Six questions for culture in the age of consumer health technologies: Public lecture

I am visiting the University of Auckland as an international speaker for the Research Café on Migration & Inequality being organised by the Faculty of Science and School of Population Health. The Research Café is a project of the Engaged Social Science Research Initiative and funded by the Vice-Chancellor’s Strategic Development Fund. I’ll also be giving a public lecture on Wednesday 7th December in Room 730-268 at the School of Population Health: 11.30am -12.20pm:

“Wearables” are a growing segment within a broader class of health technologies that can support healthcare providers, patients and their families as a means of supporting clinical decision-making, promoting health promoting behaviours and producing better health literacies on both sides of the healthcare professional-consumer relationship. Mobile technologies have the potential to reduce health disparities given the growing ubiquity of smartphones as information visualisation devices, particularly when combined with real-time connections with personal sensor data. However despite the optimism with which wearable health technology has been met with, the implementation of these tools is uneven and their efficacy in terms of real-world outcomes remains unclear. Wearables have the potential to reduce the cultural cognitive load associated with health management, by allowing health data collection and visualisation to occur outside the dominant languages of representation and customised to a user experience. However, typically, “wearables” have been marketed toward and designed for consumers who are “wealthy, worried and well”. How can these technologies meet the needs of culturally diverse communities?

This presentation reports on the findings from a seminar and stakeholder consultation organised by The Centre for Culture, Ethnicity and Health, in partnership with the University of Melbourne’s Research Unit in Public Cultures and the Better Health Channel. The consultation brought together clinicians, academics, developers, community organisations, and policymakers to discuss both the broader issues that wearable technologies present for culturally and linguistically diverse (CALD) communities, as well as the more specific problems health-tracking might pose for people from diverse backgrounds. This presentation summarises the key issues raised in this consultation and proposes future areas of research on wearable health technologies and culturally and linguistically diverse (CALD) communities.

Dr. Ruth De Souza is the Stream Leader, Research Policy & Evaluation at the Centre for Culture, Ethnicity & Health in Melbourne. Ruth has worked as a nurse, therapist, educator and researcher. Ruth’s participatory research with communities is shaped by critical, feminist, and postcolonial approaches. She has combined her academic career with governance and community involvement, talking and writing in popular and scholarly venues about mental health, maternal mental health, race, ethnicity, biculturalism, multiculturalism, settlement, refugee resettlement, and cultural safety.

Contact for Information: Dr Rachel Simon Kumar r.simon-kumar@auckland.ac.nz

 

 

Wearable devices and the potential for community health improvement

Written for and first published in in the August 2016 edition of Nurse Click  (the Australian College of Nursing’s monthly electronic, interactive PDF publication available to ACN members, and to stakeholders, the wider nursing and non-nursing community who subscribe to it.). Cite as: DeSouza, R. (2016). Wearable devices and the potential for community health improvement. Nurse Click, August, 14-15 (download pdf 643KB nurseclick_august_2016_final)

TV Glasses (1964)
TV Glasses (1964)

“Wearable technology“, “wearable devices“, and “wearables” all refer to electronic technologies or computers that are incorporated into items of clothing and accessories which can comfortably be worn on the body. These wearable devices can perform many of the same computing tasks as mobile phones and laptop computers; however, in some cases, wearable technology can outperform these hand-held devices through their integration into bodily movements and functions through inbuilt sensory and scanning features, for example. Wearables include: smart watches, fitness trackers, head mounted displays, smart clothing and jewellery. There are also more invasive varieties including implanted devices such as micro-chips or even smart tattoos, insulin pumps, or for contraception. The purpose of wearable technology is to create constant, seamless and hands-free access to electronics and computers.

Wearables are all about data. Thanks to recent advancements in sensors, we’re able to collect more information about ourselves than ever and use that data to make healthcare personal and tailored to our needs. Traditionally, qualitative health research and much clinical interaction relies on self-reporting by consumers, which is then interpreted by researchers and published for incorporation into practice by health practitioners. Along the way, much important information is “lost in translation”. New consumer healthcare technologies are brokering a shared informational interface between caregivers, clinicians, communities and researchers, allowing practitioners to access richer and more detailed empirical data on health consumer activity and their participation in health-seeking activities.

Consumer health technologies offer potential for care to be more equitable and patient-centred. The technological promise also brings concerns, including the impact on the patient-provider relationship and the appropriate use and validation of technologies. Technologies are also developed with particular service-users in mind, and rarely designed with the participation of people from structurally and culturally marginalised communities. In turn, the impacts of these technologies on health service education, planning and policy are far reaching. It is important that technology is not demographically blind, from a public health and community health perspective it must not reinforce the structural inequalities that exist between those who have access to health and those who haven’t.

The Centre for Culture, Ethnicity and Health, in partnership with the University of Melbourne’s Research Unit in Public Cultures and the Better Health Channel, recently organised a seminar and stakeholder consultation in Melbourne on July 28th with the aim of shaping a research agenda on wearable health technologies and culturally and linguistically diverse (CALD) communities. Typically wearables have been marketed toward the ‘wealthy worried and well’ demographic and the purpose of the seminar was to discuss both the generic issues that emerging wearable technologies present, as well as the unique issues for people from diverse backgrounds. The three hour event brought together clinicians, academics, developers, community organisations, and policymakers to consider the future issues with these technologies.

Seminar. Photo credit Jared Kuvent
Seminar. Photo credit Jared Kuvent

The first speaker was University of Melbourne researcher and lecturer Suneel Jethani who expressed scepticism about what wearable health technologies really may deliver for health, particularly for CALD communities. Suneel explored the growth of wearable health technologies through the notion of the pharmakon, the notion that every medicine is also poison, with the devices having capacity to be both beneficial and harmful. Janette Gogler, a Nurse Informatician from Melbourne’s Eastern Health described a randomised control trial of emerging technologies for remote patients with chronic heart failure and chronic obstructive pulmonary disease (COPD). In this trial patients took a number of their own physiological measurements including electrocardiography (ECG) monitoring, blood pressure, and spirometry. While the trial led many patients to feel more in control of their health through a better understanding of their physiology, there were also challenges, including having to manage their expectations of the technology, where patients who became suddenly unwell were upset that the system had not given them forewarning, even though the issues were outside the scope of the devices. Janette also raised the issue of research excluding speakers of additional languages. The final speaker was Deloitte Digital partner Sean McClowry, who noted that the uptake of wearable health technologies has been slower to reach ‘digital disruption’ compared to the smart phones, but saw the likelihood of exponential growth through a new model of care. Sean raised questions about the unprecedented nature of data: how to make it high quality and its analysis meaningful. The session by the three panellists was followed by two youth respondents and a question and answer session and then break out groups which developed further questions and issues for an emerging research program.

In the stakeholder consultation a number of critical themes emerged from many participants: the need to carefully manage privacy; the lack of accuracy of much consumer information; certification of apps; Western models of individual health hard-wired into the platform; the potential of peer support from new technologies; challenges for existing workforces and roles; and the potential of research to stigmatise as well as assist CALD communities. What was agreed was that consumer health technologies were only going to continue to grow and that no part of the health system would be undisrupted by the changes ahead, both intimidating and exciting!

Smells and bodies out of place: Microaggressions on public transport

A winter evening, wet and cold. Squashed into a tram. When a seat became available, I swooped down into it, finding myself next to a woman who proceeded to cover her nose. As she fanned her face with her other hand, I asked her with gentle concern if she was ok. She responded vehemently and with a force I didn’t expect: “It stinks in here, full of people smelling of onions and curry and shit”. Hmm. We were surrounded by Indians including me.

The new super sized E tram leaves the South Melbourne Depot. Pic. Nicole Garmston
The new super sized E tram leaves the South Melbourne Depot. Pic. Nicole Garmston

It’s not the first time I’ve had funny looks and comments about food and smells but the last time was when it was referring to my lunchbox, quite a few decades ago. The incident on the tram made me think about how smells are political (Manasalan). I’m writing about smells in hospitals in a book chapter coming out later this year and I am interested in what makes some public smells acceptable (for example disinfectant) and other more organic smells not so acceptable or even disgusting.

The food that is a salve for the dislocated, lonely, isolated migrant also sets her apart, making her stand out as visibly, gustatorily or olfactorily different. The soul sustaining resource also marks her as different, a risk. If her food is seen as smelly, distasteful, foreign, violent or abnormal, these characteristics can be transposed to her body and to those bodies that resemble her.

Laksa by Ruth De Souza
Laksa by Ruth De Souza

Food smells categorise groups of people who are different, and those viewed as negative are seen as a marker of non-western primitiveness. The emotion of disgust is emblematic of the too-near proximity of others and the fear that we might be invaded through our mouths. Probyn writes:

disgust reveals the object in all of its repellent detail, it causes us to step back, and, in that very action, we are also brought within the range of shame

However, nutritional assimilation or sanitisation to become odourless and modern does not guarantee belonging, like citizenship it remains thin when compared to the affective power of ethnic identity. (DeSouza, in press).

