Psychiatric institutionalization, femininity, and women’s care giving in Poland

by Agnieszka Doll

Mental illness is often associated with notions of irrationality, unpredictability, and the imaginary threat of violence or possible negligence. For women who have been institutionalized in psychiatric hospitals, the stigma placed upon them takes on a polymorphous status as “mad” and “bad,” directly interfering with normative regimes of femininity. Particularly in societies like Poland with a traditional patriarchal gender order, these women may be seen as “unfit” mothers and “troublesome” wives, disruptive to the “normal” functioning of their families. The cultural script of Polish women as mothers and the primary care-givers cuts across class, profession, and place (Czerwinska, A., Lapniewska, Z., and Piotrowska, J., 2010) .Yet, for women with histories of psychiatric hospitalization, those care giving roles are denied. The Polish Public Opinion Research Center (CBOS) in 2008 and 2012 conducted surveys which show constant agreement among respondents that women with mental illness and previous hospitalization – regardless of the details of their individual prognoses – should be excluded from care taking duties for minors. This impacts both their private and professional lives as, for example, they may be denied employment as nannies or teachers. Even though the survey did not ask whether respondents perceived previously hospitalized women to be “fit” mothers, it illuminated the extent to which stigma of mental illness and institutionalization bears on women’s ability to fulfil societally assigned gender roles. Given that, women with histories of psychiatric hospitalization may experience difficulties in winning custody of their children in family law cases, for instance. When they manage to gain or uphold custody in such cases, to resist future hospitalization and to uphold their care-giving responsibilities they may need to drastically change their daily lives in an attempt to provide “proof” of their sanity (interpreted as orthodox compliance with gender norms) to state agencies, professionals or broader society. Thus, psychiatric examination and classification, particularly when imposed on women who are committed unwillingly, can function as a form of societal and institutional surveillance.

In spite of these serious implications, the process of admission to psychiatric facilities remains under-analysed. Current scholarship generally revolves around the need to find a balance between respect for personal liberties and the state’s right to protect the public from “dangerous” and “mentally ill” individuals. As well, it focuses on the negotiation of treatment needs and legal standards of due process within the context of admission. My doctoral research, designed as an institutional ethnographic study (D. Smith, 2006), aims to explore the procedure of involuntary psychiatric institutionalization of women in Poland, particularly its social organization. This is to gain a broader understanding of how knowledge about women as “pathological” subjects is produced within the process of psychiatric admission, and how this knowledge production occurring in local sites is organized and coordinated by ideological discourses, texts, and the features of organizational contexts. One of the project’s aims is to disrupt the mega-narrative of the official and “authoritative” accounts of psychiatric and legal professionals produced in involuntary admission processes that silence women’s voices and experiences. It is hoped that by illuminating how accounts of “pathological” women are produced within everyday institutional practices the notion of institutionalized women as “mad” and “bad” would be problematized.

References:

Czerwinska, A., Lapniewska, Z., & Piotrowska, J. (2010). Kobiety na “zielonej wyspie”: Kryzys w Polsce z perspektywy gender. Warszawa: Fundacja Feminoteka.

Omyla-Rudzka, M. (2012). Stosunek do chorych psychicznie. Warszawa: Fundacja Centrum Badania Opinii Spolecznej.

Smith, D. (2006). Institutional ethnography as practice. Lanham, Md.: Rowman &n Littlefield.

Wciorka, B., & Wciorka, J. (2008). Osoby chore psychicznie w spolecznstwie: Komunikat z badan. Warszawa: Fundacja Centrum Badania Opinii Spolecznej.

Agnieszka Doll is a PhD Candidate at the Faculty of Law, University of Victoria in Canada. Currently she is a Visiting Doctoral Fellow at the Bielefeld Graduate School in History and Sociology, University of Bielefled in Germany.

‘Confessions of a Closeted Cared-for’ by Sorcha Uí Chonnachtaigh

I recently decided that it is time to come out of the cared-for closet – to borrow a problematic euphemism – for a number of reasons: to make life easier but also because I recognise the importance of using any privilege one has to dispel misconceptions and to normalise stigmatised illnesses. Cue the ripping of the bandaid: I live with Major Depression and Chronic Fatigue Syndrome (CFS)

The former has much stigma attached and the latter, being a condition, like many syndromes, with disputed causation, diagnosis and treatment, has even more. I’m one of the luckier ones, living with relatively mild levels of fatigue, sleep difficulties, muscular and joint pain, headaches and cognitive difficulties (concentration and memory, in particular). I can work if I place serious limits on my social and personal life. Until now, few people were aware of my condition and, to avoid looking like an uncaring friend, disinterested/unsupportive colleague etc, I often sacrificed personal projects entirely to engage in some social activities.

