Read the full interview below:|
(Any comments and counter-response on this interview are welcomed.)
JL: Since the inception of the MGMH in 2008, you have been at the forefront in criticizing the Movement as a 'neocolonial project to globalize western psychiatry'. You have recently even published a book titled "decolonizing global mental health". What is the basic rationale of your argument and belief?
CM: With a number of people in my family diagnosed with schizophrenia, and having myself taken anti-depressants, I will never forget when I first learned about the harm that many psychotropic medications can cause. I couldn’t believe - in fact I couldn’t bear to believe - the lack of evidence surrounding the supposed biological causes of much emotional distress and the sometimes fatal implications of taking many medications. I had seen first-hand how psychiatry could disempower people by labelling them and telling them they are incompetent, by treating them against their will, and by institutionalising them. Perhaps this is partly why I became a researcher, so that I could learn more about these issues that so often remain hidden, and could try to make public some of the reasons why they remain hidden.
Confronted with such a wealth of evidence, I had to start believing that psychiatry’s medications could be harmful. And then, while doing research in India, I learnt about the Movement for Global Health (MGMH) and I became concerned. There seemed to me to be a strange irony in the fact that as psychiatry and its treatments are coming under increasingly harsh criticism within high-income countries (HICs), both from psychiatrists themselves and those who identify as psychiatric users and survivors, there are simultaneous calls, from the MGMH, to ‘scale up’ this same psychiatry globally. Both the push to scale up psychiatry in low and middle-income countries (LAMICs) and to scale it down in HICs, are made through appealing to human rights. Thus, while the MGMH rightly pushes the right to health, it seems to overlook people’s right to self-determination and their right to refuse treatment.
What concerns me about this is that while I agree that there are people all over the world who experience differing levels of distress, and live in conditions of persistent poverty and stark inequality, I am unsure about how helpful it is to understand this distress as ‘mental disorder’. How we understand something shapes what we do about it. If we understand distress, that may well be due to harsh living conditions, as being caused by something inside people’s brains, then we are likely to intervene at the level of the individual, and not at a wider systemic level. Scaling up mental health care based on psychiatry is even more problematic when we consider that a number of studies (including by the WHO itself) have shown better outcomes for people who experience emotional distress in some LAMICs where psychiatric facilities are very limited.
My book (based on my PhD research) argues that issues of power are central to any discussion of GMH. This ranges from questions about who has the power to label, diagnose and prescribe; to thinking about who has the power to define what counts as evidence, and to set the agenda for a global movement. It also asks other questions about GMH. For example, why in GMH literature is there very little mention of the harmfulness of many psychiatric drugs, or of the fact that little is known about how these drugs work? What role does the pharmaceutical industry play within GMH, and even if this is unintentional, what are the ethics of aiding the pharmaceutical industry to establish new and profitable markets in LAMICs? Why doesn’t the MGMH engage in transparent discussion about the wider political economy of scaling up?
The book is rooted in some of these dilemmas. It maps some of the areas of tension within, and potentially deleterious unintended consequences of, scaling up models of mental health care that are dominated by psychiatry. In the book, I try to trace how the current move to scale up psychiatry has similarities to the use of psychiatry as a colonial tool during formal colonialism in India. This is helpful because it makes it possible to see how colonialism comes from the outside yet can be continued from within, and it makes visible forms of resistance – to colonialism and to psychiatry. A project of decolonization would mean revealing and dismantling forms of colonial power, including those that operate through psychiatry – using local and indigenous tools, as well as new and creative alliances between diverse groups. I believe this is already starting to happen with some user/survivor groups speaking back to the MGMH and the WHO (for example, in the work of PANUSP and Bapu Trust).
JL: In developing countries, mental health services are usually exempt from health and social care services. There are hundred thousands of people with severe mental health problems being chained and treated inhumanly in traditional healing centres, mental hospitals, homes and in their communities. There is also a deep silence among human rights groups, civil society NGOs and the general public about the routine human rights violations of affected community who are being denied basic health care services and human needs. In this context, the MGMH was started to break the silence on injustice. In the last six years, the MGMH has developed as a global platform to discuss a range of mental health issues which would have otherwise gone unnoticed. How do you interpret the role of the MGMH in bringing to light such issues?
CM: I agree that huge numbers of people are being treated inhumanely (and would say this doesn’t just happen in developing countries). However, whether these people have ‘severe mental health problems’ is a central question that needs examining. I have seen with members of my own family that one of the effects of being labelled as having ‘severe’ mental health problems, is that such people are then sometimes treated severely by those trying to help them.
