Tag Archive for: equity

VALA Libraries, Technology and the Future invited my fabulous colleague from Melbourne University Fiona Tweedie and I to participate in a webinar discussion as part of Open Access Week. The webinar was hosted by VALA President, Katie HadenVALA are an independent Australian based not-for-profit organisation that aim to promote the use and understanding of information technology within libraries and the broader information sector.

Is “Open” always “Equitable”?

The theme for Open Access Week for 2018 is ‘Designing equitable foundations for open knowledge.’ But open systems aren’t always set to a default of ‘inclusive’, and there are important questions that need to be raised around prioritisation of voices, addressing perpetual conscious and unconscious bias, and who is excluded from discussions and decisions surrounding information and data access. There are also issues of the sometimes-competing pressures to move toward both increased openness and greater privacy, the latter issue having much currency in the health domain (and more broadly) at present.

  • If we default to inclusive, what does that look like?
  • How do we address conscious and unconscious bias?
  • How do we prioritise voices, identify who is included and/or excluded from discussions?
  • How do we address the pressure to move toward both increased openness and greater privacy, particularly in the area of health data?

You can download the mp4 file of the webinar, or read a summary of what I had to say below.

Most of what I have learned about how to be a good nurse has come from the consumers I have worked with in my clinical practice. I think the people that live most closely to a phenomenon have a unique microscopic vantage point and that as a researcher and clinician, complementing this lived experience with a telescopic view allows us to see both the big picture and the lived experience. Similarly, my experience of innovations in health have been consumer driven: the initiation of text reminders in a health organisation I used to work for because newly arrived Sudanese women asked for it; health promotion activities that included fun and community building, because Pasifika people in South Auckland wanted something more communal. So I am interested in the emergence of data and technology as democratising enablers for groups that experience marginalisation. Consumers with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) who challenged the influential £5m publicly funded PACE trial which shaped research, treatment pathways and medical and public attitudes towards the illness are an example of how making data open and transparent can be transformative.

The PACE trial found that Cognitive Behavioural therapy (CBT) and Graded Exercise Therapy (GET) achieved 22 percent recovery rates (rather than just improvement rates) as opposed to only seven or eight percent in the control groups who did not engage in CBT and GET. The findings contradicted with the experiences of consumers, who suffered debilitating exhaustion after activities of daily living. A five year struggle by Australian Alem Matthees and supported by many scientists around the world who doubted the study’s conclusion resulted in Queen Mary University of London releasing the original data under the UK Freedom of information (FOI) Act at a cost of £250,000. When challenged about the distress that this had caused patients with ME/CFS the researchers claimed to be concerned about the ethics of sharing the data. However, Geraghty (2017) points out:

did PACE trial participants really ask for scientific data not to
be shared, or did participants simply ask that no personal identifiable information (PIIs) be disclosed?

Subsequent reanalysis showed recovery rates had been inflated  and that the recovery rates in the CBT and GET groups were not significantly higher than in the group that received specialist medical care alone. One of the strategies for addressing the lack of transparency in science is to make data open (particularly if another £5m is unavailable to reproduce the study), sharing data, protocols, and findings in repositories that can be accessed and evaluated by other researchers and the public in order to enhance the integrity of research. Funding bodies are now increasingly making data-sharing a requirement of any research grant funding.

https://forbetterscience.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/

By Leonid Schneider

This story captures the value proposition of making health data open, it can: hold healthcare organizations/ providers accountable for treatment outcomes; help patients make informed choices from options available to them (shared decision making); improve the efficiency and cost-effectiveness of healthcare delivery; improve treatment outcomes by using open data to make the results of different treatments, healthcare organizations, and providers’ work more transparent; be used to educate patients and their families and make healthcare institutions more responsive; fuel new healthcare companies and initiatives, and to spur innovation in the broader economy (Verhulst et al, 2014).

The growing philosophy of open data which is about democratising data and enabling the sharing of datasets has been accompanied by other data related trends in health including: big data-large linked data from electronic patient records; streams of real-time geo-located health data collected by personal wearable devices etc; and new data sources from non-traditional sources eg social and environmental data (Kostkova, 2016). All of which can be managed through computation and algorithmic analysis. Arguments for open data in health include that because tax payers pay for its collection it should be available to them and that the value of data comes from being used by interpreting, analysing and linking it (Verhulst et al., 2014).

