Prof’s research on girls and women with disabilities in rural Vietnam challenges us to think about the journey to global inclusion in a contemporary context
By Nick Ward
Professor Xuan Thuy Nguyen of the Institute of Interdisciplinary Studies examines how girls and women with disabilities in the global South are overcoming societal barriers to claim their rights and build a more inclusive world.
Nguyen leads a Social Sciences and Humanities Research Council of Canada funded project titled Transforming Disability Knowledge, Research, and Activism (TDKRA) which aspires to bridge gaps in knowledge on girls with disabilities through the promotion of inclusive education and human rights.
Nguyen has been participating in this research and activism for nearly twenty years and she believes that legislators are finally beginning to deeply consider the concept of disability rights, development and inclusion on both local and global levels.
In her recent and acclaimed book, The Journey to Inclusion, Nguyen presents progressive, critical takes on what living with a disability means in a neo-liberal, neo-imperialist, and neo-colonial global context.
Nguyen took some time out of her busy schedule to discuss her fieldwork in Vietnam which documents the experience of girls and women living with disabilities.
How did you come to the transnational research on the experiences of disabled girls and women?
My interest in social justice research came from my experience as an inclusive education teacher and educational administrator in Vietnam. I graduated from a teacher education program from Hue University in the late 1990s and began my volunteer work with disabled boys and girls in a provincial Association of the Blind in the Thua Thien Hue province, who currently partners with me in the Transforming Disability Knowledge, Research, and Activism (TDKRA) project. The experience of working with disabled students has taught me how to recognize the various institutional barriers which they faced, including access to education.
Growing up in Vietnam after the Imperialist War was a unique historical condition. It made me aware of the politics of disability within a post-conflict context, and yet, we did not think about disability as a socio-political issue in Vietnam. With approximately three million people who became impaired after the Vietnam War, disability has been always embodied within the cultural politic of my country. And yet, in Vietnam and around the world, disabled people have always been treated as an object of charity rather than social actors or activists for social change.
How does the study of disability differ around the world?
I travelled to Canada as a graduate student in the early 2000s. It was then and there when I began to study disability studies in some of my coursework, but much of what I learned has been disconnected with my experience growing up in a post-conflict context, where disabled people have been seen as victims of the war or a symbol of God's punishment.
We also did not talk about the ways in which disabled women and girls experienced their lives in non-Western contexts.
My engagement with colleagues in disability studies across professional communities in the global North made me realize that there has been uneasy engagement with disability in other parts of the world. The absence of disability and disability studies in the South from spaces such as academic conferences are just an example of this epistemic exclusion. Neo-colonialism is reproduced through the production of Eurocentric disability studies, where disabled people in the South are usually known to the West through numbers or statistics which focus primarily on their health condition, poverty, and impairments; through representations of their victimhood as illustrated in human and disability rights monitoring reports.
It is assumed that knowledge from the South can be read, interpreted, and theorized from the perspective of scholars in the global North. Here is what I have called, following post-colonial scholar Raewyn Connell, the domination of Northern theory in disability studies. For example, studies that address “disability in the global South” or ‘disability in the majority world” are usually conducted by prominent disability scholars from the global North, and yet, rich and complex experiences of disabled people in the global South are usually ignored or erased.
How do you confront these issues?
We must interrogate this reality by asking hard questions. Hard questions such as: how can we decolonize this structure of power which has excluded, erased, or marginalized the experiences of disabled people from other parts of the world? Also, we must ask how we can reclaim such inclusive spaces for knowledge production and how can critical disability studies be more reflexive about knowledge which privileges particular ways of knowing from the Global North?
From there, we should explore what alternative possibilities can exist to foster more inclusive and transformative knowledge that tackles systemic forms of oppression in colonial and postcolonial contexts and which approaches, theories, and methodologies can we use to engage them.
Could you explain how your research became focused on girls and women?
Women and girls with disabilities became the key participants in my research due to their absence from research across social sciences and humanities.
They faced systemic barriers to inclusion due to discrimination against their disability, gender, ethnicity, and nationality.
However, the lack of attention to their intersectional barriers have reinforced their invisibility and exclusion. Current transnational efforts to mobilize their rights through the rights-based discourse, including through the United Nations Convention on the Rights of Persons with Disabilities, have continued to reinforce the representations of disabled women and girls as victims. They do not recognize the complexity of inclusion and exclusion that disabled women and girls have faced in the global South due to war, conflict, and colonial and imperialist violence.
So, how can we create spaces of disabled women and girls to envision inclusion from their own perspectives? How can we build connections among disabled women and girls who share some similar and yet distinctive experiences with inclusion and exclusion? My research, along with some others, is an effort to counter the dominant narratives which have silenced them.