If the MGMH is bringing to light experiences of distress as ‘severe’ mental disorder, then I think it is playing a harmful role. To label people as severely ill can work to deny the possibility of recovery and has been shown to increase stigma. In fact, there is much evidence to show that explanations of distress as being biochemical, and within people’s brains, while reducing blame, actually increase stigma, desire for social distance and punitive treatment from the public. Such explanations lead others to see distressed people as ‘less than human’ and therefore are likely to increase human rights violations – something that does not seem to be true for explanations that emphasise the role of trauma or distress due to difficult circumstances. It would seem then that in promoting understandings of distress as having a physical basis in the brain, and as being ‘severe’, the MGMH may actually globalise the stigmatisation of people in distress. This is of very grave concern for those who experience such stigma first-hand.
Furthermore, there may be a ‘silence’ (although many user/survivor groups are working globally to break this) around inhumane treatment because some of these acts are constructed as psychiatric ‘treatment’, preventing them from being seen as violent. It is partly because of this that a number of user/survivor groups (for example, Bapu Trust in India, and PANUSP in South Africa) are keen to understand distress not as a health issue (which often leads to medicalization) but as a social justice issue.
The MGMH is a very successful global platform. Yet my concern is that it is a platform that discusses and brings to light a range of issues as if they are mental health problems, when I would argue there might be more useful ways of understanding and intervening (for example, taking seriously conditions of poverty and social inequality).
JL: Despite vocal criticism of the MGMH, you have also expressed realization about the need for a strong civil society movement to transform the lives of people living with mental health issues in developing countries. What kind of movement are you referring to and how would it be different from how you perceive the MGMH currently? Is there a scope to modify the MGMH to incorporate your perspective?
CM: The movement I refer to, and hope to see grow, is already beginning, and so I can tell you partly what it consists of and not just what I would imagine it could be. The ethos of this kind of work is beautifully summarised in PANUSP’s Cape Town Declaration of 2011. Here it is very clear that many users and survivors are pushing for politicised understandings of distress, as linked to, for example, socio-economic inequalities, and not frameworks that see this as ‘illness’ within people’s brains. They state that that all people should have the right to access non-medical and non- western healing spaces, should have a choice between viable alternatives, and this should include the right to refuse treatment.
Already groups within the global South are increasingly connecting with each other, through south-south partnerships that aim to speak back to and question global initiatives such as the MGMH and the WHO. Such alliances can enable issues to remain embedded in their local contexts, but can allow transnational sharing on more equal and reciprocal terms than available currently. How these groups could connect to other forms of transnational advocacy, for example, around fairer global trade or environmental issues, remains an exciting development to be seen.
I enormously appreciate being asked to contribute to this newsletter, and feel that such dialogue is a good thing. However, I remain very unsure about whether the MGMH can ‘incorporate’ my, or many user/survivor, and critical psychiatry, perspectives. For me, this is because, while I agree with the sentiment of the MGMH, I disagree with some very basic assumptions within it. For example, while many people globally may experience distress, I do not think it is helpful to understand this distress as an underlying pathology. I do not think there is a ‘treatment gap’ as much as massive inequality, which I would argue itself leads to distress. And I find it deeply ethically questionable to call to scale up access to medications that have been found to be at best ineffective and at worst extremely harmful.
JL: Better and quality health care services are the backbone for everyone to live a quality life and fall under the mandate of fundamental human rights and constitutional rights for every individual. But in the developing world, there exists a huge treatment gap where up to 90 percent of the people with mental health problems have no access to treatment. Do you think that attempting to bridge this treatment gap may bring unintended negative consequences in developing countries and, if so, how?
CM: The right to healthcare is a fundamental human right, yet so is the right to self-determination, to bodily integrity, and thus the right to refuse any interventions that a person feels violates these rights. Perhaps even before healthcare, the backbone to living a life one values is to be free from poverty and conditions of inequality. These are often the conditions that lead to ill health, and make quality healthcare harder to achieve. While we may agree on the right to health and wellbeing, we may disagree on how this is achieved, and on what models this should be based, and perhaps particularly if a standard global norm is appropriate, or if plural approaches are more desirable.
In fact, it is the ‘global’ of the MGMH that I struggle with the most. Because the transposition of psychiatric diagnostic categories is so problematic globally (in fact, they are deeply contested even within the countries from which they come), this makes epidemiological studies into prevalence extremely problematic. My concern is that by pushing mental health as a global priority, the MGMH may divert attention from other major issues, such as poverty and inequality.