Sacrificing my personal life doesn’t make things easy for my partner. In order to meet the demands of a full time job, I sometimes have to work from home (read: bed) and limit “unnecessary” activities (read: washing, dressing, cooking, grocery shopping). Bouts of infections and busy times at work can result in an exacerbation of symptoms and there have been times when fatigue and pain were sufficiently disabling that my partner has had to bring food and water to me. I am fortunate to have a partner who has no problem doing an unfair share of housework while supporting and caring for me, physically and emotionally.

I am familiar with the academic literature on care; I believe that revaluing care is vital to the feminist project of (gender) equality (Baker et al 2004). I have found the critical conceptual work on ‘care’ and ‘dependence’ (Fine & Glendinning 2005) convincing on an intellectual level. Still, I struggle to accept care and the impact it has on my personal relationship. As you can probably imagine, doing the ‘dirty work’ (Twigg 2000) of caring, and being cared for on an intimate yet functionally-dependent level, makes for super sexy times!

Our partnership is materially affected by the caring role my partner takes on too – he often keeps his worries and problems to himself, protecting me from what he sees as “extra” anxiety and worry. This could be viewed as paternalism or legitimate self-interest in my well-being. However, the space to care about is particularly important when the ability to care for is limited.

The literature challenges the presumption that relationships of care are unequal but there is, personally speaking, an experiential distinction between a relationship of care and relationships of love, sex and friendship. Perhaps it is a matter of renegotiation, but I have a persistent sense of discomfort about the division of labour, the limitations my care needs place on my partner, and the capacity to be considered the locus of desire as well as the object of care work.

Sorcha Uí Chonnachtaigh, School of Law, Keele University, s.ui.chonnachtaigh@keele.ac.uk

References

Baker, J, Lynch, K, Cantillon, S & J Walsh (2004) Equality: From Theory to Action. Palgrave Macmillan, 220-228.

Fine, M & Glendinning, C (2005) Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’. Ageing and Society 25:601-621.

Nussbaum, M (1995) Human Capabilities, Female Human Beings. In MC Nussbaum & J Glover (eds.) Women, Culture, and Development: A Study of Human Capabilities. WIDER Studies in Development Economics. Oxford: Clarendon Press; New York: Oxford University Press, 61-104.

Twigg, Julia (2000) Carework as a form of bodywork. Ageing and Society 20(4): 389-411.

Why Isabel Menzies Lyth is More Important than Ever

As covered in my previous blog for Revaluing care OXPIP provide parent-infant therapy to people with babies from conception to age two. So why am I writing a blog which features someone who is famous for trying to understand the internal dynamics of hospitals and nursing? Isabel Menzies Lyth helped found the Tavistock Clinic but was most famous for her paper, ’Social Systems as a Defence Against Anxiety”. The paper studied trainee nurses and gave rise to concerns about how many nurses were failing to complete their training. She came to the belief that organisations working with trauma and illness developed defences to prevent front-line staff becoming overwhelmed by the distress and suffering they were experiencing on a day-to-day basis. I want to explain why I believe her thinking is still highly relevant to the provision of care and our work in Children’s Centres.

I will start with a bit more context about OXPIP and how we work.  We are one of the pioneers of parent-infant psychotherapy. We have been working in Oxfordshire for the last fifteen years looking at how to support the development of more positive early relationships between parents and their babies. Founded by Sue Gerhardt and others, and building on emerging knowledge about early brain development we now work with 300 families a year and consistently see improvements in maternal mental health and the quality of the parent-infant relationship.

What distinguishes the work of our therapists, aside from their considerable expertise and knowledge, is their focus on the relationship as the subject of therapy. Improving the relationship between a mother and her baby has benefits for both sides on every front from mental and physical health and wellbeing through to reduced criminality and better academic attainment later in life.

So, aside from being heavily influenced by Bowlby’s theories of attachment, how is Isabel’s work to better understand ‘institutional anxiety’ relevant to our work with parents and infants? The answer is that while our therapeutic work with parents and their babies is at the heart of what we do, there is a great deal around that which is also of value. We know from countless enquiries following tragic deaths that communication between professionals is critical to identify and respond to abuse and neglect. We also know, although it gets less prominence, that there is a natural human tendency not to think about horrific or unthinkable acts which are close to us, to not see that which should be apparent or not to act when rationally it is clear we should.