As a person with a chronic illness who has experienced mental health challenges, and whose family members have experienced various disabilities, I see my relationships with disability as constantly shifting and changing, depending on my spaces and times, the institutional conditions and communities in which I live.
What specific work will be undertaken through the TDKRA project?
TDKRA has emerged as a step towards what I call “unsettling” the boundaries between research versus activism to build a more transformative approach to inclusion and social justice in the global South. This project aims to tackle the boundaries between research and activism in Vietnam. Our main objective is to engage girls and women with disabilities in three disadvantaged communities in knowledge production as a form of activism for their inclusion.
We build on the shared values of access, inclusion, and relationships between researchers and activists across the global North and South to reframe our politics of engagement with Southern partners.
Thus, engaging with local partners such as Disabled People’s Organizations (DPOs) in Vietnam is a way of “unsettling” — meaning tackling the unequal power relationships between researchers in the North and activists in the South. In Vietnam and countries in the global South, DPOs have emerged as a network of local and municipal organizations of people with disabilities with specific mandates for disability rights, inclusion, and equality.However, most DPOs are under-resourced and are subject to institutional policing by the government. Thus, we engage with DPOs as a way to build their leadership while mobilizing their strengths in connecting the project with their local communities.
To date, women and girls with disabilities and their DPOs have mobilized this network translocally, and in some cases, transnationally. However, there is significant institutional policing over activist work in Vietnam.
This project — an effort to transform the boundary between research and activism — is not an exception. While the DPOs who have partnered with us have gained some recognition for their leadership and grassroots movements, they are still subject to institutional surveillance, and this is a very difficult issue to deal with.
Our hope is that by building on their local knowledge and capacities, we will continue to strengthen this work by fostering their leadership and creating knowledge mobilization spaces with their communities. We also hope that this partnership would open a space for women and girls with disabilities across the global North and South to share their experiences and in so doing begin to collectively challenge the institutional conditions which have oppressed or marginalized them.
What will be your methodology for this interdisciplinary research?
The term “interdisciplinary research” has been widely used in recent decades, and yet it is not clearly defined. From my perspective, interdisciplinary research is a new type of inquiry that challenges us to redefine the nature of our disciplines.
To conduct an interdisciplinary study with women and girls with disabilities, I asked: What does it mean to engage women and girls with disabilities in the global South? How can their inclusion and exclusion be examined from different disciplinary perspectives? What approaches, theories, and methods can be useful for engaging their ‘voices’ through the use of multiple forms of representation? These questions are not bounded by any disciplines; rather, they are central to our critical research across disability studies, women’s and gender studies, and girlhood/childhood studies. Thus, TDKRA has strived for a more inclusive approach to research production that is interdisciplinary, participatory, activist-oriented, and decolonial. Our ultimate question is: How can we decolonize the ways research is historically exclusive of disabled women and girls?
To develop the TDKRA project, I engaged with team members across disciplines such as critical disability studies, human rights, inclusive education, girlhood studies, women’s and gender studies, and political science. We use participatory visual methodologies such as cellphilm (taking short videos on smartphones), participatory film-making, photovoice, drawing, along with interviews and focus groups as multiple spaces and methods.
These methods can provide multiple platforms for participatory engagement by shifting power from the researchers to the researched individuals. While it is not always easy for our team members to negotiate our power relations, given the new and challenging working conditions under which my team members have engaged, we have created different structures so that each team member can build on their own expertise and provide support for one another. This includes listening to the advice and recommendations from my academics and partners in Vietnam to ensure that our project can meet their priorities.
How important are your various partnerships for the TDKRA project?
We are aware that the partners may have very different agendas from us and sometimes it is difficult to reconcile them; but we share our interest in mobilizing inclusion by engaging disabled girls and women in sharing their experiences. True collaboration requires us to deconstruct our privileges and work together towards a common goal.
How did you come to research the communities in Hanoi, Thua Thien Hue, and Can Tho?
As the project leader, I had consulted each of the three communities prior to the development of the project to understand their interest in joining.
I also invited my DPOs partners to be involved in the decision-making process, such as where they would like the project to be implemented and why. For example, after having consulted the Blind Association at the provincial level, I was referred to the district level where the project is executed. As you know, in collaborative and community-engaged research, we must learn how local politics work in order to establish a more effective network and meaningful collaboration.
At the same time, we must build on our project’s objectives in engaging with very disadvantaged communities. Thus, we decided to select A Luoi (Thua Thien Hue Province), a mountainous area in central Vietnam with the majority of ethnic minorities heavily affected by Agent Orange during the Vietnam war, to have a better understanding of the lived experiences of participants impacted by the Agent Orange within a post-colonial context.
