Helena Fietz
Assistant Professor Louisiana State University
- Baton Rouge LA
Dr. Fietz’s research examines how disability care practices intersect with public policy in Brazil and the US.
Biography
Areas of Expertise
Research Focus
Disability Care Practices & Social Inclusion
Dr. Fietz’s research focuses on disability, care practices, and family expectations in Brazil and the United States, probing how gender, race, class, and generation shape public policy and cultural representations of disability. She combines ethnographic fieldwork, critical disability studies, and policy analysis to expose health inequities and inform inclusive care and social-inclusion strategies.
Education
Universidade Federal do Rio Grande do Sul
Ph.D.
2020
Universidade Federal do Rio Grande do Sul
M.A.
2016
Pontifícia Universidade Católica do Rio Grande do Sul
LLB
2008
Articles
Waiting, Caring, and Disability: The Makings of Time for Mothers of Adults with Intellectual Disabilities
Cadernos Pagu2023
No Brasil, a centralidade do cuidado familiar faz com que a vida de mães de pessoas com deficiência seja marcada pela busca por serviços adequados para seus filhos. Com base em um trabalho de campo realizado junto a mães de adultos com deficiência intelectual da cidade de Porto Alegre, examinarei, a partir da trajetória de vida de uma de minhas interlocutoras, as dependências que se dão “ao longo do tempo” e suas transformações ao longo da vida. Com isso, busco compreender como o tempo do cuidado e o ‘tempo aleijado’ (Crip Time) atuam na conformação do cuidado familiar da pessoa com deficiência. Proponho, por fim, que o reconhecimento dessas temporalidades dissidentes é essencial para a valorização do trabalho do cuidado e da experiência da deficiência.
The Chronicity of Home-Making: Women Caregivers in Dis/Abling Spaces
Space and Culture2023
Care for disabled family members in Brazil has historically been concentrated in the home, but the Covid-19 pandemic has intensified domestic care labor by limiting infrastructures of care. Drawing on ethnographic fieldwork with women caring for disabled others at different stages of life in three regions of Brazil, we advance two interconnected concepts that emerged in our interlocutors’ narratives. We contend that the Covid-19 pandemic has engendered a chronification of home-making, which intensified a long-standing pattern of unequally gendered labor in maintaining arrangements of spaces, people, and things. In the context of the progressive loss of social safety nets and deepening social inequality, this chronicified process of home-making also gives rise to dis/abling care—care that simultaneously enables others and disables caregivers. Our work demonstrates how the pandemic is re-entrenching historical inequalities in Brazil and how disability is produced in pandemic times.
Negotiating Care: Living Arrangements and Adults with Cognitive Disabilities in South Brazil[1],[2]
Aequitas Revue de développement humain, changement social, handicap.2020
Assisted Living for adults with disabilities is a recent subject inboth Brazilian legislation and public debates. Although stillstigmatized by the idea that those who seek different livingarrangements for their children would be abandoning them, the concernwith both the autonomy of people with disabilities and the well-beingof the caregivers has prompted this theme to gain force in public andprivate spheres. Drawing from an ethnographic work with mothers ofadults with cognitive disabilitiesy from Porto Alegre, Brazil, whoconstituted a group to demand governmental action regarding assistedliving facilities, I propose a reflection on how such plea enables afurther discussion on the way disability and care are enacted. I arguethat by thinking of their trajectories through the care practices theyentail, one can track the moralities surrounding their experience ofmotherhood and how they are telling of the way disability is dealt within this specific time and place. Situating their claim within broaderdebates on institutionalization, I stress how their plea cannot beunderstood without a critical stand on ableism and the invisibility anddevaluation of care work.
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