Motherhood, disability, and rurality: descolonising practices and knowledge via the Las Quiscas case in Chile

ABSTRACT

Women with disabilities face a series of obstacles while exercising their motherhood. Despite the inter-disciplinary studies which have been undertaken on this topic, the ‘modern/colonial/Western/urban’ comprehension of these studies is incomplete and often lacks contextuality. The aim of this study is thus to investigate the life trajectory of a woman with a visual disability, regarding her motherhood process in a rural area of south-central Chile. We used in-depth interviews and photographic records, together with epistemic support from Disability studies, Motherhood studies, Rurality studies, and Descolonial studies. The results provided three categories of analysis: impeding access to dignified motherhood; legal incapacitation: stripping motherhood due to disability; and dehumanisation and loneliness: waiting as a resistance strategy for a conscious motherhood. The conclusions show that exercising motherhood for a woman with disability living in rurality is a trench where the boldest have subverted the precariousness of life. Furthermore, descolonising strategies translate into waiting and passivity as practices which question the colonial comprehension of time.

Il existe un certain nombre d’obstacles auxquels les femmes handicapées sont confrontées dans leur exercice de la maternité. Malgré les investigations interdisciplinaires, la compréhension moderne/coloniale/occidentale/urbaine des études est incomplète et peu contextualisée. Par conséquent, l’objectif de cette étude était d’enquêter sur la trajectoire de vie d’une femme avec une déficient visuel concernant sa maternité dans un secteur rural de la zone centre-sud du Chili. À travers d’une étude de cas, l’entretien approfondi et les enregistrements photographiques ont été utilisés. Ainsi les contributions épistémiques des études sur le handicap, les études sur la maternité, les études sur la ruralité et les études déscoloniales ont été considérés. Les résultats ont donné lieu à trois catégories d’analyse: difficulté à l’accès à une maternité décente; Incapacité légale: suppression de la maternité pour cause d’invalidité; déshumanisation et solitude: l’attente comme stratégie de résistance à la maternité consciente. Les conclusions montrent que l’exercice de la maternité par une femme handicapée qui vit en milieu rural au Chile est une tranchée où les plus audacieux ont bouleversé la précarité de la vie. Les stratégies de déscolonisation se traduisent par l’attente et la passivité en tant que pratiques qui remettent en question la compréhension coloniale du temps.

Existe una serie de obstáculos a los cuales se ven enfrentadas las mujeres con discapacidad en el ejercicio de su maternidad. A pesar de las investigaciones interdisciplinarias que se han abierto en la materia, la comprensión moderno/colonial/occidental/urbana de los estudios es incompleta y carece en ocasiones de contextualidad. Por ello, el objetivo de este estudio fue indagar en la trayectoria de vida de una mujer con discapacidad visual respecto a su proceso de maternidad en un sector rural de la zona centro sur de Chile. A través de un estudio de caso, se utilizó la entrevista en profundidad y registros fotográficos, junto a los aportes epistémicos de los Estudios de la discapacidad, Estudios de maternidad, Estudios de la ruralidad y Estudios descoloniales. Los resultados arrojaron tres categorías de análisis: Obstaculizar el acceso a una maternidad digna; Incapacitación jurídica: arrebatar la maternidad por motivo de discapacidad; Deshumanización y soledad: la espera como estrategia de resistencia para una maternidad consciente. Las conclusiones muestran que el ejercicio de la maternidad de una mujer con discapacidad que habita la ruralidad es una trinchera en donde las más audaces han subvertido la precariedad de la vida. Las estrategias descolonizadoras se traducen en la espera y pasividad como prácticas que cuestionan la comprensión colonial del tiempo.

KEYWORDS:

• Disability
• descolonial perspective
• gender
• motherhood
• rurality

Introduction

I had no support, because when we went to trial, I couldn’t do things, they treated me like just a blind woman and I didn’t have support  …  In every trial where I went it was almost always like that, my disability always affected me in that. (Las Quiscas, in-depth interview, 18 October 2022)

María is a visually impaired woman who lives in a rural area of the O’Higgins Region. She is the mother of four children, who were taken from her by the Chilean courts, citing her disability and the belief that she cannot take care of her own children. In this brief extract, María is emphatic in describing the constitution of what it currently means to experience disability and rurality. She lacked the necessary supports and reasonable accommodations which would provide her with due process as a citizen. This arbitrary discrimination represents the elements which the social model of disability (Palacios 2008) refers to as social and institutional barriers, impeding the full participation and development of people with disabilities. In this case, there were severe consequences for María since she lost custody of her children along with any chance to care for them due to her disability situation.