According to the open data handbook, open data refers to:

A piece of data or content is open if anyone is free to use, reuse, and redistribute it — subject only, at most, to the requirement to attribute and/or share-alike.

Usually it has three main features:

Availability and Access: the data must be available as a whole and at no more than a reasonable reproduction cost, preferably by downloading over the internet. The data must be available in a convenient and modifiable form.

Reuse and Redistribution: the data must be provided under terms that permit reuse and redistribution including the intermixing with other datasets.

Universal Participation: everyone must be able to use, reuse and redistribute – there should be no discrimination against fields of endeavour or against persons or groups.

Central to which is the idea of interoperability, whereby diverse systems and organizations can work together (inter-operate) or intermix different datasets.

Here are two useful examples of open data being used for the common good. The first concerns statins, which are widely prescribed and cost more than £400m out of a total drug budget of £12.7 billion pounds in England. Mastodon C (data scientists and engineers), The Open Data Institute (ODI) and Ben Goldacre analyzed how statins were prescribed across England and found widespread geographic variations. Some GPs were prescribing the patented statins which cost more than 20 times the cost of generic statins when generics worked just as well. The team suggested that changing prescription patterns could result in savings of more than 1 billion pounds per year. Another study showed how asthma hotspots could be tracked and used to help people with asthma problems to avoid places that would trigger their asthma. Participants were issued with a small cap that fit on a standard inhaler, when the inhaler was used, the cap recorded the time and location, using GPS circuitry. The data was captured over long periods of time and aggregated with anonymized data across multiple patients to times and places where breathing is difficult, that could help other patients improve their condition(Verhulst et al, 2014).

Linking and analysing data sets can occur across the spectrum of health care from clinical decision support, to clinical care, across the health system, to population health and health research. However, while the benefits are clear, there are significant issues at the individual and population level. In this tech utopia there’s an assumption of data literacy, that people who are given more information about their health will be able to act on this information in order to better their health. Secondly, data collected for seemingly beneficial purposes can impact on individuals and communities in unexpected ways, for example when data sets are combined and  adapted for highly invasive research (Zook et al, 2017). Biases against groups that experience poor health outcomes can also be reproduced depending on what type of data is collected and with what purpose (Faife, 2018).

The concern with how data might be deployed and who it might serve is echoed by Virginia Eubanks Associate Professor of Political Science at the University at Albany, SUNY. Her book gives examples of how data have been misused in contexts including criminal justice, welfare and child services, exacerbating inequalities and causing harm. Frank Pasquale in a critique of big data and automated judgement has identified how corporations have compiled data and created portraits using decisions that are neither neutral or technical. He and others call for transparency, accountability and the protection of citizen’s rights by ensuring algorithmic judgements are fair, nondiscriminatory, and open to criticism. However, it is difficult for people from marginalised groups to challenge or interrogate systems or seek redress if harmed for example through statistical aggregation, so fostering dissent and collaboration by public authorities is necessary. Groups with the worst health outcomes have limited access to interventions or the determinants of health to begin with. So, it’s important to ensure that policy and regulation drive structural changes rather than embedding existing discrimination that exposes minority groups to increased surveillance and marginalisation (Redden, 2018).

The advent of Australia’s A$18.5 million national facial recognition system, the National Facial Biometric Matching Capability will allow federal and state governments access to access passport, visa, citizenship, and driver licence images to rapidly match pictures of people captured on CCTV “to identify suspects or victims of terrorist or other criminal activity, and help to protect Australians from identity crime“. The Capability is made up of two parts, the first comprises a Face Verification Service (FVS) which is already operational and allows for a one-to-one image-based match of a person’s photo against a government record. The second part is expected to come online this year and is the Face Identification Service (FIS), a one-to-many, image match of an unknown person against multiple government records to help establish their identity. Critics are concerned at the false positives that similar technologies have found elsewhere like the US and their failure to prevent mass shootings.

Me checking out the biometric mirror at Uni Melb

Me checking out the biometric mirror an artificial intelligence (AI) system to detect and display people’s personality traits and physical attractiveness based solely on a photo of their face. Project led by Dr Niels Wouters from the Centre for Social Natural User Interfaces (SocialNUI) and Science Gallery Melbourne at University of Melbourne.

