Resources search

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

Expand view

Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Who is being left behind in sub-Saharan Africa, Asia and Latin America? 3 reports from ODI

LYNCH, Alainna
BERLINER, Tom
MAROTTI, Chiara
BHAKTAL Tanvi
RODRIGUEZ TAKEUCHI Laura
et al
February 2016

Expand view

The commitment to ‘leave no one behind’ has been a key feature of all the discussions on the Sustainable Development Goals (SDGs). Here are three papers setting out the first step to implementing this agenda - the step of identifying marginalised communities. The focus is on two case study countries for each of the three regions, sub-Saharan Africa, Asia, and Latin America and the papers identify gaps in achieving a number of outcomes relating to key SDGs targets for marginalised groups. The paper on Asia highlights people with disabilities in Bangladesh.

Leave no one behind : the real bottom billion

BHATKAL, Tanvi
SAMMAN, Emma
STUART, Elizabeth
September 2015

Expand view

"This paper sets out why the ‘leave no one behind’ agenda should be a key priority (i) in implementing the SDGs in all countries and (ii) in assessing whether or not governments have met them. It underlines how deeply entrenched marginalisation is, how vulnerabilities often overlap to amplify multiple disadvantages, and just how little we know about some groups that are likely to be deprived"

For Michael Charlie: Including girls and boys with disabilities in the global South/North

STIENSTRA, Deborah
2015

Expand view

Recognizing that there are pockets of the global South in the global North, I illustrate in this paper how Indigenous and northern children with disabilities and their relationships with their care providers have been rendered invisible and excluded by jurisdictional disputes between levels of government, an ongoing drive to institutionalize children with disabilities and longstanding colonial and capitalist values and systems. The paper highlights how Jordan’s Principle, an Indigenous childfirst response offers a small first step in ensuring children with disabilities in Indigenous and northern communities in Canada, access to necessary services in their communities.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 2

Development process in Africa: Poverty, politics and indigenous knowledge

EIDE, Arne H
KHUPE, Watson
MANNAN, Hasheem
2014

Expand view

Background: Persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. Still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised.

 

Objectives: The main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination.

 

Method: This article aimed at integrating three papers on the above topics presented at the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) Symposium. The researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice.

 

Results: The article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. Secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. Thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture.

 

Conclusion: A critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. Not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level.

Disability, poverty and education: perceived barriers and (dis)connections in rural Guatemala

GRECH, Shaun
2014

Expand view

This paper engages with the impacts of disability on the formal education of disabled people in poor rural areas. Reporting on qualitative ethnographic work in Guatemala, adults with a physical impairment provided retrospective accounts of their educational trajectories. Findings highlight multidimensional and dynamic barriers to education confronted by all poor people, but which often intensified for disabled people. These met a host of disability-specific barriers cutting across social, physical, economic, political and personal spheres. Findings report how in the face of more persistent basic needs and costs, education had a high opportunity cost, and often could not be sustained. Disabled parents also came to prioritise the education of their children translating into limited or no school re-entry for these parents. The paper concludes that engagement with temporal and context specific (but fluid) spaces of poverty is necessary, because it is within these spaces that disability and education are constructed and lived, and within and through which barriers emerge. Cross-sectoral efforts are needed, addressing educational barriers for all poor people indiscriminately, while targeting families to remove obstacles to other basic needs competing with education. Critically, efforts are needed to ensure that educational outcomes are linked to immediate contributions to the family economy and welfare through work.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

Globalizing psychiatry and the case of ‘vanishing’ alternatives in a neo- colonial state

DAVAR, Bhargavi
2014

Expand view

Analysing ‘modernity’ in India is a complex exercise, as the movement of the ‘modern’ is locally determined and may be non-linear at different sites and contexts. General medicine and psychiatry are illustrative of the difference in how ‘patienthood’ has been historically constructed, with each wave of ‘modernisation’ changing the subjecthood of the ‘mentally ill’. Unlike the public health sector in India, the mental health sector is driven by the ‘mental asylum’ archetype, continuing through late colonial times into contemporary science in refurbished designs. A related set of changes also concomitantly happened in the domain of indigenous healing, with each epistemic shift pushing this domain to the margins of knowledge and healing practice. The paper is set against the time period covering 1850s until recently (2014).