It is only through giving front line staff the time and space to think through the issues they are faced with that we can reasonably expect them to respond sensitively and appropriately. It is only by developing people’s understanding of human relationships and how to respond supportively to distress or dysfunction that we can hope to reduce the number of such tragedies.

Children’s Centres vary hugely and they include some highly skilled and experienced staff, but the jobs are often poorly paid and under-supported. We offer both formal supervision and informal consultation to staff in children’s centres which helps them to contain and understand the challenging emotions and behaviours they can be presented with on a daily basis.

For two years after leaving university I worked in front line care roles: an older people’s care home and a geriatric hospital. I have seen, and fought to resist, the institutional apathy and indifference which can so easily come to inhabit such places. Poorly paid staff, too many demands on their time, and little support from management will inevitably lead to people becoming numb and ignoring of the people in their care. I fought to resist it but for me it was a short-term job. Had I had to fulfil such a role for a living, for life, I would have struggled to retain my humanity and compassion for the people in my care.

It is this emotional exhaustion that leads to detachment and organisational anxiety. It is the need to acknowledge and address anxiety, despair and depersonalisation that makes the work of Isabel Menzies Lyth important. How do we ensure the health of the organisations that provide the care in our society? How do we care for the carers? How do we prevent organisations from sinking into malaise?

OXPIP: The Oxford Parent Infant Project
Suite J
High Street
The Kidlington Centre
Kidlington
OX5 2DL
T: 01865 371080 or 01865 778034
info@oxpip.org.uk
www.oxpip.org.uk

N.B. This blog is adapted from the introduction I gave for Jeremy Holmes when he gave the inaugural Isabel Menzies Lyth Lecture ‘Malaise in the NHS’ for OXPIP on 22 October 2013. For more information do drop me a line.

Care in the first two years of life: OXPIP and the emerging discipline of parent-infant psychotherapy

By Adrian Sell, Executive Director, OXPIP: The Oxford Parent Infant Project

OXPIP is one of the organisations pioneering parent-infant psychotherapy. Founded in 1998 we have been working in Oxfordshire to provide support to parents who are struggling to form a secure attachment to their baby. In the last three years we have worked with over 900 families and consistently improved mental health and the quality of the parent-infant relationship[1]. We work with babies up to the age of two and their parents, normally the mother but we have worked with many fathers as well.

Parent-infant psychotherapy is distinguished by the attention it brings to the mother’s mental health, the baby’s mental health and, crucially, to the quality of the relationship between parent and baby. This focus on the quality of the care that comes from this early experience is critical to our success in addressing intergenerational cycles of disadvantage. We all have a tendency to default to parenting our children as we were parented, even if those relationships were withdrawn, unpredictable or harmful.

Our clinicians are skilled at enabling parents to build and sustain closer relationships with their children. One of the therapeutic tools for achieving this is through modelling thoughtful, empathic ways of relating within the therapeutic relationship. For some of the parents we work with this is the first time they have really experienced being thought about and related to in this way; it can be a powerful tool for change, opening up new possibilities for how they in turn can relate to their babies.

Our team of psychotherapists come from a range of backgrounds including Child Psychotherapy, Adult Psychotherapy and Clinical Psychology as well as including prior qualifications in Health Visiting, Nursing, Midwifery, Social Work and Teaching. All have undergone Infant Observation training, and are trained in the use of video through the (NICE approved) Video Interaction Guidance approach. This mix of backgrounds and approaches gives our work a strength and rigour that forces us to constantly challenge our own preconceptions and viewpoints.

We are part of a growing national movement of people and organisations who are bringing greater focus to the first years of life. Our Executive Director, Adrian Sell is a trustee of PIP-UK a new national charity seeking to support similar services to develop elsewhere. We have backing from Impetus – The Private Equity Foundation where we are one of twenty-five organisations they see as critical social game-changers supporting disadvantaged children to develop to their full potential. We are a member of the Centre for Social Justice Alliance where we are recognised for our effectiveness in tackling the root causes of poverty and disadvantage. We are supporters of the All Party Parliamentary Group for Conception to Age 2 – the first 1001 days

We all instinctively know that the first few years of our life are formative. There is also considerable neuroscientific evidence that has emerged to support this. OXPIP are now at the forefront of developing an evidence base for the positive impact that parent-infant psychotherapy can have. If you want to find out more then please look at our website, get in touch or leave a comment below.