Context is also important when considering secondary use of data. Indigenous voices like Kukutai observe that openness is not only a cultural issue but a political one, which has the potential to reinforce discourses of deficit. Privacy also has nuance here, public sharing does not indicate acceptance of subsequent use. Group privacy is also important for those groups who are on the receiving end of discriminatory data-driven policies. Open data can be used to improve the health and well being of individuals and communities. The efficiencies and effectiveness of health services can also be improved. Open data can also be used to challenge exclusionary policies and practices, however consideration must be given to digital literacy, privacy and how conditions of inequity might be exacerbated. Importantly, ensuring that structural changes occur that increase the access for all people to the determinants of health.

References

  • Eubanks V. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. St. Martin’s Press, 2018.
  • Faife C. The government wants your medical data. The Outline, https://theoutline.com/post/4754/the-government-wants-your-medical-data (2018, accessed 16 October 2018).
  • Ferryman K, Pitcan M. Fairness in Precision Medicine. Data and Society, https://datasociety.net/wp-content/uploads/2018/02/Data.Society.Fairness.In_.Precision.Medicine.Feb2018.FINAL-2.26.18.pdf (2018).
  • González-Bailón S. Social science in the era of big data. POI 2013; 5: 147–160.
  • Kostkova P, Brewer H, de Lusignan S, et al. Who Owns the Data? Open Data for Healthcare. Front Public Health 2016; 4: 7.
  • Kowal E, Meyers T, Raikhel E, et al. The open question: medical anthropology and open access. Issues 2015; 5: 2.
  • Krumholz HM, Waldstreicher J. The Yale Open Data Access (YODA) project—a mechanism for data sharing. N Engl J Med 2016; 375: 403–405.
  • Kukutai T, Taylor J. Data sovereignty for indigenous peoples:current practice and future needs. In: Kukutai T TaylorJ , ed. Indigenous Data Sovereignty: Toward an Agenda. Acton,Australia: ANU Press; 2016: 1–22
  • –Lubet S. How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma. The Conversation, 2017, http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 (2017, accessed 22 October 2018).
  • –Pitcan M. Technology’s Impact on Infrastructure is a Health Concern. Data & Society: Points, https://points.datasociety.net/technologys-impact-on-infrastructure-is-a-health-concern-6f1ffdf46016 (2018, accessed 16 October 2018).
  • –Redden J. The Harm That Data Do. Scientific American, 2018, https://www.scientificamerican.com/article/the-harm-that-data-do/ (2018, accessed 22 October 2018).
  • –Tennant M, Dyson K, Kruger E. Calling for open access to Australia’s oral health data sets. Croakey, https://croakey.org/calling-for-open-access-to-australias-oral-health-data-sets/ (2014, accessed 15 October 2018).
  • –Verhulst S, Noveck BS, Caplan R, et al. The Open Data Era in Health and Social Care: A blueprint for the National Health Service (NHS England). http://www.thegovlab.org/static/files/publications/nhs-full-report.pdf (May 2014).
  • –Yurkiewicz I. Paper Trails: Living and Dying With Fragmented Medical Records. Undark, https://undark.org/article/medical-records-fragmentation-health-care/ (2018, accessed 23 October 2018).
  • –Zook M, Barocas S, Crawford K, et al. Ten simple rules for responsible big data research. PLoS Comput Biol 2017; 13: e1005399.

I had a chat with Ben Rodin from The Australian Nursing and Midwifery Journal . I said a few things. You can read more

“All bodies are not treated the same and we’re not affected by the virus in the same way… how we do healthcare actually matters… There’s some arguments that the failure to care, and poor quality [of care], are actually embedded in the structures and processes of the healthcare system.”

I wrote a piece for the Spring 2018 edition (Issue 23) of the Hive (the Australian College of Nursing’s quarterly publication). Cite as:DeSouza, R. (2018). Is it enough? :Why we need more than diversity in nursing. The Hive (23, 14-15). You can also download a pdf of the article for your own personal use.

Diversity is a hopeful, positive and celebratory idea, it generates more happiness than words like inequity, racism and privilege. It feels good for a large number of people precisely because it is depoliticized (Hall & Fields, 2013). It does not demand accountability. It does not demand transformational change of our minds or our environment, but requests that we continue to put up with difference or to tolerate it (Bell & Hartmann, 2007). What does it mean for our profession to be diverse? And is it enough?

