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Our article delves into reflections from researchers working in the field of feminist disability studies, with a focus on proposing care as an ethic aimed at reshaping relationships in academic studies. It began with the problem of "speaking for others" and the proposal of "speaking with" to enable the production of counter-narratives by historically silenced people.
Care as an ethic for research is thus
related to the methods used to produce embodied knowledge; interdisciplinary
and transdisciplinary tools to facilitate the relationship between academia,
activism, and communities; pending challenges regarding critical accessibility,
especially in cases of intellectual and mental disabilities; tensions
concerning the hierarchy of expert and experiential knowledge; and resistance
through slow research to the mandates of academic productivity, associated with
androcentric, neoliberal, and ableist logics.
In this context, thinking of care as an
ethical foundation in the process of academic knowledge production implies
addressing its paradoxical etymological roots in the Latin cura, which
denote two conflicting meanings. As we further explain in the article, one
meaning refers to worries, troubles or anxieties emerging, in this case, from
the relationship with marginalised participants and communities. The other
meaning refers to providing for their welfare, with a positive connotation
related to attentive conscientiousness to the fulfilment of their rights. We
think these paradoxical roots account for the dual feminist identity that
involves blurred and complex boundaries for those who navigate academia and
activism and are committed to questioning their own well-established ableist
epistemic legitimacy.
A feminist stance aims therefore to make
room for scholar activism, while also highlighting the remaining challenges for
creating greater dialogue, exchange and experimentation with new methods and
techniques to research with disabled women and gender non-conforming
people.
Concrete practices of disclosure,
listening, writing with and reflexivity shed light on how to implement
procedures from a feminist perspective that are conscious and engage with the
places of enunciation of the actors involved in processes of social knowledge
production in the disability field. Through these practices, the problem of
“speaking for others” may be addressed, for example, offering participants the
option to use their real names in all publications. Additionally, research
participants may be invited to coauthor training collaborative guides and
materials (such as this
one on tools for developing feminist disability teaching and research or these videos on civic
education for people with intellectual disabilities)
Finally, reflexivity on the problem of
“speaking with” leads all authors of
this paper to acknowledge the hybrid location from which we write as Latin
American. We have the privilege of access to the English language and to
networks that allow us to publish in highly indexed journals. We also have
professional trajectories and personal histories that include migration, as
well as mental health and disabling conditions that connect us with our
research field. The experiences of disabling conditions and of close affective
relationships with people who face the daily social disadvantages of disability
have allowed us throughout our different academic trajectories to exercise an
embodied reflexivity. This acknowledgment of personal experiences with
disability, not only as a biographical event but as a position within a power
field where multiple agents operate interdependently, helped build networks
aimed at challenging ableism present not only in academia but also among
professionals, families and even activists. In that context we have encouraged
participation and achieved producing knowledge with the people we have worked
with. This has not always been an easy task, since it implies the junction of
not only methodological decisions and common interests, but also fostering
lasting relationships based upon common moral principles and values about what
disability as a plural and heterogeneous field should look like.
As we state in the article, we want to
highlight the theoretical production made by Latin American researchers, rooted
in a region characterised by higher education and research institutions with
small budgets, but where feminisms have had a powerful development, especially
in recent times, influencing theoretical and political work around topics such
as "care". This, in turn, connects us with the marginality of the
broader academic community. In the case of disability researchers from Europe,
for example, while their labour conditions and positions within the global
knowledge production market may differ, they also situate themselves at the
margins of their own disciplines.
Therefore, we think a caring approach to
disability must involve an orientation toward shared knowledge production that,
beyond raising questions about the communities in which it circulates in and
the kinds of relationships that validate it, must maintain and improve
emotional, physical and material wellbeing for all participants. By reframing
the challenge of including people with disabilities in research, care as an
ethic for academic knowledge production might enable necessary shifts in
thinking about these processes from a shared experience between nondisabled and
disabled persons, contributing to the modification of current academic and
scientific validity criteria and research methods within both fields and beyond.
Author bios:
Constanza López Radrigán earned a
bachelor’s degree in social communication and a professional diploma in
Journalism from the Pontificia Universidad Católica de Valparaíso. She has a
PhD in Interdisciplinary Studies on Thought, Culture and Society (Universidad
de Valparaíso). She is currently a postdoctoral researcher at the Millennium
Institute for Care Research (MICARE) and she is a Young Researcher at the
Millennium Nucleus on Disability and Citizenship (DISCA). Her current research
project is focused on exploring caring practices to promote sexual and
reproductive autonomy of women with intellectual and developmental disabilities
in Chile.
Andrés Aparicio is a Systems Engineer from
Pontificia Universidad Javeriana (Colombia) and a Doctor in Arts with an
emphasis on Theatrical Studies and Practices from the Pontificia Universidad
Católica de Chile. He is Associate Researcher of the Millennium Institute for
Care Research (MICARE) and Adjunct Researcher of the Millennium Nucleus on
Disability and Citizenship (DISCA). His research is focused on body diversity
and epistemology of practice, their relationship to technology both as process
and artifact, and their application to care, understood broadly.
Marcela Tenorio D. is a full-time Professor
at the Psychology School of the Universidad de los Andes (Chile). She is also
an Alternate Director of the Millennium Institute for Care Research (MICARE).
She earned a professional diploma in Psychology from the Universidad de los
Andes (Colombia) and a doctoral degree in Psychology from the Pontificia
Universidad Católica de Chile. She was a postdoctoral fellow at Birkbeck
College at the University of London, sponsored by Professor Annette
Karmiloff-Smith. Her research focuses on understanding the variables that
promote human rights, social and community inclusion of people with
disabilities.
See the F&P article this blog is based upon at: https://journals.sagepub.com/doi/10.1177/09593535241306536