This also makes assumptions of a ‘treatment gap’ problematic, and particularly so when some research (for example, see the work of Stefan Ecks) has shown that in parts of India, anti-depressants are so widely available that over-use may be more of a problem than under access. Furthermore, saying that 90% of people have no access to treatment, assumes that psychiatry is the only ‘treatment’ for distress, overlooking local and traditional healing practices. This also carries the assumption that the populations of LAMICs are ‘lacking’ in knowledge about distress – when in fact they may well have much to teach HICs. Bearing this in mind, I do worry that bridging this ‘gap’ might have many harmful consequences – not least through devaluing, and ‘weeding out’, alternative forms of healing, as well as potentially increasing reliance on psychiatric expertise, and on medications, over more informal, community or traditional expertise, or expertise by experience.
JL: There is no doubt that there is a public mental health crisis in developing countries. How could we address the crisis in the best interest of developing countries and their populations?
CM: Would you mind if we just pause for a minute. The words ‘crisis’ and ‘best interests’ are problematic concepts, and if we think about them carefully, we may realise that there is indeed ‘doubt’ about a ‘public mental health crisis’ in ‘developing countries’, and particularly about the implications of acting as if there is a ‘crisis’. The concept of ‘crisis’ or ‘emergency’ is often invoked within psychiatry to justify forms of treatment in a person’s ‘best interests’ - which can mean against their will - because they are assumed to be temporarily incompetent and irrational. Calling something a ‘crisis’ can therefore be a way to justify forced treatment under the guise of there being ‘no alternative’. In my own work in India, I found it interesting that the Indian Psychiatric Society justify the use of direct-ECT (ECT without anaesthetic) in a similar way to how some traditional healers justify the use of violence with people in distress, and in a similar way again to how to some NGOs justify medicating people against their will. They all do this through constructing those they work with as incompetent, dangerous, and by stating that they constitute an ‘emergency’, and that there is no alternative. This doesn’t only happen at an individual level –economic ‘shock’ therapy uses similar means to justify violent interventions at an international level.
Does this mean, then, that I think there are no crises or emergencies? No. But I think it’s important to think about what naming something as a ‘crisis’ does, and what interventions it allows. One of the areas I have been most concerned about within GMH literature is the responses put forward by some to address the tragedy of high numbers of farmer suicides in India. Here many farmers swallow pesticides because their lives have become unliveable due to economic reforms that have opened up the cotton market to the world market with little support to manage the transition, and the aggressive promotion of monocropping and pesticides that have degraded the land. In response to this, GMH literature (see Patel and Kleinman, 2003) acknowledges that such reforms essentially sanction the starvation of many farmers. Yet it goes onto suggest that a key course of action should be increased access for farmers to anti-depressants, and decreased access to pesticides. Similarly, the Indian Government has responded by sending out teams of psychologists to farming communities, and launching a study to examine genetic predisposition to suicide among farmers.
This diverts attention and scarce resources away from the issues that lead to distress in the first place, and it implies that the high numbers of suicides are the result of a ‘mental disorder’ treatable by medication, and not a desperate act due to economic reforms that benefit multinational companies and many HICs. This fails to fully acknowledge the role of the wider agrarian crisis in farmer suicides (for example, how volatile economic markets may lead to substance abuse or family conflict, which may then lead to suicide). Therefore, this is just one example of how one type of crisis - the agrarian crisis in India - is reconfigured as a ‘public mental health crisis’.
Recognising the unequal power relations within the idea of ‘best interests’ does not mean, however, that people in HICs should just leave people in LAMICs to suffer. It means recognising how lifestyles and practices of HICs are partly responsible for the stark inequality and suffering experienced by many people in LAMICs. It means increasing awareness of, and demanding that, multinational companies pay taxes and ensure safer and fairer working conditions, and calling for governments of HICs to cancel debt repayments that were ill-begotten in the first place. Therefore, the problem with focussing on distress as ‘mental disorder’ is that it makes it easier to overlook the socio-economic conditions that lead to that distress. Thus, many governments of HICs and large corporations may well be keen to understand widespread distress in LAMICs as ‘mental disorder’ treatable by drugs, because this diverts attention away from, and allows them to continue, practices of inequality that happen to be highly profitable.