Is it enough, when we have a yawning chasm of health inequity and disparity, of deaths in custody, of punitive policy aimed at Aboriginal Australians? Is it enough, in an era of devastating Islamophobia and racism enabled by nationalist right wing xenophobia? Is it enough, when politicians challenge group-based rights and argue that they undermine social cohesion and “our way of life”, maligning and scapegoating already vulnerable groups like African youth. Is it enough, when media only catapult the spectacular and exceptional into our view. Is it enough, when the entire world is condemning Australia’s abhorrent offshore policy of deterrence and detention. Yes, we need to recognise difference, but we must also understand how differences are connected to inequalities. As Mohanty observes: “diversity by passes power as well as history to suggest a harmonious and empty pluralism” (Mohanty, 2003, p. 193).

We might be ticking the diversity boxes and celebrating diversity — whether in University brochures and websites or on Harmony Day — but do our combined activities address health disparities? The problems of inequity and disparity are bigger than us but we can be accountable for the parts we play in larger political struggles. For a politics of equity, we also need to consider race, disability, ethnicity, class, gender, sexuality, and religion and integrate these into our analyses of our social world. We need to expand the frames we use to look beyond individual behaviour and to consider social and systemic issues, and call for systematic interventions to address inequity. ‘Celebrating’ cultural difference isn’t the same as action, as fighting for justice. As (Perron, 2013) notes, nurses can be both caring for individuals and advocating for the collective rights to equitable care, they aren’t mutually exclusive.

Diversity assumes that care is still a neutral technical activity
As nursing emerged from being a class of handmaidens to the medical system to the dynamic profession it is today, we have understood it to become an intellectual, cultural and contextual activity. This means it is also a political activity (De Souza, 2014). Nursing is connected to systems of power and privilege. Nurses and clients bring multiple ways of being in the world into the world of care and yet we only privilege some of these ways of being. Iris Marion Young describes oppression as being “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, 1990, p. 41). There continue to be clear links between institutional bias in health care systems and health disparities (Hall & Fields, 2013). Let’s ask ourselves what practices we enact every day that contribute to inequity?

Diversity maintains whiteness at its core
In diversity talk in nursing there’s an assumed white centre with difference added. White people are conceived as the hosts and people of color viewed as guests and the perspectives of Indigenous people are erased. Allen (2006, pp. 1–2) calls this the ‘white supremacy’ of nursing education: an assimilationist agenda that converts diverse groups people into a singular kind of nurse, which can then add ‘others’ into the mainstream to create a multicultural environment. But, this addition reinforces rather than displaces whiteness from the centre of structures and processes of educational or clinical institutions (p.66). It’s important that we focus on whether nurses reflect the communities that they serve. But representation in the workforce doesn’t mean that the people who are culturally different have a voice in the corridors of power. There are questions also about “who’s at the decision-making table and who’s not. And what’s on the agenda and what’s not” (Brian Raymond, 2016).

Diversity focuses on sensitivity and respect rather than on the social and historical
Race and racism are determinants of health inequities (Krieger, 2014) therefore it follows that a key area where nurses could intervene is to address discrimination. It is inadequate for us to provide individualised sensitive and respectful care while ignoring the historical and structural conditions that shape health and healthcare. As nurses, we understand more than most that life is an uneven playing field – we need to bring this knowledge to the way we work as a profession. Cultural sensitivity and awareness tend to assume that racism is “out there”, rather than something that is also enacted within healthcare systems. Our claims to colorblindness reinforce the problem, as” treating people the same” doesn’t take into account their differing needs, which is one definition of what care is.

Spotted at my local market

Creating a meaningful diverse and multicultural nursing profession
in an era where both patient populations and the nursing workforce are becoming more diverse, where are the spaces for nurses to talk about both institutional and societal racism and how they impact on care? How can nurses broaden their focus from the micro-level to see the big picture, especially when they labor in unstable and under-resourced working environments (Allan, 2017)? Nurse educators must confront our own resistance to teaching about race and racism (Bond & Others, 2017) – the recent debates about the inclusion of cultural safety into the Nursing and Midwifery Codes of Conduct reflect now far we have to go. Our curricula must more explicitly embed anticolonial and intersectional perspectives into learning experiences in order to prepare nurses for not only understanding how structural inequities affect health but also for the skills to counter them (Blanchet Garneau, Browne, & Varcoe, 2016; Thorne, 2017; Varcoe, Browne, & Cender, 2014). In Australia, the Indigenous Health Curriculum Framework developed by the Committee of Deans of Australian Medical Schools, recognised the critical need to teach students about racism. In particular, it asks us to see the connection between history and current health outcomes; to be able to identify features of overt, subtle and structural racism or discrimination and to be able to address and help resolve these occurrences.