Grinding my own spice mix, by Ruth De Souza
Grinding my own spice mix, by Ruth De Souza

I am a committed foodie (defined by Johnston and Baumann, 2010: 61), as ‘somebody with a strong interest in learning about and eating good food who is not directly employed in the food industry’ who is also interested in the politics of food. My partner and I commute to Melbourne, a foodie paradise. Melbourne’s food culture has been made vibrant by the waves of migrants who have put pressure on public institutions, to expand and diversify their gastronomic offerings for a wider range of people. However, our consumption can naturalise and make invisible colonial and racialised relations. Thus the violent histories of invasion and starvation by the first white settlers, the convicts whose theft of food had them sent to Australia and absorbed into the cruel colonial project of poisoning, starving and rationing indigenous people remain hidden from view. So although we might love the food we might not care about the cooks at all as Rhoda Roberts points out:

In Australia, food and culinary delights are always accepted before the differences and backgrounds of the origin of the aroma are.

Sometimes though the acceptance is also class based or related to gentrification take Nick Earles’ point:

But it wasn’t as bad as being the kid from the Italian family who had his “wog” lunch thrown in the bin most days, only to watch the perpetrators spend $10 in cafes 20 years later for the exact same food – focaccia and prosciutto – with no recollection of what they’d done.

It’s been a long time since I’ve experienced someone else’s visible disgust. How to negotiate the smell that is out of place and the identity that does not belong? An ongoing process, but I’ve had plenty of practice.

Jellyfish and cabbage salad, by Ruth De Souza
Jellyfish and cabbage salad, by Ruth De Souza

Providing Culturally Safe Maternal and Child Healthcare

Cite as: DeSouza, R. (2016, June 1st). Keynote address-Providing Culturally Safe Maternal and Child Healthcare, Multicultural Health Research to Practice Forum: Early Interventions in Maternal and Child Health, Program, Organised by the Multicultural Health Service, South Eastern Sydney, Local Health District, Australia. Retrieved fromhttp://www.ruthdesouza.com/2016/06/11/cultural-safety-in-maternity/

 

Image from the film, the Namesake
Image from the film, the Namesake

A paragraph haunts me in The Namesake, Jhumpa Lahiri’s fictional account of the Indian immigrant experience. Ashoke and Ashima Ganguli migrate from Calcutta to Cambridge, Massachusetts after their arranged wedding. While pregnant, Ashima reflects:

Nothing feels normal. it’s not so much the pain which she knows she will survive. It’s the consequence: motherhood in a foreign land. For it was one thing to be pregnant to suffer the queasy mornings in bed, the sleepless nights, the dull throbbing in her back, the countless visits to the bathroom. Throughout the experience, in spite of her growing discomfort, she’s been astonished by her body’s ability to make life, exactly as her and grandmother and all her great grandmothers had done. That it was happening so far from home, unmonitored and unobserved by those she loved, had made it more miraculous still. But she is terrified to raise a child in a country where she is related to no one, where she knows so little, where life seems so tentative and spare. The Namesake, Jhumpa Lahiri

Ashima’s account beautifully captures the universality of the physical, embodied changes of maternity, the swelling, the nausea and other changes. But what Lahiri poignantly conveys is the singular emotional and cultural upheaval of these changes, the losses they give rise to. The absence of loving, knowledgeable, nurturing witnesses, the absence of a soft place to fall.

Arrival of baby girl in Prato, Tuscany. Credit DeSouza (2006).
Arrival of baby girl in Prato, Tuscany. Credit DeSouza (2006).

In 1994 I worked on a post-natal ward where I was struck by the limits of universality and how treating everybody the same was problematic. For example, ostensibly beneficial practices like the routine administration of an icepack for soothing the perineum postnatally, or the imperative to mobilise quickly or to “room in” have potentially damaging effects on women whose knowledge frameworks differed from the dominant Pakeha culture of healthcare. These practices combined with a system designed for an imagined white middle class user, where professionals had knowledge deficits and monocultural and assimilatory attitudes, led to unsafe practices such as using family members and children as interpreters (my horror when a boy child was asked to ask his mother about the amount of lochia on her pad). The sanctity of birth, requiring the special, nurturing treatment of new mothers and a welcome from a community was superseded by the factory culture of maximum efficiency. Not all mothers were created equal, not young mothers, not older mothers, not single mothers, not substance using mothers, not indigenous mothers, not culturally different mothers. The sense that I was a cog in a big machine that was inattentive to the needs of “other” mothers led me to critique the effectiveness of cultural safety in the curriculum. How was it possible that a powerful indigenous pedagogical tool for addressing health inequity was not evident in clinical practice?

Photo of me as a staff nurse back in the day.
Photo of me as a staff nurse back in the day.

Leaving the post-natal ward, I took up a role helping to develop a new maternal mental health service in Auckland. There too I began to question the limitations of our model of care which privileged talking therapies rather than providing practical help and support. I was also staggered at the time at the raced and classed profile of our clients who were predominantly white middle class career women. Interestingly, the longer I was involved in the service the greater the number of ethnic women accessed the service. For my Master’s thesis, I interviewed Goan women about their maternity experiences in New Zealand, where the importance of social support and rituals in the perinatal period was noted by participants.

As much as it was important to register and legitimate cultural difference, I was also aware of the importance of not falling into the cultural awareness chasm. As Gregory Philips notes in his stunning PhD, it was assumed that through teaching about other cultures, needs would be better understood as “complex, equal and valid” (Philips, 2015). However, it didn’t challenge privilege, class and power. As Joan Scott points out:

There is nothing wrong, on the face of it, with teaching individuals about how to behave decently in relation to others and about how to empathize with each other’s pain. The problem is that difficult analyses of how history and social standing, privilege, and subordination are involved in personal behavior entirely drop out (Scott, 1992, p.9).

The problem with culturalism is that the notion of “learning about” groups of people with a common ethnicity assumes that groups of people are homogenous, unchanging and can be known. Their cultural differences are then viewed as the problem, juxtaposed against an implicit dominant white middle class cultural norm. This became evident in my PhD analysis of interviews with Korean mothers who’d birthed in New Zealand. In Australia and the US, cultural competence has superseded cultural awareness as a mechanism for correcting the limitations of universalism, by drawing attention to organisational and systemic mechanisms that can be measured but as a strategy for individual and interpersonal action, several authors draw attention to competence as being part of the “problem”:

The concept of multicultural competence is flawed… I question the notion that one could become “competent” at the culture of another. I would instead propose a model in which maintaining an awareness of one’s lack of competence is the goal rather than the establishment of competence. With “lack of competence” as the focus, a different view of practicing across cultures emerges. The client is the “expert” and the clinician is in a position of seeking knowledge and trying to understand what life is like for the client. There is no thought of competence—instead one thinks of gaining understanding (always partial) of a phenomenon that is evolving and changing (Dean, 2001, p.624).

In Wellness for all: the possibilities of cultural safety and cultural competence in New Zealand, I advocated for a combination of cultural competence and cultural safety. Cultural safety was developed by Indigenous nurses in Aotearoa New Zealand as a mechanism for considering and equalizing power relationships between client and practitioner. It is an ethical framework for practice derived from postcolonial and critical theory. Cultural safety proposes that practitioners reflect on how their status as culture bearers impacts on care, with care being deemed culturally safe by the consumer or recipient of care. In my PhD I wrote about the inadequacy of the liberal foundations of nursing and midwifery discourses for meeting the health needs of diverse maternal groups. My thesis advocated for the extension of the theory and practice of cultural safety to critique nursing’s Anglo-European knowledge base in order to extend the discipline’s intellectual and political mandate with the aim of providing effective support to diverse groups of mothers. In Australia, cultural responsiveness, cultural security and cultural respect are also used, you can read more about this on my post on Minding the Gap.

So let’s look at culturally safe maternity care. My experience as a clinician and researcher reveal a gap between how birth is viewed. In contemporary settler nations like New Zealand, midwifery discourses position birth as natural and the maternal subject as physically capable of caring for her baby from the moment it is born, requiring minimal intervention and protection. The maternal body is represented as strong and capable for taking on the tasks of motherhood. In contrast, many cultures view birth as a process that makes the body vulnerable, requiring careful surveillance and monitoring and a period of rest and nurturing before the new mother can take on new or additional responsibilities. The maternal body is seen as a body at risk (Mahjouri, 2008), and vulnerable requiring special care through rituals and support. Therefore, practices based on a dominant discourse of birth as a normal physiological event and neoliberal discourses of productive subjectivity create a gap between what migrant  women expect in the care they expect from maternal services. These practices also constitute modes of governing which are intended to be empowering and normalizing, but are experienced  as disempowering because they don’t take into account other views of birth. Consequently there is no recognition on the part of maternity services that for a short time, there is a temporary role change, where the new mother transitions into a caregiver by being cared for. This social transition where the mother is mothered is sanctioned in order to safeguard the new mother, a demonstration to value and protect both future capacity for mothering and long term well being, in contrast with dominant discourses of responsibilisation and intensive motherhood. Thus, instead of a few days of celebration or a baby shower, extended post-partum practices are enacted which can include the following (Note that these will vary depending on in group differences, urbanisation, working mothers, migration):

  • Organised support- where family members (eg mother, mother-in-law, and other female relatives) care for the new mother and infant. Other women may also be involved eg birth attendants.
  • Rest period and restricted practices- where women have a prescribed rest periods of between 21 days and five weeks, sometimes called “Doing the month”. Activities including sexual activity, physical and intellectual work are reduced.
  • Diet- Special foods are prepared that promote healing/restore health or have a rebalancing function for example because the postpartum period is seen as a time when the body is cold, hot food (protein rich) chicken soup, ginger and seaweed, milk, ghee, nuts, jaggery might be consumed. Special soups and tonics with a cleansing or activating function are consumed eg to help the body expel lochia, to increase breastmilk. These foods might be consumed at different stages of the perinatal period and some food might be prohibited while breastfeeding.
  • Hygiene and warmth- particular practices might be adhered to including purification/bathing practices eg warm baths, immersion. Others might include not washing hair.
  • Infant care and breastfeeding- Diverse beliefs about colostrum, other members of family may take more responsibility while mother recovers and has a temporarily peripheral role. Breastfeeding instigation and duration may differ.
  • Other practices include: binding, infant massage, maternal massage, care of the placenta.