Furthermore, with an aim to strengthen DPOs leaderships in the context of the global South, we selected Bac Tu Liem (Hanoi City) and Ninh Kieu district (Can Tho City) — these local communities have had a relatively strong disability activist network with the disabled women and girls and have partnered with me in the MRGD project. This allowed us to sustain our network and trustful relationships while expanding on the role of DPOs in community engagement.
Could you speak to the ethical implications of documenting the experiences of disabled girls and women in these disadvantaged communities?
Although participants have shared with us important stories and we have used different methods for triangulating their data, I think that we cannot fully recover or reconstruct the truth of these stories. Stories are representations of participants’ memories and experiences.
While we are committed to listening to their powerful experiences, we do not seek to verify the truth of such stories, but rather, see those stories as socially constituted by the participants’ multiple social positions. Our focus was instead on the use of participatory methods to empower participants to shape their stories through their individual and collective memories, and sometimes, through their imagination of what their lives would look like, demonstrated through their drawings. How these stories are constituted as ways of building their collective voices and identities has mattered to us more than the truth of such stories.
Secondly, the use of participatory visual methods such as drawing, photovoice, and cellphilming (smartphone videography), allowed me to document their experiences from both the process and product of the visual, as well as what participants talked about their products (or the lack thereof). For example, in one cellphilm produced by a group of girls in A Luoi, we saw an ethnic minority girl being treated as a server to her presumably non-disabled friends. She was asked to serve a drink and clean the cup. Her friend, acted as able-bodied and class privileged individual, was shown to be pointing her finger at the young girl, illustrating the ways in which various forms of bullying have played out in their everyday life.
We then invited the girls to convey the film’s message in the group discussion and public sharing. The data was triangulated with their visual discussions and their own interviews, as well as other instances where participants shared in other focus groups. We also used data from their interviews to create composite stories using digital tools to bring these stories back to the participants.
Did you notice themes in these stories?
We have learned from multiple stories, some are painful, emotional, some are incomplete, omitted, and sometimes, we just got mere silence. Thus, I am not sure I can capture one single way of understanding disability, but rather, acknowledge the diversity of disability discourses in different communities in the global South.
One of the major findings from this project is that many girls and women expressed their “self-confidence.” This term may not be significant for those of us in the academy, but for disadvantaged girls and women in very disadvantaged communities in the South, this is a radical shift from the ways they internalized ableism. This means self-empowerment and self-transformation. The participants talk about networking as one way for sharing their stories and becoming involved in social activism. This is important to us as we begin to see signs of social change by the transformative potentials.
What do we need to unlearn about the colonial concept of disability?
I am not sure if I can unpack this truth without talking long into the night, but let me try to put it this way — let us start unpacking the concept of disability by asking: who produces knowledge about disability?
Interestingly, data about disability in the global South have been historically produced by the global North. For instance, the World Report on Disability by the World Health Organization and the World Bank has been one of the most prominent reports produced by knowledge-based institutions in the global North. It produced statistics on disability using a bio-psycho-social approach believed to be useful for disability measurement. Moreover, as I have argued elsewhere, this discursive practice has constituted disability through the institutional desire to govern, control, and erase disability in a modern context. It is governmentality in itself.
As we are progressing towards the second decade of the twenty-first century, we — international development communities — may appear to be more inclusive of disability. Policy frameworks such as the United Convention on the Rights of Persons with Disabilities and the Sustainable Development Goals may be indicative of a process of making disability more visible in the global march towards development. Clearly, we must acknowledge the remarkable efforts and struggles of the disability rights movements in the global North in mobilizing this rights-based agenda transnationally.
At the same time, this new policy regime has also created new spaces and opportunities for academic institutions, the United Nations agencies, NGOs and DPOs in the global South to participate in re-shaping this new regime of truth through the knowledge practices. More capable disabled people can now be included into the nation-state’s territorial space, and yet, the majority of our participants have struggled to survive and to secure their livelihoods and job opportunities within their various “spaces of exception,” to borrow from Professor Sherene Razack’s term. This regime of knowledge is historically constituted, and it has political implications for understanding disability in the global South.
In Vietnam, for instance, disability was constituted in the context of imperialism when the French colonizers sought to exercise their mission civilisatrice (a colonial mission to ‘civilize’) in Indochina in the nineteenth century. The use of colonial practices, including medicalization and infantilization of Indigenous bodies, including disabled boys and girls, constituted so-called abnormal or diseased bodies that needed to be cured to become normalized, and thus, civilized.