Viewing nursing as a neutral, universal activity where appreciation, sensitivity and respect are adequate, prevents us from considering nursing as a political activity where power is at play. Conversely, embedding an understanding of the historical, structural and systemic factors that shape health, into our practice will allow us to create a meaningfully inclusive – and more caring – profession. This however, requires courage, commitment and accountability. Do we have it?

References

Allan, H. (2017). Editorial: Ethnocentrism and racism in nursing: reflections on the Brexit vote. Journal of Clinical Nursing, 26(9-10), 1149–1151.
Allen, D. G. (2006). Whiteness and difference in nursing. Nursing Philosophy: An International Journal for Healthcare Professionals, 7(2), 65–78.
Bell, J. M., & Hartmann, D. (2007). Diversity in Everyday Discourse: The Cultural Ambiguities and Consequences of “Happy Talk.” American Sociological Review, 72(6), 895–914.
Blanchet Garneau, A., Browne, A. J., & Varcoe, C. (2016). Integrating social justice in health care curriculum: Drawing on antiracist approaches toward a critical antidiscriminatory pedagogy for nursing. Sydney: International Critical Perspectives in Nursing and Healthcare. Google Scholar. Retrieved from http://sydney.edu.au/nursing/pdfs/critical-perspectives/blanchet-garneau-browne-varcoe-integrating-social-justice-2.pdf
Bond, C., & Others. (2017). Race and racism: Keynote presentation: Race is real and so is racism-making the case for teaching race in indigenous health curriculum. LIME Good Practice Case Studies Volume 4, 5.
Brian Raymond, M. P. H. (2016, August 2). How Racism Makes People Sick: A Conversation with Camara Phyllis Jones, MD, MPH, PhD | Kaiser Permanente Institute for Health Policy. Retrieved August 17, 2018, from https://www.kpihp.org/how-racism-makes-people-sick-a-conversation-with-camara-phyllis-jones-md-mph-phd/
De Souza, R. (2014). What does it mean to be political? Retrieved August 21, 2018, from http://ruthdesouza.dreamhosters.com/2014/08/03/what-does-it-mean-to-be-political/
Hall, J. M., & Fields, B. (2013). Continuing the conversation in nursing on race and racism. Nursing Outlook, 61(3), 164–173.
Krieger, N. (2014). Discrimination and health inequities. International Journal of Health Services: Planning, Administration, Evaluation, 44(4), 643–710.
Mohanty, C. T. (2003). “Under Western Eyes” Revisited: Feminist Solidarity through Anticapitalist Struggles. Signs: Journal of Women in Culture and Society, 28(2), 499–535.
Perron, A. (2013). Nursing as “disobedient” practice: care of the nurse’s self, parrhesia, and the dismantling of a baseless paradox. Nursing Philosophy: An International Journal for Healthcare Professionals, 14(3), 154–167.
Thorne, S. (2017). Isn’t it high time we talked openly about racism? Nursing Inquiry, 24(4). https://doi.org/10.1111/nin.12219
Varcoe, C., Browne, A., & Cender, L. (2014). Promoting social justice and equity by practicing nursing to address structural inequities and structural violence. Philosophies and Practices of Emancipatory Nursing: Social Justice as Praxis, Eds PN Kagan, MC Smith and PL Chinn, 266–285.
Young, I. M. (1990). Throwing Like a Girl and Other Essays in Feminist Philosophy and Social Theory. Monograph Collection (Matt – Pseudo).

The ocean is what we have in common: Relationships between indigenous and migrant people.