If women are confronted with an unfamiliar health system with little support and understanding, they can experience stress, insecurity, loneliness, isolation, powerlessness, hopelessness. This combined with communication gaps and isolation, poor information provision, different norms, feeling misunderstood and feeling stigmatized. What could be a special time is perceived as a lack of care. Fortunately in Australia there are some excellent resources, for example this research based chapter on Cultural dimensions of pregnancy, birth and post-natal care produced by Victoria Team, Katie Vasey and Lenore Manderson, proposes useful questions for perinatal assessment which I have summarised below:

  • Are you comfortable with both male and female health care providers?
  • Are there any cultural practices that we need to be aware of in caring for you during your pregnancy, giving birth and postnatal period? – For example, requirements with the placenta, female circumcision or infant feeding method.
  • In your culture, do fathers usually attend births? Does your partner want to attend the birth of his child? If not, is there another close family member you would like to be present? Would you like us to speak to them about your care?
  • Are there any foods that are appropriate or inappropriate for you according to your religion or customs during pregnancy, birth and the postpartum period?
  • Are there any beliefs or customs prohibiting physical activity during pregnancy, birth and the postpartum period? Do you plan to observe these? – For example, a confinement period.
  • What is the culturally acceptable way for you to express pain during childbirth? – For example, screaming or trying to keep silent.
  • Are there any precautions with infant care?
  • How many visitors do you expect while you are in the hospital?
  • Do you have anyone in your family or community who can help you in practical ways when you get home?

Negotiating between cultural practices, values and norms, religious beliefs and views, beliefs about perinatal care is a starting point. It is also important to consider language proficiency, health literacy, quality of written materials, and level of acculturation. For further information on health literacy see the Centre for Culture, Ethnicity & Health (CEH) resources including: What is health literacy?, Social determinants of health and health literacy.  Using professional interpreters improves communication, clinical outcomes, patient satisfaction and quality of care, and reduces medical testing, errors, costs and risk of hospitalisation. Lack of appropriate interpreter service use is associated with adverse health outcomes. Centre for Culture,Ethnicity & Health (CEH) has excellent resources in this regard: Interpreters: an introduction, Assessing the need for an interpreter, Booking and briefing an interpreter, Communicating via an interpreter, Debriefing with an interpreter, Developing a comprehensive language services response, Language services guide Managing bilingual staffPlanning for translation, Recruiting bilingual staff.

Assessment should also consider:

  • Genetics and pregnancy: women’s age, parity, planning and acceptance of pregnancy, pregnancy related health behaviour and perceived health during pregnancy. 
  • Migration: women’s knowledge of/familiarity with the prenatal care services/system, experiences and expectations with prenatal care use in their country of origin, pregnancy status on arrival in the new industrialized western country.
  • Culture: women’s cultural practices, values and norms, acculturation, religious beliefs and views, language proficiency, beliefs about pregnancy and prenatal care.
  • Position in the host country: women’s education level, women’s pregnancy-related knowledge, household arrangement, financial resources and income.
  • Social network: size and degree of contact with social network, information and support from social network.
  • Accessibility: transport, opening hours, booking appointments, direct and indirect discrimination by the prenatal care providers.
  • Expertise: prenatal care tailored to patients’ needs and preferences.
  • Treatment and communication: communication from prenatal care providers to women, personal treatment of women by prenatal care providers, availability of health promotion/information material, use of alternative means of communication.
  • Professionally defined need: referral by general practitioners and other healthcare providers to prenatal care providers

A review by Small, Roth et al., (2014) found that what immigrant and non-immigrant women want from maternity care is similar: safe, high quality, attentive and individualised care, with adequate information and support. Generally immigrant women were less positive about care than non-immigrant women, in part due to communication issues, lack of familiarity with care systems, perceptions of discriminatory care which was not kind or respectful. The challenge for health systems is to address the barriers immigrant women face by improving communication, increasing women’s understanding of care provision and reducing discrimination. Clinical skills including—introspection, self-awareness, respectful questioning, attentive listening, curiosity, interest, and caring.

Also:

  • Facilitating trust, control
  • Delivering quality, safe care, communicating, being caring, providing choices
  • Facilitating access to interpreters and choice of gender of care provider,
  • Considering cultural practices, preferences and needs/different expectations for care
  • Engendering positive interactions, being empathetic, kind, caring and supportive.
  • Taking concerns seriously
  • Preserving dignity and privacy
  • Seeing a person both as an individual, a family member and a community member
  • Developing composure managing verbal and non-verbal expressions of disgust and surprise
  • Paradoxical combination of two ideas— being “informed” and “not knowing” simultaneously.

In that sense, our knowledge is always partial and we are always operating from a position of incompletion or lack of competence. Our goal is not so much to achieve competence but to participate in the ongoing processes of seeking understanding and building relationships. This understanding needs to be directed toward ourselves and not just our clients. As we question ourselves we gradually wear away our own resistance and bias. It is not that we need to agree with our clients’ practices and beliefs; we need to understand them and under-stand the contexts and history in which they develop (Dean, 2001, p.628).

Conclusion

In this presentation I have invited you to examine your own values and beliefs about the perinatal period and how they might impact on the care you might provide. I have asked you to consider both the similarities and differences between how women from culturally diverse communities experience maternity and those from the dominant culture. Together, we have scrutinised a range of strategies for enhancing trust, engagement and perinatal outcomes for all women. Drawing on my own clinical practice and research, I have asked you to consider an alternative conceptualisation of the maternal body when caring for some women, that is the maternal body as vulnerable, which requires a period of rest and nurturing. This framing requires a temporary role change for the new mother to transition into being a caregiver, by being cared for, so that her future capacity for mothering and long term well being are enhanced. I have asked you to reflect on how supposedly empowering practices can be experienced as disempowering because they don’t take into account this view of birth. In the context of differing conceptualisations of birth and the maternal body I have drawn special attention to: negotiating between health beliefs; having cultural humility; considering ways in which your own knowledge is always partial; and recommended a range of resources that can be utilised to ensure positive outcomes for women and their families. As health services in Australia grapple with changing societal demographics including cultural diversity, changing consumer demands and expectations; resource constraints; the limitations in traditional health care delivery; greater emphasis on transparency, accountability, evidence- based practice (EBP) and clinical governance (Davidson et al., 2006), questions of how to provide effective universal health care can be enhanced by considering how differing views can be incorporated as they hold potential benefits for all.

Selected references

  • Boerleider, A. W., Wiegers, T. A., Manniën, J., Francke, A. L., & Devillé, W. L. (2013). Factors affecting the use of prenatal care by non-western women in industrialized western countries: A systematic review. BMC Pregnancy and Childbirth, 13(1), 8.
  • Dennis, C. L., Fung, K., Grigoriadis, S., Robinson, G. E., Romans, S., & Ross, L. (2007). Traditional postpartum practices and rituals: A qualitative systematic review. Women’s Health (London, England), 3(4), 487-502. doi:10.2217/17455057.3.4.487.
  • Mander, S., & Miller, Y. D. (2016). Perceived safety, quality and cultural competency of maternity care for culturally and linguistically diverse women in queensland. Journal of Racial and Ethnic Health Disparities, 3(1), 83-98. doi:10.1007/s40615-015-0118.
  • Small, R., Roth, C., Raval, M., Shafiei, T., Korfker, D., Heaman, M. Gagnon, A. (2014). Immigrant and non-immigrant women’s experiences of maternity care: A systematic and comparative review of studies in five countries. BMC Pregnancy and Childbirth, 14(1).

Additional web resources

What is privilege and cultural appropriation? and why is it so difficult to talk about?