 

Disability and the Global South, 2014, Vol. 1 No. 2

Passive-Aggressive: Māori Resistance and the Continuance of Colonial Psychiatry in Aotearoa New Zealand

COHENA, Bruce M Z
2014

Expand view

This article offers a comparative discussion on the encroachment of psychiatric imperialism in the Global South through considering the continuance of western psychiatry in a colonized part of the Global North. Whereas the Indigenous population of Aotearoa New Zealand were considered mentally healthier prior to the 1950s, current statistics show that Māori are much more likely to experience a ‘mental illness’ and be admitted to psychiatric hospital compared to settler groups. A review of the literature highlights socio-economic variables and ‘acculturation’ issues as key to understanding the difference in prevalence rates. However, utilizing a ‘critical model’, influenced by writings on colonial psychiatry and race, it is demonstrated in this discussion that a crisis in colonial hegemony between the 1960s and 1980s led to an increased need for colonial psychiatry to pathologize a politically conscious Māori population. As the first academic article to attempt such a critical de-construction of psychiatric practice in Aotearoa New Zealand, it is recommended that future research is re-orientated towards a focus on the psychiatric institution, and the institution of psychiatry, as a site of colonial power and social control.

 

Disability and the Global South, 2014, Vol. 1 No. 2

Study on the situation of indigenous persons with disabilities, with a particular focus on challenges faced with regard to the full enjoyment of human rights and inclusion in development

UNITED NATIONS
February 2013

Expand view

"The study reviews the situation of indigenous persons with disabilities in the enjoyment of their human rights. It looks at the main relevant legal standards - the Convention on the Rights of Persons with Disabilities and the United Nations Declaration on the Rights of Indigenous Peoples - and how those standards interact to protect relevant rights. The study examines some areas in which, according to indigenous persons with disabilities, there is discrimination in the enjoyment of rights, such as political participation, access to justice, education, language and culture, and issues specific to indigenous women and children with disabilities. It is concluded that more attention should be paid to the rights of indigenous persons with disabilities"
E/C.19/2013/6

African indigenous knowledge and research

OWUSU-ANSAH, Frances E
MJI, Gubela
2013

Expand view

This paper seeks to heighten awareness about the need to include indigenous knowledge in the design and implementation of research, particularly disability research, in Africa. It affirms the suitability of the Afrocentric paradigm in African research and argues the necessity for an emancipatory and participatory type of research which values and includes indigenous knowledge and peoples. In the predominantly Western-oriented academic circles and investigations, the African voice is either sidelined or suppressed because indigenous knowledge and methods are often ignored or not taken seriously. This paper posits that to be meaningful and empowering, African-based research must, of necessity, include African thought and ideas from inception through completion to the implementation of policies arising from the research. In this way the work is both empowering and meaningful for context-specific lasting impact.

International expert group meeting on combating violence against indigenous women and girls : article 22 of the United Nations declaration on the rights of indigenous peoples

UNITED NATIONS NON-GOVERNMENTAL LIAISON SERVICE (UN-NGLS)
March 2012

Expand view

This newsletter presents the main themes and issues that were presented at the United Nations Permanent Forum on Indigenous Issues conference. The conference applied a human rights framework to the issue of gender-based violence faced by indigenous women, while contextualizing its global manifestations in the context of States’ responsibilities under international human rights law, as articulated in Article 22.2 of the UN Declaration on the Rights of Indigenous Peoples (UNDRIP)
NGLS e-Roundup
International Expert Group Meeting "Combating violence against indigenous women and girls: Article 22 of the United Nations Declaration on the Rights of Indigenous Peoples"
Geneva, Switzerland
18-20 January 2012

Sexual-health communication across and within cultures : the clown project, Guatemala

SAVDIE, Anthony
CHETLEY, Andrew
June 2009

Expand view

This paper puts forward an argument in favour of careful and critical analysis of culture in formulating communication strategies with and for specific groups, based on experience drawn from the Clown Project in Guatemala and other countries in Central America. The Clown Project uses labour-intensive face-to-face street theatre and dialogue, participatory workshops, and symbolic communication such as print-based material to reach those most vulnerable to the spread and impact of HIV and AIDS . The analysis takes into account relations of power within and between vulnerable groups, examining the centre-periphery dynamic between classes, genders, ethnicities, age groups, and other social identities. Both appropriately supported insider perspectives and appropriately processed outsider knowledge are recommended, along with ways of bridging science and the field, theory and practice