OXPIP: The Oxford Parent Infant Project
Suite J
The Kidlington Centre
Kidlington
OX5 2DL
T: 01865 371080 or 01865 778034
info@oxpip.org.uk
www.oxpip.org.uk

 

Trans Mental Health, Transition and Gender Identity Clinics – By Dr Louis Bailey

The Trans Mental Health Study 2012)[1] is the largest survey of its kind within Europe and the first to explore mental health and well-being within the UK trans population.  The survey examined rates of life and body satisfaction within the trans population as well as trans people’s experiences of accessing a range of health and support services (including gender identity services and mental health services), current and past mental health issues, and experiences of daily life.  The full report can be found here.

Impact of Transition on Mental Health

The key finding to emerge from this study was the significance of gender transition in improving mental health and well-being.  74% of the respondents felt that their mental health had improved since transitioning.  85% were more satisfied with their bodies since undertaking hormone therapy, 87% were more satisfied after non-genital surgery and 90% after genital surgery.  Both social and physical changes of gender were shown to have a substantially positive impact on trans people’s self-esteem, happiness and quality of life.  Crucial here was the importance of being able to socially transition as their felt gender identity and having that identity recognised by others.  Alongside and interacting with this was the positive role played by hormonal and surgical interventions, which enabled necessary physical and psychosocial changes to be made.  Such changes reduced instances of Gender Dysphoria and negative body image and, in turn, served to increase confidence, satisfaction and overall well-being.

Rates of self-harming, suicidal thoughts and suicide attempts were high with 53% of respondents having self-harmed, 84% thinking about suicide and 35% attempting suicide at some point over the life course.  However, gender transition was shown to drastically reduce rates of self-harm and suicidal ideation within this group.  Of those that had completed transition, 63% reported having self-harmed, thought about or attempted suicide more prior to transition compared with 3% after transition.   Whilst transition has been shown to significantly reduce rates of self-harm and suicidal ideation, it consequently follows that those who would like to transition but who are unable to or who are experiencing significant delays or set-backs within the healthcare system will be at risk of increased self-harm and suicidal behaviour.

Impact of NHS Gender Identity Services on Mental Health

Whilst treatment for Gender Dysphoria was shown to have a beneficial impact on mental health, the process endured by respondents in order to gain access to that treatment was decidedly negative.  20% of respondents had wanted to harm themselves in relation to, or because of involvement with a NHS Gender Identity Clinic or health service.  The reasons listed included: Long waiting times and delays to treatment, restrictive protocols, inaccurate and unnecessary assessments, being denied treatment, being given the wrong information or advice, receiving negative or inappropriate treatment from psychiatrists, experiencing outmoded attitudes or questions/tests:

  • ‘…some things said to me at my last appointment (specifically that I should accept that my wife and daughters would be better off if I left them) upset me greatly. I left the Gender Identity Clinic on that day and sat in the car crying for over an hour. I decided there and then never to go back.’
  • ‘The Gender Identity Clinic…seemed to have very rigid ideas of masculinity and femininity and seemed to be adhering to a now outmoded medical model…with one my assessors asking me about sex positions, and how this ‘differed from heterosexual sex”‘
  • ‘The GIC expected me to be some stereotypical image of a woman rather than being myself’
  • ‘I experience the NHS GIC service as largely a paternalistic gatekeeping exercise where psychiatrists exercise inappropriate levels of control over the lives and choices of patients. They ensure compliance by withholding or threatening to withhold access to treatment… Having to negotiate the GIC system seriously hindered my transition. At many times, it has left me feeling angry, disappointed, manipulated, controlled and despairing. The system is deeply flawed.’

Summary of Findings

 Protective Factors:

-          Timely access to hormones and surgery

-          Social recognition of their gender

-          Professional understanding and support

 Risk Factors:

-          Untreated Gender Dysphoria (delays, refusals)

-          Minority stress (discrimination, harassment)

-          Unnecessary and intrusive questioning/tests

-          Prejudicial attitudes from service providers

-          Restrictive treatment pathways

Key Recommendations

Exploration of Alternative Health Care Models

There should be a shift towards models of trans healthcare incorporating informed consent and patient flexibility. This could be within the context of Gender Identity Clinics, however there are substantial issues within this system as it currently stands in terms of patient experience and outcomes. Many other models of trans healthcare are used globally and should be explored as alternatives. For example, the THInC model from Chicago (Trans Hormones Informed Consent) has very positive outcomes with the communities being fully engaged and involved in decisions around their healthcare. Informed Consent models are easily adapted to the UK health system (for example the T-PIC model; Traverse Research). These alternatives should be developed and researched to provide a valuable resource for informing true evidence-based practice focussed on enhancing outcomes, and in the process reducing costs.