On 15 February 2016, I spoke on 612 ABC Brisbane Afternoons with Kelly Higgins-Devine about cultural appropriation and privilege. Our discussion was followed by discussion with guests: Andie Fox – a feminist and writer; Carol Vale a Dunghutti woman; and Indigenous artist, Tony Albert. I’ve used the questions asked during the interview as a base for this blog with thanks to Amanda Dell (producer).

Why has it taken so long for the debate to escape academia to be something we see in the opinion pages of publications now?

Social media and online activism have catapulted questions about identities and politics into our screen lives. Where television allowed us to switch the channel, or the topic skilfully changed at awkward moments in work or family conversations, our devices hold us captive. Simply scrolling through our social media feeds can encourage, enrage or mobilise us into fury or despair. Whether we like it or not, as users of social media we are being interpolated into the complex terrain of identity politics. Merely sharing a link on your social media feed locates you and your politics, in ways that you might never reveal in real time social conversations. ‘Sharing’ can have wide ranging consequences, a casual tweet before a flight resulted in Justine Sacco moving from witty interlocutor to pariah in a matter of hours. The merging of ‘private’ and public lives never being more evident.

How long has the term privilege been around?

The concept of privilege originally developed in relation to analyses of race and gender but has expanded to include social class, ability level, sexuality and other aspects of identity. Interestingly, Jon Greenberg points out that although people of color have fought racism since its inception, the best known White Privilege educators are white (Peggy McIntosh, Tim Wise and Robin DiAngelo). McIntosh’s 1988 paper White Privilege and Male Privilege: A Personal Account of Coming to See Correspondences through Work in Women’s Studies extended a feminist analysis of patriarchal oppression of women to that of people of color in the United States. This was later shortened into the essay White Privilege: Unpacking the Invisible Knapsack (pdf), which has been used extensively in a a range of settings because of it’s helpful list format .

Many people have really strong reactions to these concepts – why is that?

Robin DiAngelo, professor of multicultural education and author of What Does it Mean to Be White? Developing White Racial Literacy developed the term ‘white fragility’ to identify:

a state in which even a minimum amount of racial stress becomes intolerable, triggering a range of defensive moves. These moves include outward display of emotions such as anger, fear and guilt, and behaviors such as argumentation, silence and leaving the stress-inducing situation

DiAngelo suggests that for white people, racism or oppression are viewed as something that bad or immoral people do. The racist is the person who is verbally abusive toward people of color on public transport, or a former racist state like apartheid South Africa. If you see yourself as a ‘good’ person then it is painful to be ‘called out’, and see yourself as a bad person. Iris Marion Young’s work useful. She conceptualises oppression in the Foucauldian sense as:

the disadvantage and injustice some people suffer not because of a tyrannical power coerces them but because of the everyday practices of a well-intentioned liberal society…

Young points out the actions of many people going about their daily lives contribute to the maintenance and reproduction of oppression, even as few would view themselves as agents of oppression. We cannot avoid oppression, as it is structural and woven throughout the system, rather than reflecting a few people’s choices or policies. Its causes are embedded in the unquestioned norms, habits, symbols and assumptions underlying institutional rules and the collective consequences of following those rules (Young, 1990). Seeing oppression as the practices of a well intentioned liberal society removes the focus from individual acts that might repress the actions of others to acknowledging that “powerful norms and hierarchies of both privilege and injustice are built into our everyday practices” (Henderson & Waterstone, 2008, p.52). These hierarchies call for structural rather than individual remedies.

We probably need to start with privilege – what does that term mean?

McIntosh identified how she had obtained unearned privileges in society just by being White and defined white privilege as:

an invisible package of unearned assets which I can count on cashing in each day, but about which I am meant to remain oblivious (p. 1).

Her essay prompted understanding of how one’s success is largely attributable to one’s arbitrarily assigned social location in society, rather than the outcome of individual effort.

“I got myself where I am today. Honestly, it’s not that hard. I think some people are just afraid of a little hard work and standing on their own two feet, on a seashell, on a dolphin, on a nymph-queen that are all holding them up.”
“I got myself where I am today. Honestly, it’s not that hard. I think some people are just afraid of a little hard work and standing on their own two feet, on a seashell, on a dolphin, on a nymph-queen that are all holding them up.”

From: The Birth of Venus: Pulling Yourself Out Of The Sea By Your Own Bootstraps by Mallory Ortberg 

McIntosh suggested that white people benefit from historical and contemporary forms of racism (the inequitable distribution and exercise of power among ethnic groups) and that these discriminate or disadvantage people of color.

How does privilege relate to racism, sexism? Are they the same thing?

It’s useful to view the ‘isms’ in the context of institutional power, a point illustrated by Sian Ferguson:

In a patriarchal society, women do not have institutional power (at least, not based on their gender). In a white supremacist society, people of color don’t have race-based institutional power.

Australian race scholars Paradies and Williams (2008) note that:

The phenomenon of oppression is also intrinsically linked to that of privilege. In addition to disadvantaging minority racial groups in society, racism also results in groups (such as Whites) being privileged and accruing social power. (6)

Consequently, health and social disparities evident in white settler societies such as New Zealand and Australia (also this post about Closing the gap) are individualised or culturalised rather than contextualised historically or socio-economically. Without context  white people are socialized to remain oblivious to their unearned advantages and view them as earned through merit. Increasingly the term privilege is being used outside of social justice settings to the arts. In a critique of the Hottest 100 list in Australia Erin Riley points out that the dominance of straight, white male voices which crowds out women, Indigenous Australians, immigrants and people of diverse sexual and gender identities. These groups are marginalised and the centrality of white men maintained, reducing the opportunity for empathy towards people with other experiences.

Do we all have some sort of privilege?

Yes, depending on the context. The concept of intersectionality by Kimberlé Crenshaw is useful, it suggests that people can be privileged in some ways and not others. For example as a migrant and a woman of color I experience certain disadvantages but as a middle class cis-gendered, able-bodied woman with a PhD and without an accent (only a Kiwi one which is indulged) I experience other advantages that ease my passage through the world You can read more in the essay Explaining White Privilege to a Broke White Person.

How does an awareness of privilege change the way a society works?

Dogs and Lizards: A Parable of Privilege by Sindelókë is a helpful way of trying to understand how easy it is not to see your own privilege and be blind to others’ disadvantages. You might have also seen or heard the phrase ‘check your privilege’ which is a way of asking someone to think about their own privilege and how they might monitor it in a social setting. Exposing color blindness and challenging the assumption of race-neutrality is one mechanism for addressing the issue of privilege and its obverse oppression.  Increasingly in health and social care, emphasis is being placed on critiquing how our own positions contribute to inequality (see my chapter on cultural safety), and developing ethical and moral commitments to addressing racism so that equality and justice can be made possible. As Christine Emba notes “There’s no way to level the playing field unless we first can all see how uneven it is.” One of the ways this can be done is through experiencing exercises like the Privilege Walk which you can watch on video. Jenn Sutherland-Miller in Medium reflects on her experience of it and proposes that:

Instead of privilege being the thing that gives me a leg up, it becomes the thing I use to give others a leg up. Privilege becomes a way create equality and inclusion, to right old wrongs, to demand justice on a daily basis and to create the dialogue that will grow our society forward.

Is privilege something we can change?

If we move beyond guilt and paralysis we can use our privilege to build solidarity and challenge oppression.  Audra Williams points out that a genuine display of solidarity can require making a personal sacrifice. Citing the example of Aziz Ansari’s Master of None, where in challenging the director of a commercial about the lack of women with speaking roles, he ends up not being in the commercial at all when it is re-written with speaking roles for women. Ultimately privilege does not gets undone through “confession” but through collective work to dismantle oppressive systems as Andrea Smith writes.

Cultural appropriation is a different concept, but an understanding of privilege is important, what is cultural appropriation?

Cultural appropriation is when somebody adopts aspects of a culture that is not their own (Nadra Kareem Little). Usually it is a charge levelled at people from the dominant culture to signal power dynamic, where elements have been taken from a culture of people who have been systematically oppressed by the dominant group. Most critics of the concept are white (see white fragility). Kimberly Chabot Davis proposes that white co-optation or cultural consumption and commodification, can be cross-cultural encounters that can foster empathy and lead to working against privilege among white people. However, an Australian example of bringing diverse people together through appropriation backfired, when the term walkabout was used for a psychedelic dance party. Using a deeply significant word for initiation rites, for a dance party was seen as disrespectful. The bewildered organiser was accused via social media of cultural appropriation and changed the name to Lets Go Walkaround. So, I think that it is always important to ask permission and talk to people from that culture first rather than assuming it is okay to use.

What is the line between cultural appropriation and cultural appreciation?

Maisha Z. Johnson cultural appreciation  or exchange  where mutual sharing is involved.

Can someone from a less privileged culture appropriate from the more privileged culture?

No, marginalized people often have to adopt elements of the dominant culture in order to survive conditions that make life more of a struggle if they don’t.

Does an object or symbol have to have some religious or special cultural significance to be appropriated? 