If the words ‘crisis’ and ‘best interests’ sanction some people to act on others against their will, then we need to be very careful about how we use these concepts. The issue of consent is absolutely central here, and yet this issue seems markedly absent from much GMH literature. There seems to have been little engagement by the MGMH with psychiatric user/survivor literature, and the work of organisations such as the World Network of Users and Survivors of Psychiatry, where informed and supported decision making (for example, using advanced directives, peer support, and self-advocacy) form central aspects of intervention. This is one way in which the dominance of psychiatry seems evident within GMH. Informed decision making is also made difficult by the fact that GMH tends to overlook the evidence that exists on the harmfulness of many psychotropic medications. If people are not made aware of this harmfulness then they can’t make an informed decision about whether, for them in their particular contexts, the benefits might in the short-term outweigh the risks. Sometimes I may feel so distressed that small doses of medication might have an effect that I would find desirable in that context, and sometimes it may not. This should be my decision. And a decision implies a choice between real and viable alternatives. (The drug-centred model of psychiatric medication, and the work of Joanna Moncrieff, is very helpful here.
Please see www.criticalpsychiatry.co.uk/ andwww.mentalhealth.freeuk.com/article.htm for a wealth of resources).
A key problem then in HICs is lack of viable alternatives and choice, something which actually does exist in the pluralism of approaches to distress evident in some LAMICs, such as India. When we accept that people in distress are able to make decisions about their lives with some support, we can move away from acting upon people in what we have decided are their best interests. We can think more creatively with those people what consent and choice really mean and how to achieve them both at an individual and a community level.
JL: Finally, there are lots of problems with the mental health system in the West. Services are highly medicalized and institutionalized. Forced psychiatric treatment is a norm which is clearly against the UN Convention on the Rights of Persons with Disabilities. But people seem to be ignoring these issues. Why there an obsession with developing countries, and not any attention being paid to the human rights issues of developed countries?
CM: It is interesting you should ask this question, because for me this highlights one of my deepest concerns about the MGMH. I agree completely that psychiatric services in the global North are deeply problematic – something I know both from personal and professional experience. I disagree that people are ignoring these issues, and I have the privilege to know many people and organisations working tirelessly to expose and end the human rights abuses of psychiatry within HICs (for example see the work of Mental Disability Rights International (MDRI), and the European Network of Users and Survivors of Psychiatry (ENUSP)). However, I do think that the MGMH sometimes overlooks these issues, when it would benefit enormously from taking them seriously.
Institutionalisation is a huge problem in many HICs, but medicalization within the community is also of central concern. While people may not be institutionalised, they are often medicated against their will in community settings, with choice seeming to mean a decision over whether you would prefer your medication as a pill or an injection. Over prescription of psychotropic drugs, prescriptions of multiple drugs at once (poly pharmacy), and the prescription of harmful and addictive drugs to very young children - constitute just some of the problems that HICs face in their reliance on bio-psychiatry as a way of helping people in distress.
An issue at the heart of the abuses of psychiatry within the ‘West’ is the growing alliance between psychiatry and the pharmaceutical industry. In countries like the USA, pharmaceutical companies have been fined billions of dollars for promoting drugs for unapproved uses, including for use on children, and for manipulating research findings, and concealing harmful and unfavourable trial results. This is the tip of the iceberg in terms of the unethical practices of the pharmaceutical industry. Thus, when the issue of huge financial profits is introduced into the ‘treatment’ of distress – we need to show scepticism. This should be of particular concern for the MGMH and for LAMICs, because while the WHO conceives of ‘mental disorder’ as burden, many pharmaceutical industry publications speak of LAMICs as ‘untapped markets’ and ‘promised lands’ for drug markers. Perhaps the fact that ‘mental disorders’ prove to be a very profitable ‘problem’ for the second biggest industry in the world, explains the ‘obsession’ about mental distress in LAMICs that the question you have asked me alludes to.
The UNCRPD has been an immensely important tool for people who experience distress – bringing together people who identify as psychosocially disabled, or as users and survivors, together with the wider disabled people’s movement. This is a movement that has long resisted the medicalization of difference. With so little evidence for a biochemical component to most ‘mental disorders’, the push to move understandings of distress out of a medical framework, something called for by many user/survivor organisations, seems to make sense. Yet some advocates of GMH do not seem keen to do this. Vikram Patel’s support for the Mental Health Care Bill in India, for example, pushes for the medical model to be retained alongside the social model, resulting in a Bill that user/survivor organisations, such as the Bapu Trust in India, feel condones treating people without their consent because they are seen to be incompetent. Thus, framing distress as an ‘illness’ can trump the right to self-determination, and contradicts the progressive legislation within the UNCRPD.
Bearing all of this in mind, I want to ask, can we ethically push to scale up services, and the rationales that underlie these services, that we know have, in the ‘west’, proved harmful, difficult to monitor, and are open to abuse, globally?
Alumni Perspective: Creating a Network for Mental Health
A recent graduate of Wharton’s Executive MBA Program based in San Francisco, Sachin Chaudhry envisions improving mental healthcare globally with TrustCircle, a peer-centered mental health network.