This piece was previously published in the Goanet Reader: Mon, 30 Nov 2009

Legend has it that Lord Parashuram (Lord Vishnu’s sixth incarnation) shot an arrow into the Arabian Sea from a mountain peak. The arrow hit Baannaavali (Benaulim) and made the sea recede, reclaiming the land of Goa. A similar story about land being fished from the sea by a God is told in Aotearoa, New Zealand, where Maui dropped his magic fish hook over the side of his boat (waka) in the Pacific Ocean and pulled up Te Ika a Maui (the fish of Maui), the North Island of New Zealand.

The first story comes from the place of my ancestors, Goa, in India and the second story comes from the place I now call home, Aotearoa, New Zealand. Both stories highlight the divine origins of these lands and the significance of the sea, as my friend Karlo Mila says “The ocean is another source of sustenance, connection and identity…. It is the all encompassing and inclusive metaphor of the sea. No matter how much we try to divide her up and mark her territory, she eludes us with her ever-moving expansiveness. The ocean is what we have in common.”

This piece for Goanet Reader is an attempt to create some engagement and discussion among the Goan diaspora about the relationships we have with indigenous and settler communities in the countries we have migrated to, and to ask, what our responsibilities and positions are as a group implicated in colonial processes?

My life has been shaped by three versions of colonialism: German, Portuguese and British, and continues to be shaped by colonialism’s continuing effects in the white settler nation of Aotearoa/New Zealand. Diasporic Goans have frequently occupied what Pamila Gupta calls positions of “disquiet” or uneasiness within various colonial hierarchies. For me, this has involved trying to understand what being a Goan means, far away from Goa and to understand the impact of colonisation.

I was born in Tanzania, brought up in Kenya and am now resident of Aotearoa/New Zealand with a commitment to social justice and decolonising projects. What disquieting position do I occupy here?

Both sets of my grandparents migrated to Tanganyika in the early part of the 20th Century. Tanganyika was a German colony from 1880 to 1919, which became a British trust territory from 1919 to 1961. Tanganyika became Tanzania after forming a union with Zanzibar in 1964.

On my father’s side, my great-grandfather and grandfather had already worked in Burma because of the lack of employment opportunities in Goa. Then when my grandfather lost his job in the Great Depression, he took the opportunity to go to Tanzania and work.

Indians had been trading with Africa as far back as the first century AD. The British indentured labour scheme was operational and had replaced slave labour as a mechanism for accessing cheap and reliable labour for plantations and railway construction, contributing to the development of the Indian diaspora in the 19th and 20th century.

Large-scale migrations of Indians to Africa began with the construction of the great railway from Mombasa to Lake Victoria in Uganda in the late nineteenth century. Indians were recruited to run the railways after they were built, with Goans coming to dominate the colonial civil services.

Some 15,000 of the 16,000 men that worked on the railroads were Indian, recruited for their work ethic and competitiveness. Sadly, a quarter of them returned to India either dead or disabled. Asians who made up one percent of the total population originated from the Gujarat, Kutch, and Kathiawar regions of western India, Goa and Punjab and played significant roles as middlemen and skilled labourers in colonial Tanganyika.

During the Zanzibar Revolution of 1964, over 10,000 Asians were forced to migrate to the mainland as a result of violent attacks (also directed at Arabs), with many moving to Dar es Salaam. In the 1970s over 50,000 Asians left Tanzania.

President Nyerere issued the Arusha Declaration in February 1967, which called for egalitarianism, socialism, and self-reliance. He introduced a form of African socialism termed Ujamaa (“pulling together”). Factories and plantations were nationalized, and major investments were made in primary schools and health care.

My parents migrated to Kenya in 1966. The newly independent East African countries of Tanzania (1961), Uganda (1962), and Kenya (1963) moved toward Africanising their economies post-independence which led to many Asians finding themselves surplus to requirements and resulting in many Asians leaving East Africa, a period known as the ‘Exodus’.

A major crisis loomed for United Kingdom Prime Minister Harold Wilson’s government with legislation rushed through to prevent the entry into Britain of immigrants from East Africa. The Immigration Act of 1968 deprived Kenyan Asians of their automatic right to British citizenship and was retroactive, meaning that it deprived them of an already existing right.

Murad Rayani argues that the vulnerability of Asians was compounded by the ambiguity of their relationship with the sub-continent, and with Britain whose subjects Asians had become when brought to East Africa.