Appropriation is harmful for a number of reasons including making things ‘cool’ for White people that would be denigrated in People of Color. For example Fatima Farha observes that when Hindu women in the United States wear the bindi, they are often made fun of, or seen as traditional or backward but when someone from the dominant culture wears such items they are called exotic and beautiful. The critique of appropriation extends from clothing to events Nadya Agrawal critiques The Color Run™ where you can:

run with your friends, come together as a community, get showered in colored powder and not have to deal with all that annoying culture that would come if you went to a Holi celebration. There are no prayers for spring or messages of rejuvenation before these runs. You won’t have to drink chai or try Indian food afterward. There is absolutely no way you’ll have to even think about the ancient traditions and culture this brand new craze is derived from. Come uncultured, leave uncultured, that’s the Color Run, promise.

The race ends with something called a “Color Festival” but does not acknowledge Holi. This white-washing (pun intended) eradicates everything Indian from the run including  Holi, Krishna and spring. In essence as Ijeoma Oluo points out cultural appropriation is a symptom, not the cause, of an oppressive and exploitative world order which involves stealing the work of those less privileged. Really valuing people involves valuing their culture and taking the time to acknowledge its historical and social context. Valuing isn’t just appreciation but also considering whether the appropriation of intellectual property results in economic benefits for the people who created it. Kareem Abdul-Jabbar suggests that it is often one way:

One very legitimate point is economic. In general, when blacks create something that is later adopted by white culture, white people tend to make a lot more money from it… It feels an awful lot like slavery to have others profit from your efforts.

 

Loving burritos doesn’t make someone less racist against Latinos. Lusting after Bo Derek in 10 doesn’t make anyone appreciate black culture more… Appreciating an individual item from a culture doesn’t translate into accepting the whole people. While high-priced cornrows on a white celebrity on the red carper at the Oscars is chic, those same cornrows on the little black girl in Watts, Los Angeles, are a symbol of her ghetto lifestyle. A white person looking black gets a fashion spread in a glossy magazine; a black person wearing the same thing gets pulled over by the police. One can understand the frustration.

The appropriative process is also selective, as Greg Tate observes in Everything but the burden, where African American cultural properties including music, food, fashion, hairstyles, dances are sold as American to the rest of the world but with the black presence erased from it. The only thing not stolen is the burden of the denial of human rights and economic opportunity. Appropriation can be ambivalent, as seen in the desire to simultaneously possess and erase black culture. However, in the case of the appropriation of the indigenous in the United States, Andrea Smith declares (somewhat ironically), that the desire to be “Indian” often precludes struggles against genocide, or demands for treaty rights. It does not require being accountable to Indian communities, who might demand an end to the appropriation of spiritual practices.

Go West – Black: Random Coachella attendee, 2014. Red: Bison skull pile, South Dakota, 1870’s.
Go West – Black: Random Coachella attendee, 2014. Red: Bison skull pile, South Dakota, 1870’s by Roger Peet.

Some people believe the cuisines of other cultures have been appropriated – is this an extreme example, or is it something we should consider?

The world of food can be such a potent site of transformation for social justice. I am a committed foodie (“somebody with a strong interest in learning about and eating good food who is not directly employed in the food industry” (Johnston and Baumann, 2010: 61). I am also interested in the politics of food. I live in Melbourne, where food culture has been made vibrant by the waves of migrants who have put pressure on public institutions, to expand and diversify their gastronomic offerings for a wider range of people. However, our consumption can naturalise and make invisible colonial and racialised relations. Thus the violent histories of invasion and starvation by the first white settlers, the convicts whose theft of food had them sent to Australia and absorbed into the cruel colonial project of poisoning, starving and rationing indigenous people remain hidden from view. So although we might love the food we might not care about the cooks at all as Rhoda Roberts Director of the Aboriginal Dreaming festival observed in Elspeth Probyn’s excellent book Carnal Appetites:

In Australia, food and culinary delights are always accepted before the differences and backgrounds of the origin of the aroma are.

Lee’s Ghee is an interesting example of appropriation, she developed an ‘artisanal’ ghee product, something that has been made for centuries in South Asia.

Lee Dares was taking the fashion world by storm working as a model in New York when she realized her real passion was elsewhere. So, she made the courageous decision to quit her glamorous job and take some time to explore what she really wanted to do with her life. Her revelation came after she spent some time learning to make clarified butter, or ghee, on a farm in Northern India. Inspired, she turned to Futurpreneur Canada to help her start her own business, Lee’s Ghee, producing unique and modern flavours of this traditional staple of Southeast Asian cuisine and Ayurvedic medicine.

The saying “We are what we eat” is about not only the nutrients we consume but also to beliefs about our morality. Similarly ‘we’ are also what we don’t eat, so our food practices mark us out as belonging or not belonging to a group.So, food has an exclusionary and inclusionary role with affective consequences that range from curiosity, delight to disgust. For the migrant for example, identity cannot be taken for granted, it must be worked at to be nurtured and maintained. It becomes an active, performative and processual project enacted through consumption. With with every taste, an imagined diasporic group identity is produced, maintained and reinforced. Food preparation represents continuity through the techniques and equipment that are used which affirm family life, and in sharing this food hospitality, love, generosity and appreciation can be expresssed. However, the food that is a salve for the dislocated, lonely, isolated migrant also sets her apart, making her stand out as visibly, gustatorily or olfactorily different. The resource for her well being also marks her as different and a risk. If her food is seen as smelly, distasteful, foreign, violent or abnormal, these characteristics can be transposed to her body and to those bodies that resemble her. Dares attempt to reproduce food that is made in many households and available for sale in many ‘ethnic’ shops and selling it as artisanal, led to accusations of ‘colombusing’ — a term used to describe when white people  claim they have discovered or made something that has a long history in another culture. Also see the critique by Navneet Alang in Hazlitt:

The ethnic—the collective traditions and practices of the world’s majority—thus works as an undiscovered country, full of resources to be mined. Rather than sugar or coffee or oil, however, the ore of the ethnic is raw material for performance and self-definition: refine this rough, crude tradition, bottle it in pretty jars, and display both it and yourself as ideals of contemporary cosmopolitanism. But each act of cultural appropriation, in which some facet of a non-Western culture is columbused, accepted into the mainstream, and commodified, reasserts the white and Western as norm—the end of a timeline toward which the whole world is moving.

If this is the first time someone has heard these concepts, and they’re feeling confused, or a bit defensive, what can they do to understand more about it?

Here are some resources that might help, videos, illustrations, reading and more.

White privilege

Cultural appropriation

All I want for Christmas is… On International Day of Solidarity with Migrants 2015

December 18th marks the anniversary of the signing of the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families by the United Nations in 1990. Lobbying from Filipino and other Asian migrant organisations in 1997, led to December18th being promoted as an International Day of Solidarity with Migrants. The day recognises the contributions of migrants to both the economies of their receiving and home countries, and promotes respect for their human rights. However, as of 2015, the Convention has only been signed by a quarter of UN member states.

2015 has seen the unprecedented displacement of people globally with tragic consequences. UNHCR’s annual Global Trends report shows a massive increase in the number of people forced to flee their homes. 59.5 million people were forcibly displaced at the end of 2014 compared to 51.2 million a year earlier and 37.5 million a decade ago.

Politicians and media have a pivotal role in agenda setting and shaping public opinion around migrants, refugees and asylum seekers. A 100-page report, Moving Stories, released for International Migrants Day reviews media coverage of migration across the European Union and 14 countries across the world. The report acknowledges the vulnerability of refugees and migrants and the propensity for them to be politically scapegoated for society’s ills and has five key recommendations, briefly (p.8):

  1. Ethical context: that the following five core principles of journalism are adhered to:
    accuracy, independence, impartiality, humanity and accountability;
  2. Newsroom practice: have diversity in the newsroom, journalists with specialist knowledge, provide detailed information on the background of migrants and refugees and the consequences of migration;
  3. Engage with communities: Refugee groups, activists and NGOs can be briefed
    on how best to communicate with journalists;
  4. Challenge hate speech.
  5. Demand access to information: When access to information is restricted, media and civil society groups should press the national and international governments to be more transparent.

Much remains to be done, but it is heartening to see Canadian Prime Minister Justin Trudeau’s response to the arrival of thousands of Syrian refugees: 

You are home…Welcome home…

Tonight they step off the plane as refugees, but they walk out of this terminal as permanent residents of Canada. With social insurance numbers. With health cards and with an opportunity to become full Canadians

Trudeau’s response sharply contrasts with that of the United States, where many politicians have responded to Islamophobic constituencies with restrictions or bans on receiving refugees. The welcome from Indigenous Canadians to newly arrived refugees has also been generous and inclusive, considering that refugees and migrants are implicated in the ongoing colonial practices of the state. These practices can maintain Indigenous disadvantage while economic, social and political advantage accrue to settlers. It is encouraging that Trudeau’s welcome coincided with an acknowledgement of the multiple harms Canada has imposed on Indigenous people since colonisation. 