Learning leadership development from African cultures : a personal perspective

MALUNGA, Chiku
September 2006

Expand view

This PraxisNote supports the notion that effective leadership development strategies in Africa should be rooted in the rich cultural heritage and indigenous social practices. Crucially, the paper adopts an 'ubuntu' perspective, a world-view built around five interrelated principles: sharing and collective ownership of opportunities, responsibilities and challenges; the importance of people and relationships over things; participatory decision making and leadership; patriotism; and reconciliation as a goal of conflict management. The Note looks in some detail at the implications for leadership development of these principles and briefly discusses lessons learned

Indigenous women working towards improved maternal health : Ratanakiri Province, Cambodia

HEALTH UNLIMITED
May 2006

Expand view

This publication, part of the Action Research to Advocacy Initiative (ARAI) project, contains a summary of the research report 'Crossing the river and getting to the other side' (phase 1of the project) and a review of a series of a advocacy workshops for stakeholders (phase 2). The research assessed the maternal health situation in Ratanakiri, considering the policy environment and indigenous perspectives on maternal health priorities. The study found that access to health services is hampered by lack of money, absence of affordable transport, lack of care services, discrimination, lack of social support, traditional beliefs and inability to speak the official language. These findings were shared with stakeholders through a series of workshops design to develop advocacy capacity and skills. Stakeholders identified priority issues and developed an advocacy action plan. These meetings are described in some detail and insightful lessons learned are presented

Global health watch 2005-2006 : an alternative world health report

LEMA, Claudia
et al
2005

Expand view

This report is the result of a collaboration of leading popular movements, NGOs, activists, academics and health workers. It provides an evidence-based analysis of the political economy of health and health care and challenges policies and initiatives of global organisations including the World Bank, the World Health Organization and UNICEF. Many key issues relevant to health are covered, including health care services and systems, health of vulnerable groups, climate change, food and water, education, armed conflicts. Part E also provides and assessment of the impact global institutions, transnational corporations and rich countries. This report is a call for action, directed to health workers and activists and national and international policy-makers

Ensuring the rights of indigenous children

MILLER, Michael
February 2004

Expand view

This Digest details how the rights of indigenous children in both rural and urban areas are often compromised or denied. Specific areas of concern include the rights of indigenous children to survival and development, to good health, to education that respects their cultural identity, to protection from abuse, violence and exploitation, and participation in decision-making processes relevant to their lives. At the same time, however, indigenous children possess special resources as custodians of a multitude of cultures, languages, beliefs and knowledge systems. As this Digest discusses, the most effective initiatives to promote the rights of indigenous children build upon these very elements. Such initiatives recognize the inherent strength of indigenous communities, families and children, respect their dignity and give them full voice in all matters that affect them. The child age group in this report is from 0 - 18, with some areas that focus on early childhood development. For example, the right to birth registration, a name and nationality (p 9), or intercultural initiatives for safe childbirth in Peru (p 15)

The role of registers and databases in the protection of traditional knowledge : a comparative analysis

ALEXANDER, Merle
et al
January 2004

Expand view

This report seeks to help inform the debate regarding the potential and limitations of databases and registers for the protection traditional knowledge through the analysis of a number of case studies of existing registers established by indigenous peoples, states, non-governmental organisations and research institutes. Part I of the report discusses a number of underlying concepts regarding the nature of traditional knowledge; Part II presents case studies from Canada, India, Panama, Peru and Venezuela; Part III provides a comparative analysis of the case studies focusing on objectives, scope, procedures and benefits; Part IV considers the role of databases and registers in defensive and positive protection of traditional knowledge and their relationship to sui generis legal regimes, and the possibilities for interim protection of traditional knowledge through use of sui generis database laws and database trusts; and Part V sets down a number of conclusions and recommendations for further study

Utz´ Wach´il : health and well being among indigenous peoples

BRISTOW, Fiona
Ed
2003

Expand view

In this document indigenous people from different parts of the world describe their beliefs and attitudes to health and well being and what they do when they have problems with their health. It aims to provide further evidence of the health challenges facing indigenous peoples so that policy makers and service providers can work more effectively with them to improve their health and well being

Understanding the indigenous knowledge and information systems of pastoralists in Eritrea

DINUCCI, Alessandro
FRE, Zeremariam
2003

Expand view

This case study explores pastoralists' traditional natural resources mangement practices and their sources and channels of information. It aims to contribute to the development of demand-led extension and advisory services for nomadic herders in Eritrea, on the premise that sustainable development programming builds on indigenous systems of communication and information diffusion

Pages

E-bulletin