Enoch Powell’s now infamous speech followed where he asserted that letting immigrants into Britain would lead to “rivers of blood” flowing down British streets. The Immigration Act of 1971 further restricted citizenship to subjects of the Commonwealth who could trace their ancestry to the United Kingdom.

In 1972 Idi Amin gave Uganda’s 75,000 Asians 90 days to leave. My parents decided to migrate to New Zealand in 1975.

While ‘Asians’ (South Asians) were discriminated against in relationship to the British, they were relatively privileged in relationship to indigenous Africans. As Pamila Gupta says, Goans were viewed with uncertainty by both colonisers and the colonised. Yet, the Kenyan freedom struggle was supported by many Asians such as lawyers like A. Kapila and J.M. Nazareth, who represented detained people without trial provisions during the Mau Mau movement. Others like Pio Gama Pinto fought for Kenya’s freedom, and was assassinated. Joseph Zuzarte whose mother was Masai and father was from Goa rose to become Kenya’s Vice-President. There was Jawaharlal Rodrigues, a journalist and pro-independence fighter and many many more. In 1914, an East African Indian National Congress was established to encourage joint action with the indigenous African community against colonial powers.

In the two migrations I have described, Goans occupied a precarious position and much has been documented about this in the African context. However, what precarious place do Goans occupy now especially in white settler societies?

Sherene Razack describes a white settler society as: ” … one established by Europeans on non-European soil. Its origins lie in the dispossession and near extermination of Indigenous populations by the conquering Europeans. As it evolves, a white settler society continues to be structured by a racial hierarchy. In the national mythologies of such societies, it is believed that white people came first and that it is they who principally developed the land; Aboriginal peoples are presumed to be mostly dead or assimilated. European settlers thus become the original inhabitants and the group most entitled to the fruits of citizenship. A quintessential feature of white settler mythologies is therefore, the disavowal of conquest, genocide, slavery, and the exploitation of the labour of peoples of colour.”

I’d like to explore this issue in the context of Aotearoa/New Zealand where identities are hierarchically divided into three main social groups categories. First in the hierarchy are Pakeha New Zealanders or settlers of Anglo-Celtic background. The first European to arrive was Tasman in 1642, followed by Cook in 1769 with organised settlement following the signing of the Treaty of Waitangi in 1840. The second group are Maori, the indigenous people of New Zealand who are thought to have arrived from Hawaiki around 1300 AD and originated from South-East Asia. The third group are “migrants” visibly different Pacific Islanders or Asians make the largest groups within this category with growing numbers of Middle Eastern, Latin American and African communities. This latter group are not the first group that come to mind when the category of New Zealander is evoked and they are more likely to be thought of as “new” New Zealanders (especially Asians).

Increasingly, indigenous rights and increased migration from non-source countries have been seen as a threat to the white origins of the nation. While, the Maori translation of Te Tiriti o Waitangi may be acknowledged as the founding document of Aotearoa/New Zealand and enshrined in health and social policy, the extent to which policy ameliorates the harmful effects of colonisation remain minimal.

This can be seen in my field of health, where Maori ill health is directly correlated with colonisation. Maori nurses like Aroha Webby suggest that the Articles of the Treaty have been unfulfilled and the overall objective of the Treaty to protect Maori well-being therefore breached. This is evidenced in Article Two of the Treaty which guarantees tino rangatiratanga (self-determination) for Maori collectively and Article Three which guarantees equality and equity between Maori and other New Zealanders.

However, Maori don’t have autonomy in health policy and care delivery, and the disparities between Maori and non-Maori health status, point to neither equality nor equity being achieved for Maori. In addition, colonisation has led to the marginalising and dismantling of Maori mechanisms and processes for healing, educating, making laws, negotiating and meeting the everyday needs of whanau (family) and individuals.

So in addition to experiencing barriers to access and inclusion, Maori face threats to their sovereignty and self-determination. Issues such as legal ownership of resources, specific property rights and fiscal compensation are fundamental to Maori well being. Thus, the Treaty as a founding document has been poorly understood and adhered to by Pakeha or white settlers, in terms of recognising Maori sovereignty and land ownership.

Allen Bartley says that inter-cultural relationships have been traditionally shaped by New Zealand’s historical reliance on the United Kingdom and Ireland, leading to the foregrounding of Anglo-centric concerns. Discourses of a unified nation have been predicated on a core Pakeha New Zealand cultural group, with other groups existing outside the core such as Maori and migrants.