Alarmingly, the center-right Danish government’s bill currently before the Danish Parliament on asylum policy, allows for immigration authorities to seize jewellery and other valuables from refugees in order to recoup costs. The capacity to remove personal valuables from people seeking sanctuary is expected to be effective from February 2016 and has a chilling precedent in Europe, as Dylan Matthews notes in Vox:

Denmark was occupied by Nazi Germany for five years, from 1940 to 1945, during which time Germany confiscated assets from Jewish Danes, just as it did to Jews across Europe. Danish Jews saw less seized than most nations under Nazi occupation; the Danish government successfully prevented most confiscations until 1943, and Danes who survived the concentration camps generally returned to find their homes as they had left them, as their neighbors prevented Nazis from looting them too thoroughly. But Nazi confiscations still loom large in European historical memory more generally.

The UN, the Parliamentary Assembly of the Council of Europe (PACE) and the International Organization for Migration (IOM) have advocated for the development of regional and longer term responses. Statements echoed by Ban Ki-moon which proposed better cooperation and responsibility sharing between countries and the upholding of the human rights of migrants regardless of their status (Australia take note). He proposes that we:

must expand safe channels for regular migration, including for family reunification, labour mobility at all skill levels, greater resettlement opportunities, and education opportunities for children and adults.

On International Migrants Day, let us commit to coherent, comprehensive and human-rights-based responses guided by international law and standards and a shared resolve to leave no one behind.

What does this all mean for Australia and New Zealand? I’ve written elsewhere about the contradiction between the consumptive celebrations of multiculturalism and the increasing brutality and punitiveness of policies in both countries; the concerns of Australia’s key professional nursing and midwifery bodies about the secrecy provisions in the Australian Border Force Act 2015 and the ways in which New Zealand is emulating a punitive and dehumanising Australian asylum seeker policy.

It is appropriate then in this season of goodwill and peace to write an updated Christmas wish list, but with a migration focus. As a child growing up in Nairobi, one of my pleasures around Christmas time was drawing up such a list. I was so captivated with this activity that I used to drag our Hindu landlord’s children into it. This was kind of unfair as I don’t think they received any of the gifts on their list. For those who aren’t in the know, a wish list is a list of goods or services that are wanted and then distributed to family and friends, so that they know what to purchase for the would-be recipient. The idea of a list is somewhat manipulative as it is designed around the desires of the recipient rather than the financial and emotional capacity of the giver. Now that I’ve grown up a little, I’ve eschewed the consumptive, labour exploitative, commercial and land-filling aspects of Christmas in favour of spending time with family, as George Monbiot notes in his essay The Gift of Death:

They seem amusing on the first day of Christmas, daft on the second, embarrassing on the third. By the twelfth they’re in landfill. For thirty seconds of dubious entertainment, or a hedonic stimulus that lasts no longer than a nicotine hit, we commission the use of materials whose impacts will ramify for generations.

So, this list focuses on International Day of Solidarity with Migrants. All I want for Christmas is that ‘we’:

  1. End the Australian Government policy of turning back people seeking asylum by boat ie “unauthorised maritime arrivals”. 
  2. Stop punishing the courageous and legitimate right to seek asylum with the uniquely cruel policy of mandatory indefinite detention and offshore processing. Mandatory detention must end. It is highly distressing and has long-term consequences.
  3. Remove children and adolescents from mandatory detention. Children, make up half of all asylum seekers in the industrialized world. Australia, The United States, the United Kingdom, Germany and Italy directly contradict The Convention on the Rights of the Child (UNCRC).
  4. Engage in regional co-operation to effectively and efficiently process refugee claims and provide safe interim places. Ensure solutions that uphold people’s human rights and dignity, see this piece about the Calais “Jungle”.
  5. End the use of asylum-seeker, refugee and migrant bodies for political gain.
  6. Demand more ethical reporting by having news media: appoint specialist migration reporters; improve training of journalists on migration issues and problems of hate-speech; create better links with migrant and refugee groups; and employ journalists from ethnic minority communities, see Moving Stories.
  7. Follow the money. Is our money enabling corporate complicity in detention? Support divestment campaigns, see X Border Operational matters. Support pledges that challenge the outsourcing of misery for example No Business in Abuse (NBIA) who have partnered with GetUp.
  8. Support the many actions by Indigenous peoples to welcome refugees. Indigenous demands for sovereignty and migrant inclusion are both characterised as threats to social cohesion in settler-colonial societies.
  9. Challenge further racial injustice through social and economic exclusion and violence that often face people from migrantnd refugee backgrounds.
  10. Ask ourselves these questions:‘What are my borders?’ ‘Who do I/my community exile?’ ’How and where does my body act as a border?’ and ‘What kind of borders exist in my spaces?’ The questions are from a wonderful piece by Farzana Khan.
Seppo Leinonen, a cartoonist and illustrator from Finland
Seppo Leinonen, a cartoonist and illustrator from Finland

Medical pluralism: Supporting co-existing diverse therapeutic traditions in mental health

This was first published in the Spring 2015 edition (Issue 41) of the Federation of Ethnic Councils of Australia (FECCA) national magazine, Australian Mosaic. Cite as: DeSouza, R. (2015). Medical pluralism: Supporting co-existing diverse therapeutic traditions in mental health. Australian Mosaic (FECCA). 41, 34-36.

Decades afterward, I still recall the frequent waking, getting out of bed and moving around our Nairobi house in the dark. Sometimes I moved pots and pans, re-arranged furniture, but mostly I caused a disturbance. My parents decided to address my distressing behaviour by taking me to an older woman from our Goan community who chanted
prayers and anointed me with chilli and garlic. Her incantations arrested the nocturnal disturbances, which never perturbed me again. The evil eye was diagnosed, the somnambulism caused by envy, inflicted on me with a look. I later learned that the
evil eye is seen as the cause of many problems and illnesses globally with a multitude of rituals and remedies to either prevent or cure it.

Charm- Niall Corbet on Flickr

My own experience of being a multiple migrant and then a clinician, led me to consider many possible antecedents to mental illness. The dominance of biomedicine to manage health and illness, assumes cross-cultural universals. Yet, mental health is a contested specialty with problematic treatments. Culturally derived norms and values from a specific location impose labels on behaviour from another context, which drive treatments, or management that flattens those contexts. Psychiatry and counseling are often viewed skeptically by people from refugee and migrant backgrounds who instead turn first to informal sources outside the health system including self-help, family, community, social networks, various forms of spirituality, religion and church. Increasingly, clinicians are appreciating the part these sources of support play.

Once mental health services are accessed, if staff focus on mental illness without understanding the cultural context or without realising that clients and their families might integrate both biomedical and more “traditional” beliefs, quality psychiatric assessment can be impaired and the potential for inaccurate diagnosis and inappropriate treatment and care can occur. Incorrectly identifying culturally appropriate behaviour or experiences as psychopathology is problematic, just as assuming that something is cultural rather than psychopathology or symptoms. However, every culture has frameworks for understanding health and illness and how these are demarcated.

In Aotearoa New Zealand, where I have spent most of my life, Maori psychiatrist Mason Durie has conceptualised Maori health as encompassing mental (hinengaro), physical (tinana), family/social (whänau), and spiritual (wairua) dimensions. In Australia, the National Aboriginal Health Strategy (1989) views wellbeing through a communal lens, broadening the concept of well-being beyond the to the social, emotional and cultural well-being of the whole community. Situating Aboriginal and Torres Strait Islander mental health within a framework of social and emotional wellbeing emphasise wellness, harmony and balance rather than illness and symptom reduction (AIHW 2012). Connection to land, culture, spirituality, ancestry, family and community, interdependence between families, communities, land, sea and spirit are also seen as necessary for health. The Ways Forward National Aboriginal and Islander Mental Health Policy Report 3 (pp19-20) adapted from Swan and Raphael also prioritises holism, self-determination, the need for cultural understanding, the impact of history in trauma and loss, human rights, acknowledges the impact of racism and stigma, kinship, cultural diversity and Aboriginal strengths.

Contemporary neoliberal health discourses have co-opted patient rights movements and positioned patients as consumers ­­-active partners in health who are responsible for their own health. Consumer engagement and health literacy form a suite of strategies for inducing medical citizenship, so that individuals can participate and become knowledgeable consumers. Some would argue these are assimilatory processes. However, in order for medical citizenship to be a two way process, one’s own beliefs about the causes of illness and the corresponding treatments must also be considered. Health literate organisations must also be open to a multiplicity of illness explanations and to those locations from which such beliefs are derived. As Beijers and de Freitas (p.245), note:

Health care is transforming social suffering into illnesses and diagnoses, while often denying the social and moral origins and implications of the suffering

David Ingleby suggests that two perspectives are available for thinking about culture and mental illness. A technical perspective assumes mainstream frameworks and treatments can be universalised to all patients/clients and that more sensitivity and overcoming linguistic and cultural barriers will assist therapeutic efforts. With a technical approach to mental health, the goal of care is to deliver it efficiently and increase utilization (efficacy). Strategies can include access to language matched information and professional interpreting services, or improving mental health literacy and awareness, supporting community resilience and coping strategies. However, technical approaches do not ask questions about power imbalances between groups.