Colonial governance constructed disabled childhoods through a gendered, racialized, and sexualized hierarchy, which essentialized their difference. The colonized subjects were sexualized, and yet, they were infantilized as children and deemed essential for justifying the colonial power in civilizing Indigenous peoples through its Enlightenment ideologies.
Disability is discursively constituted within the colonial desire governing the disabled, racialized, and sexualized bodies in the global South. It is also materially produced through colonial violence the biopolitics of impairment in the global South. The work of Nirmala Erevelles, Jasbir Puar, Eunjung Kim, Helen Meekosha, Shaun Grech, and Karen Soldatic are useful for politics of theorizing disability as a consequence of colonial and imperialist violence.
So, we must begin by listening to the stories from local contexts?
Right. It is a process of unlearning — meaning we must challenge the Eurocentric/Western-centric assumptions on what disability is, and instead, rethink the historical conditions where disability experiences are constituted and re-constituted in transnational and translocal social conditions. It is a politics of disruption which challenges us to think about research as a process of reclaiming subjugated knowledges, including knowledges that are usually silenced. To think about disability as a space for transformation, I think, is to make visible the colonial and neo-colonial practices which constituted the biopolitics of disability and debilitation, to use Puar’s term, in countries in the global North and in Indigenous communities in the global North. This requires us to rethink where and how disability is read, by whom, from where, and towards what ends, as some epistemological challenges to the dominance of Northern disability theories. This is what TDKRA has sought to create.
As activist-oriented scholars, I believe, we must embark on more challenging politics of disability and activism in a transnational context. It requires us to rethink, revisit, and renew our politics of theorizing disability in the academy. We need to build on the voices of those who are affected by colonial and imperialist practices and avoid alienating or excluding our partners and participants outside of the Western contexts by assuming that there is one ‘right’ way of doing disability studies.
In what ways do disability and gender intersect? What about disability and age?
I have been working on the politics of inclusion over the last ten years. Each of the projects I have been involved is a little step towards my “Journey to Inclusion” — a journey that has been unfinished for those of us who engage in this kind of work. It is a hard journey, not only because I have become more invested in what I value intellectually and emotionally, but also because it has always required me to reflect on what we do and be critical of what we see as truth and inclusive. Politics of inclusion, as I call it, is a process of identifying forms of exclusion that have been structured by colonialism, imperialism, neo-liberalism and other forms of oppression which prevent marginalized groups from meaningful engagement.
Intersectionality is important for framing the politics of inclusion because it helps to tease out axes of social inequality based on the individual’s experiences with disability, class, race, gender, sexuality, ethnicity, and nationality. This framework is useful for me to understand the ways in which disabled girls and women have positioned themselves within multiple axes of advantages and disadvantages. For example, some girls with intellectual disabilities in my project are more disadvantaged than other girls because they are seen as having cognitive problems with their brains, and thus perceived as abnormal.
Positioned at the crossroads of class, gender, and disability, their experiences reflect multiple dimensions of oppressions. By contrast, the girls and women in A Luoi have experienced explicit forms of institutional racism due to their ethnicities, and this seems to be more poignant for some disabled girls and women than others in this community. Interestingly, while we had not expected ageism to be a factor that constitutes disability discrimination among our participants, we found that older women with disabilities seem to have experienced more oppression since they are seen as incapable of leading a productive and successful life, which is essential for their families and communities.
Younger girls with physical disabilities felt more included, perhaps because of their class privileges and because physical disabilities have become more visible in their communities and schools nowadays. So, while we cannot generalize their experiences, we must recognize multiple forms of exclusion which constitute their marginalization.
Anything that I missed that you’d like to cover?
TDKRA has set out to be a different form of research which challenges privileged forms of knowledge production in the academy. One of such praxis has been our project’s effort to define who is entitled to publish, as well as how our partners in the global South can claim their authorship through publications. We recognized and acknowledged the ways in which publishing is a disabling process that privileges academic knowledge primarily in the global North.
As such, our new publication, Unsettling research versus activism: how might critical disability studies disrupt traditional research boundaries, is an outcome of our collective effort to engage in a collaborative writing process as a discursive practice which disrupts how knowledge has been historically produced in the global North. While this is a discursive practice which we have initiated in this project, we need to reflexively think about decolonizing the ableist practices in the academy itself. Western academic institutions have been exclusive of women, transgendered people, people of colour, disabled people, and those from the global South.
We need to rethink how we have been privileged by being positioned in the global North academic institutions; how this privilege can be deconstructed to actually learn from and engage with forms of knowledge produced with and by women and girls with disabilities in the global South, as an alternative approach to knowledge production. I believe that TDKRA is a beginning, rather than the end, of this transformative process.