This monoculturalism began to be challenged by the increased prominence of Maori concerns during the 1970s over indigenous rights and the Treaty of Waitangi. The perception of a benign colonial history of New Zealand — an imperial exception to harsh rule — supplanted with a growing understanding that the Crown policies that were implemented with colonisation were not there to protect Maori interests despite the mythology of the unified nation with the best race relations in the world that attracted my family to New Zealand to settle.

So while countries such as Canada and Australia were developing multicultural policies, New Zealand was debating issues of indigeneity and the relationship with tangata whenua (Maori). More recently people from ethnic backgrounds have been asking whether a bicultural framework can contain multi-cultural aspirations. New Zealand has not developed a local response to cultural diversity (multiculturalism) that complements the bicultural (Maori and Pakeha) and Treaty of Waitangi initiatives that have occurred. However, many are worried that a multicultural agenda is a mechanism for silencing Maori and placating mainstream New Zealanders.

So is there a place/space for Goans in New Zealand? Or are we again occupying a disquieting space/place? According to Jacqui Leckie, one of the first Indians to arrive in New Zealand in 1853 was a Goan nicknamed ‘Black Peter’. Small numbers of Indians had been arriving since the 1800s, Lascars (Indian seamen) and Sepoys (Indian soldiers) arrived after deserting their British East India Company ships in the late 1800s.

The Indians that followed mainly came from Gujarat and Punjab, areas exposed to economic emigration. Indians were considered British subjects and could enter New Zealand freely until the Immigration Restriction Act (1899) came into being. Migration increased until 1920, when the New Zealand Government introduced restrictions under a “permit system”.

Later, in 1926, The White New Zealand League was formed as concern grew about the apparent threat that Chinese and Indian men appeared to present in terms of miscegenation and alien values and lifestyle. Discrimination against Indians took the form of being prevented from joining associations and accessing amenities such as barbers and movie theatres.

By 1945, families (mostly of shopkeepers and fruiterers) were getting established, and marriages of second-generation New Zealand Indians occurring. The profile of Indians changed after 1980, from the dominance of people born in or descended from Gujarat and Punjab. Indians began coming from Fiji, Africa, Malaysia, the Caribbean, North America, the United Kingdom and Western Europe.

Migrants are implicated in the ongoing colonial practices of the state and as Damien Riggs says the imposition of both colonisers and other migrants onto land traditionally owned by Maori maintains Maori disadvantage at the same time that economic, social and political advantage accrues to non-Maori.

But my friend Kumanan Rasanathan says that our accountabilities are different: “Some argue that we are on the Pakeha or coloniser side. Well I know I’m not Pakeha. I have a very specific knowledge of my own whakapapa, culture and ethnic identity and it’s not akeha. It also stretches the imagination to suggest we are part of the colonising culture, given that it’s not our cultural norms and institutions which dominate this country” (Rasanathan, 2005, p. 2).

Typically indigenous and migrant communities have been set up in opposition to one another as competitors for resources and recognition, which actually disguises the real issue which is monoculturalism, as Danny Butt suggests. My friend Donna Cormack adds that this construction of competing Others is a key technique in the (re)production of whiteness.

My conclusion is that until there is redress and justice for Maori as the indigenous people of New Zealand, there won’t be a place/space for me.

As Damien Riggs points out, the colonising intentions of Pakeha people continues as seen in the contemporary debates over Maori property rights of the foreshore and seabed which contradict the Treaty and highlight how Maori sovereignty remains denied or challenged by Pakeha.

My well being and belonging are tied up with that of Maori. Maori have paved the way for others to be here in Aotearoa/New Zealand, yet have a unique status that distinguishes them from migrant and settler groups. After all I can go to Goa to access my own culture but the only place for Maori is Aotearoa/New Zealand.

Increasingly, the longer I’ve lived in Aotearoa/New Zealand and spent time with Maori, the more I’ve begun to understand and value the basis of Maori relationships with the various other social groups living here as being underpinned by manaakitanga (hospitality), a concept that creates the possibility for creating a just society. Understanding and supporting Treaty of Waitangi claims for redress and Maori self-determination (tino rangatiratanga) allows for the possibility for the development of a social space that is better for all of us.