On the other hand when care is given through a critical lens (equity), the questions become what is going on when interventions developed for one population are applied to another? What are the underlying power relations? Whose interests are being served? Is there a covert attempt to impose the values and perspectives of the dominant group? Ingelby suggests that becoming a user of Western health care involves accepting its underlying philosophy and values and “acquiring health literacy”.

It is important that collaborations between traditional healing mechanisms and western practice are made possible, however within professional discourses traditional healing is frequently viewed as primitive and unprofessional, yet people often utilize different health beliefs simultaneously in their search for optimal treatment. Furthermore, assimilation and acculturation into the dominant culture are thought to negatively impact on migrant health status and to contribute to migrant ill health and disparities as the healthy migrant advantage that people arrive with reduces after a year. Developing collaborative models that combine traditional and Western health knowledges and combining health literacy and consumer participation with better access and quality of staff can indeed facilitate better health outcomes.

As an educator, I am interested in how I can do my part to increase the awareness and openness to pluralism, so that the next generation of nurses can be effective and therapeutic. There is guidance available from The Cultural Diversity Plan for Victoria’s Specialist Mental Health Services. There is an emphasis on being respectful and having non-judgmental curiosity about other cultures. Mental health workers are encouraged to seek cultural knowledge in an appropriate way, tolerate ambiguity and develop the ability to handle the stress of ambiguous situations. In addition, developing a family-sensitive practice, where family and community resources are viewed as partners in recovery as appropriate allow syncretism and innovation to take place. There are significant institutional barriers remaining to this in mental particularly the emphases on privacy, independence and the one-to-one relationship between consumer and professional.

Knowledge and action, developing evidence for an equity agenda

Speech given at the launch of a partnership between Monash University and Centre for Culture, Ethnicity and Health (CEH) April 29th 2015 and the celebration of CEH’s 21st birthday.

I would like to show my respect and acknowledge the traditional custodians of this land on which this launch takes place, the Wurundjeri-willam people of the Kulin Nation, their elders past and present. I’d also like to acknowledge our special guests: The Honorable Robin Scott – Minister for Multicultural Affairs/Minister for Finance, Phillip Vlahogiannis the Mayor of the City of Yarra, Chris Atlis the Deputy Chair of North Richmond Community Health (NRCH), Councillor Misha Coleman and Baraka Emmy, Youth Ambassador for Multicultural Health and Support Services. I’d also like to acknowledge: Professor Wendy Cross; CEO of the Centre for Culture Ethnicity and Health (CEH) Demos Krouskos; General Manager of CEH Michal Morris, representatives from the Department of Health and Human Services and other government departments, healthcare service partners, clients, NRCH and CEH staff and community members.

It’s an honour to take up this joint appointment between the Centre for Culture Ethnicity and Health (CEH) and Monash School of Nursing and Midwifery, there are some wonderful synergies which allow both organisations to jointly advance a shared goal of equity and quality in health care for our communities, and in particular for people from refugee and migrant background communities. As most of you know, Victoria is the most culturally diverse state in Australia, with almost a quarter of our population born overseas. Victorians come from over 230 countries, speak over 200 languages and follow more than 135 different faiths. This role is an acknowledgement of this diversity, and the need for health and social services that are equitable, culturally responsive and evidence based.

The gap this role addresses

Monash takes its name from Sir John Monash:  an Australian, well known for being both a scholar and a man of action. He is quoted as having said “…equip yourself for life, not solely for your own benefit but for the benefit of the whole community.” I am excited about the ways in which this new role can both strengthen CEH’s leadership and expertise in culture and health; and strengthen Monash’s position as a provider of dynamic and collaborative research-led education. In thinking about the world of the university and the world of practice, the words of Abu Bakr resonate: “Without knowledge, action is useless and knowledge without action is futile.”

What we have in common

I believe this relationship combines knowledge and action which will benefit both organisations and their staff, but even more importantly the communities that we are all here to serve. Key to this partnership success is the generous and collaborative spirit with which the leadership of both organisations have come together and which bodes well for the future. What we have in common as organisations is:

  • Firstly, a commitment to responsive clinical models of care that consider social determinants of health. In a world where health is increasingly industrialised and individualised, both Monash and CEH affirm the importance of communities in a healthy society
  • Secondly, both organisations aim to develop a health and social workforce that can work effectively and safely with our communities. CEH and NRCH know how to work with communities, having expertise in advocacy and community-building roles advocacy and community-building roles to contribute to healthier social and physical environments. Monash know how to educate and inspire practitioners to link their practical knowledge to the centuries of research and scholarship that universities are custodians of around the world.
  • Thirdly, the two organisations aim to keep clients and their families at the centre of care, to recognise that despite all our professional expertise it is the recipient of care who ultimately determines successful outcomes.
  • Fourthly, the organisations seek a system of care that is both just and equitable – just as the university seeks truths that are universal while we research in the here and now, so too we need more than ever to maintain our ideal of a healthy society for all.
Dr Ruth De Souza, Professor Wendy Cross, Michal Morris, The Hon Robin Scott – Minister for Multicultural Affairs/Minister for Finance.
Dr Ruth De Souza, Professor Wendy Cross, Michal Morris, The Hon Robin Scott – Minister for Multicultural Affairs/Minister for Finance.

 Benefits of the relationship

I forsee a number of benefits for both organisations from this role. CEH has a distinguished track record in supporting health and social practitioners to respond sensitively and effectively to the issues faced by people people from refugee and migrant backgrounds , and this will be of benefit to students and staff at Monash as we prepare a rapidly changing workforce for a  rapidly changing workplace.

Monash has an international reputation for high quality and research and education, and CEH will use this expertise to advocate and campaign for change. CEH will be exposed to the university’s dynamic intellectual environment and its knowledge of global currents in cultural research and health research, strengthening its expertise in cultural competence and giving the organisation a platform to lead a much needed translational research agenda.

There have been enormous amounts of work undertaken internationally in my own research areas of cultural safety and cultural competence. Yet there is still so much more to be known about what works and how institutions and practitioners can respond to our changing world. The relationship with Monash will provide both organisations with an opportunity for research output that is grounded, that can be disseminated both in academic settings such as conferences, academic  books and journals, into the sphere of practice and to a range of audiences. The relationship allows for a reciprocal re- examination of priorities and practices about equity in health in research, teaching, and service delivery. I am excited to be working in this dynamic partnership and look forward to helping the partners in their quest for an innovative, resilient and responsive health system for our changing world.

To conclude, I am grateful to the leadership that has made this role and partnership happen, my profound thanks go to the CEO of CEH Demos Krouskous, GM Michal Morris, Professor Wendy Cross, all the magnificent staff here at Monash and at CEH who have made me so very very welcome and lastly to all of you here who have made time to provide your presence and support.

Cultural safety in Aotearoa New Zealand 2nd Edition

Very excited about the 2nd Edition of Cultural safety in Aotearoa New Zealand being published by Cambridge Press in December 2015.

I’ve contributed two chapters and I have excerpted the introduction of each chapter below:

8. Navigating the ethical in cultural safety

Caring is an ethical activity with a deep moral commitment that relies on a trusting relationship (Holstein & Mitzen, 2001). Health professionals are expected to be caring, skilful, and knowledgeable providers of appropriate and effective care to vulnerable people. Through universal services they are expected to meet the needs of both individual clients and broader communities, which are activities requiring sensitivity and responsiveness. In an increasingly complex globalised world, ethical reflection is required so that practitioners can recognise plurality: in illness explanations; in treatment systems; in the varying roles of family/whanau or community in decision making; and in the range of values around interventions and outcomes. To work effectively in multiple contexts, practitioners must be able to morally locate their practice in both historical legacies of their institutional world and the diversifying community environment. This chapter examines the frameworks that health professionals can use for cross-cultural interactions.I then explore how they can select the most appropriate one depending on the person or group being cared for.

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13. Culturally safe care for ethnically and religiously diverse communities

Cultural safety is borne from a specific challenge from indigenous nurses to Western healthcare systems.It is increasingly being developed by scholars and practitioners as a methodological imperative toward universal health care in a culturally diverse world. The extension of cultural safety, outside an indigenous context, reflects two issues: a theoretical concern with the culture of healthcare systems and the pragmatic challenges of competently caring for ethnically and religiously diverse communities. As discussed throughout this book, the term ‘culture’ covers an enormous domain and a precise definition is not straightforward. For the Nursing Council of New Zealand (‘the Nursing Council’) (2009), for example, ‘culture includes, but is not restricted to, age or generation; gender; sexual orientation; occupation and socioeconomic status; ethnic origin or migrant experience; religious or spiritual belief; and disability’.

In an attempt at a precise two-page definition, Gayatri Chakravorty Spivak (2006, p. 359), captures the reflexive orientation required to grasp how the term ‘culture’ works:

Every definition or description of culture comes from the cultural assumptions of the investigator. Euro-US academic culture… is so widespread and powerful that it is thought of as transparent and capable of reporting on all cultures. […] Cultural information should be received proactively, as always open-ended, always susceptible to a changed understanding. […] Culture is a package of largely unacknowledged assumptions, loosely held by a loosely outlined group of people, mapping negotiations between the sacred and the profane, and the relationship between the sexes.