 

 



[1] The Trans Mental Health Study 2012 – Jay McNeil, Louis Bailey, Sonja Ellis, James Morton and Maeve Regan (Equality Network; September 2012).

Publication of the Irish Assisted Decision-Making (Capacity) Bill – Implications for Carers

At long last, on Wednesday 17 July, after many years and countless delays, the Bill to put in place a modern legal framework for people with impaired capacity in Ireland was published.  When enacted, the Assisted Decision-Making (Capacity) Bill will replace the Lunacy Regulation (Ireland) Act 1871 (so the need for modern legislation can hardly be overstated).  It is also intended that the new legislation will pave the way for Ireland to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which it has signed but could not ratify because the Lunacy Regulation (Ireland) Act was so evidently in breach of Art. 12 of the CRPD.  Whether the proposed Bill will actually be CRPD compliant remains open to debate (see one argument that it is not posted on Human Rights in Ireland blog) as indeed is the question of what exactly the CRPD requires in dealing with people with decision-making difficulties because of capacity impairment.

The legislation has been influenced by some Canadian legislative models and some of the ideas from Bach and Kerzner’s thought-provoking paper for the Law Commission of Ontario are also evident. The Bill introduces some important new concepts.  Among the most striking are the concept of a decision-assistance and co-decision making.  Both of these concepts try to address the requirement in Art.  12 (3) of the CRPD that ‘States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.’ Both concepts require the involvement of another person (a ‘decision-making assistant’ or a ‘co-decision-maker’ ) and it is clear that in many cases, the most likely person to fulfill the role will be a carer or family member. The assistant/co-decision-maker may be appointed by the person him or herself or by the court.

Looking at the Bill from a carer’s perspective, a couple of preliminary points emerge.  First, the functions of the decision-making assistant/co-decision-maker are extensive (s. 11 for decision-making assistant and s. 21 for co-decision-makers). Carers will be required to take on a legal role which, inevitably some will be more suited to than others.  In performing this role, carers will be subject to the supervision of the office of the Public Guardian and may have to make reports and be visited by a ‘special visitor’  (s. 59(1)).  The Public Guardian may also receive complaints about the way an assistant/co-decision maker is performing his or her functions and act on these complaints, including making an application to the High Court (although it is not exactly clear from the Bill  what the nature of this application will be- presumably it is to remove the person from the role).  It is clear though that formal oversight is going to be part of the process and carers are going to be the subject of this.  While, clearly, oversight is needed, a careful balance has to be struck between effective and appropriate protection of vulnerable people and ensuring that carers’ already difficult roles are not made unnecessarily more difficult.  It would also help to have some kind of support for carers in carrying out their legal role – the potential, for example, to involve an advocate where the legal task to be performed gets too complex or difficult.   Unfortunately, as currently presented, there is very little indication of support mechanisms for carers/family members in the Bill.

A second important provision from a carer’s perspective is s.53 which allows for a ‘informal decision-maker’ to make decisions in respect of ‘personal welfare’  (including healthcare and treatment).  Again this is most likely to be a carer.  As with s.5 of the Mental Capacity Act 2005, an informal decision-maker does not incur legal liability in respect o the decision which s/he would not have incurred if the person had capacity to consent and if s/he had consented to the decision.  This however is provided that the informal decision maker acts in accordance with the provisions of the Act – although no better indication than this is given. This is a dense and complex piece of legislation and this kind of imprecision is hardly helpful for carers operating on the ground.  The matter may of course be addressed in guidance and/or a Code of Practice – but as presently presented, a great deal more clarity is needed.

This is an important and very welcome Bill –  it is trying to achieve a difficult task – made all the more challenging by the context of austerity in which the legislation is going to be introduced.   The kinds of advocacy/educative frameworks which need to underpin this kind of legislation are unlikely to be funded in the near future.  Bearing this in mind, though, it is still important to engage with the framework presented to ensure that it serves its purpose in the best way achievable and this includes recognising the perspectives of carers.