Spivak’s discussion of the sacred and the profane links culture to the more formal institution of religion, which has historically provided the main discourse for discussion of cultural difference. Particularly important for cultural safety is her discussion of Euro-US academic culture, a ‘culture of no culture’, which has a specific lineage in the sciences of European Protestantantism. Through much of the 19th century, for example, compatibility with Christianity was largely assumed and required in scientific and medical knowledge, even as scientists began to remove explicit Christian references from their literature. This historical perspective helps us see how the technoscientific world of the healthcare system, and those of us in secular education, are working in the legacy of white Christian ideals, where the presence of other cultures becomes a ‘problem’ requiring ‘solutions’. Cultural safety, however, attempts to locate the problem where change can be achieved in the healthcare system itself.

 

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Other contributors include: Irihapeti Ramsden, Liz Banks, Maureen Kelly, Elaine Papps, Rachel Vernon, Denise Wilson, Riripeti Haretuku, Deb Spence, Robin Kearns, Isabel Dyck, Ruth Crawford, Fran Richardson, Rosemary McEldowney, Thelma Puckey, Katarina Jean Te Huia, Liz Kiata, Ngaire Kerse, Sallie Greenwood and Huhana Hickey.

Book cover

Learning to listen: Mental health and migration for CALD communities

In Victoria the goal of the Victorian Mental Health Reform Strategy 2009-2019 is to achieve better social and economic outcomes for people with mental illness, their families, carers and friends. Specifically Reform Area 6 outlines areas for reducing inequalities. The Cultural Diversity Plan for Victoria’s Specialist Mental Health Services, 2006-2010 suggests that achieving more culturally responsive services for culturally and linguistically diverse (CALD) and refugee communities is a clear priority given that:

  • Victoria has a diverse population with 24 per cent of Victorians being born overseas.
  • A third of this group come from non-English speaking countries.
  • Culturally and linguistically diverse (CALD) groups often have poorer mental health outcomes compared to Australian-born people, because they tend to present to services when their illness is more severe and therefore are also likely to experience higher rates of involuntary treatment.
  • There are sub-groups articularly refugees and older people who are at risk of developing a mental health problem.
  • Each year Victoria accepts over 3,500 humanitarian entrants (refugees and asylum seekers).
  • Victoria’s CALD population is increasingly being dispersed across the state. in regional and rural areas which requires primary health and mental health services provide culturally appropriate care.
  • Almost half of all CALD Victorians report having experienced some type of discrimination based on their ethnicity or nationality.
  • Experiences of discrimination are associated with depression, stress, anxiety and problematic substance use.

Better mental health outcomes for people of CALD backgrounds must include:

  • Strategies to promote social inclusion;
  • Acceptance of cultural diversity;
  • Workforce development ie develop work practices and cultures in mental health services that support high quality, effective, consumer-focused and carer-inclusive care;
  • Improving access to culturally competent mental health care at earlier stages of illness;
  • Enhancing the capacity of primary health services and workers in CALD community settings to identify, respond earlier to, and refer people with emerging mental health problems;
  • Enhancing mental health literacy and reduce stigma among refugee and asylum seeker groups;
  • Provide mental health literacy training to multicultural, ethno-specific and refugee agencies to improve their understanding of mental illness, so that workers in these agencies can better navigate the mental health service system on behalf of CALD consumers and;
  • Encourage practical partnerships between these agencies and specialist mental health services to facilitate culturally-specific input into clinical treatment and psychosocial rehabilitation plans;
  • Address language needs of CALD clients in specialist mental health services and address supply of interpreters  and promote client and carer awareness of language services;
  • Build on the work of Victorian Transcultural Mental Health and the Action on Disability within Ethnic Communities (ADEC) to improve training.

Migrating minds

In the last week of March 2015 I was honoured to be one of six panelists ranging from consumers, carers, filmmakers, and mental health practitioners to be part of a panel at an event called Migrating Minds: A forum on mental health within Culturally and Linguistically Diverse (CALD) migrant communities.The panel was organised by Colourfest in partnership with Victorian Transcultural Mental Health and held at the State Library of Victoria (SLV). Colourfest celebrates films about diaspora and migrant experiences and shares them with the broader community through free events, professional development/training, distributing films and producing resources.

What was especially wonderful about Colourfest was that consumers and carers were central to the event and got to tell their own stories in the films at the start and in the panel discussion at the end. The event began with seven short films which were stories told by people with a personal experience of mental health issues and perspectives of relatives/carers. Five of the short films were produced by Multicultural Mental Health Australia (MHiMA) and Victorian Transcultural Mental Health. There was also an international short film produced by a second-generation Vietnamese-American who shares their experiences with Depression and Post-Traumatic Stress Disorder.

These fabulous examples of cross-sectoral collaboration were evident in the partnership between Mental Health in Multicultural Australia (MHiMA) in conjunction with the Australian Centre for the Moving Image (ACMI) to produce Finding our way. This unique project focused on migrant and refugee stories where the personal stories of people living with emotional and mental health issues who were negotiating migrancy. Managed by Victorian Transcultural Mental Health (VTMH), St Vincent’s Hospital, Melbourne and the Global and Cultural Mental Health Unit at the University of Melbourne. Erminia Colucci & Susan McDonough coordinated the project for MHiMA. We watched The Visual Conductor by Maria. A story about family expectations, taking charge and staying well involving art, personal goals and play. We also viewed Dear Self by Akeemi, which was about childhood memories, moving to a new country, feelings of isolation and efforts to connect including original drawings and paintings. Both Maria Dimopoulos  and Akeemi from the Finding Our Way film project were also on the panel.

The Our Voices project told the stories of carers from refugee and migrant backgrounds through five short films, showing a poignant insight into the lives of carers from migrant and refugee backgrounds. At the Colourfest panel we were fortunate to view Kevser‘s story. Kevser arrived from Turkey in the late 60’s with her husband and is the primary carer for her daughter. What was extraordinary about this film and the other four (from Afghani, Egyptian, Somali and Vietnamese communities) were the common challenges they faced in finding culturally sensitive and culturally-responsive mental health care and support. The aim of the forum was to help healthcare practitioners, community workers and the general population to understand some of the needs of the CALD community and the films were a powerful mechanism for leading the audience to empathise with the experiences of families. Leyla Altinkaya spoke on behalf of her mother, Kevser on the panel. Our other panelists were Munira Yusuf , a young person speaking from a youth perspective on their lived experiences with mental health issues and David Belasic: A psychologist based at Drummond Street Services. He has a strong interest in community psychology and queer mental health.

Me answering a question from Pham Phu Thanh Hang Colourfest Melbourne Coordinator. Also in the shot from left to right, fellow panellists Akeemi, Maria Dimopoulos, Munira Yusuf and David Belasic.
Me answering a question from Pham Phu Thanh Hang Colourfest Melbourne Coordinator. Also in the shot from left to right, fellow panellists Akeemi, Maria Dimopoulos, Munira Yusuf and David Belasic.

One of the priorities of The Framework for Mental Health in Multicultural Australia: Towards culturally inclusive service delivery is that services evaluate their cultural responsiveness and develop action plans to enhance their delivery of services to CALD communities as part of core business. Central to this responsiveness is having processes where consumers, carers and family members can have a say in the planning, development, delivery and evaluation of services. Particularly important given that CALD consumer and carer participation lags behind mainstream participation. Hence, the importance of this event which placed the experiences of consumers and carers at the forefront.

Cultural competence in mental health emphasises the attributes of the service provider and outcomes of the cross-cultural encounter rather than the unfamiliar culture of the consumer/carer. I love the key elements of cultural competence identified in the Cultural diversity plan for Victoria’s specialist mental health services 2006-2010:

  • Respectful and non-judgemental curiosity about other cultures, and the ability to seek cultural knowledge in an appropriate way;
  • Tolerance of ambiguity and ability to handle the stress of ambiguous situations;
  • Readiness to adapt behaviours and communicative conventions for intercultural communication.

What’s lovely about this list is that it does not constitute a recipe or tick box that can be memorised and then deployed in every intercultural encounter. These qualities are about how we developing a capacity for being in relationship with other people when we cannot assume common ground (which is really kinda always).  I believe that watching the films provided a way to facilitate the beginnings of such a journey..

I am grateful to all those who made the films happen and for making visible the experiences of CALD consumers and carers. A grateful thanks to Gary Paramanathan and Pham Phu Thanh Hang Colourfest Melbourne Coordinator for the opportunity to be part of this wonderful panel.

Note that the Victorian Mental Health Reform Strategy 2009-2019 defines Cultural and linguistic diversity as:

the diversity of society in terms of cultural identity, nationality, ethnicity, language, and increasingly faith. Individuals from a CALD background are those who identify as having a specific cultural or linguistic affiliation by virtue of their place of birth, ancestry, ethnic origin, religion, preferred language, language(s) spoken at home, or because of their parents’ identification on a similar basis. CALD does not refer to an homogenous group of people, but rather to a range of cultural and language group communities.