This is a clear example of how culture can ‘disable’ a person, in this case by impeding the full exercise of her motherhood and a break in her identity. In this sense, from a descolonial perspective, María represents a ‘defective’ female body inhabiting a laggard territory, and this intersectionality situates her in a non-human line (Fanon 2009). Therefore, she is not recognised in her particularity by the institutions of the modern colonial state, causing her to lose her condition of citizenship.

This article aims to underscore the lived experience of a single mother, María , living with visual disability in rural Chile articulated by her and mediated through photographs. This research draws from an intersection of Disability studies, Motherhood studies, Rurality studies, and Descolonial studies, to unpack the layers of oppression one has to navigate and resist in order to assert her rights as a mother with disability, a rural citizen with inequitable access to basic services, and a mother fighting for her children’s custody. Given that academic research on gender, disability, motherhood, and descoloniality are less and also mostly conducted in urban contexts, this research hopes to add to this important area of scholarship from the perspective of María .

Situating our research within wider scholarship

This research indicates structural violence faced by women with disabilities in their maternal processes/experiences, which coincides with the findings from the few other empirical studies about women with disabilities and motherhood in Chile (Herrera 2022; Rodríguez-Garrido and Yupanqui-Concha 2023; Sarmiento 2020). It also aligns with the statements from Catalina Devandas-Aguilar (2018) who explained that women with disabilities face grave, systematic violations of their human rights in the areas of sexual and reproductive health.

Our findings have been reflected in a prior study by Florencia Herrera (2022, 5) where she states that ‘their children are often removed from their care, even when these women can fulfill their role as mothers with proper support’. Along with vigilance from the justice system as in our study, mothers with disabilities are also scrutinised by the health and education systems.

This is especially problematic when considering gender roles. Andrea García-Santesmases (2023) mentions that women as caring figures – a foundational trait of motherhood – comes into question when dealing with women with disabilities. Michelle Fine et al. (1988) coined the phrase ‘sexism without the pedestal’ where they highlighted the impositions of gender particular to femininity which women with disabilities must fulfil, such as motherhood and womanhood, but also considering their simultaneous exclusion from them, as clearly expressed in this study. This means that, on one hand, there is an effort to avoid having women with disabilities become mothers at any cost, through efforts such as forced sterilisations or giving contraceptives against their will (Yupanqui-Concha and Ferrer-Pérez 2019). At the same time, when they do become mothers, their role is placed in question due to not meeting the standard of normality and the ‘good’ mother (Herrera 2022).

The aforementioned studies are consistent in highlighting the differences between experiencing disability in a female body and a male body, where women are not only denied motherhood, but also have to face selective abortions, involuntary contraception, and forced sterilisation (Yupanqui-Concha and Ferrer-Pérez 2019). Some aspects also align with María del Pilar Cruz Pérez (2014) regarding the absence of public policies which promote respect for motherhood in women with disabilities, especially within health-care sectors.

In this context, motherhood has been an important challenge for feminist disability collectives to design supportive policies and meet disability demands in Chile. Organisations such as Emancipatory Circle of Women and Girls with Disabilities in Chile (CIMUNIDIS) and the Observatory of Sexual and Reproductive Rights of People with Disabilities (ODISEX) defend the stipulations from Article 23 of the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations (UN) 2006) establishing respect for free decision on the number of children to have, interpregnancy intervals, and timely access to reproductive education and family planning (UN 2006). However, these principles have not yet been guaranteed with concrete measures.

At the international level, a study in Canada by a team of occupational therapists (Esmail et al. 2010) concluded that attitudes and perceptions among the general population about the sexuality of people with disabilities is based on stigmas which require educational efforts at the level of the entire population. Similarly, a study done in Nepal by Hridaya Devkota, Maria Kett, and Nora Groce (2019) concluded that there was a need for a social policy to increase public consciousness and decrease prejudices about sexual and reproductive rights, especially considering pregnancy, childbirth, and motherhood among women with disabilities.

A literature review (Amjadi, Simbar, and Hosseini 2016) found that in Iran, women with physical disabilities had received significantly less attention in family planning and health.

In the case of mothers with intellectual disabilities, Iva Strnadová, Jana Bernoldová, and Zdenka Adamčíková (2018) maintained that these people tend to face negative prejudices and attitudes towards their motherhood from professionals and family members. However, a Brazilian study (Santos et al. 2019) among women who had physical disabilities and were wheelchair users maintained that ignorance and prejudice from the family were not factors or any type of impediment for exercising motherhood. This shows us that the experiences of women with disabilities are heterogeneous and depend on a variety of factors. These include geographical location, social class, gender identity, type of disability, and many more. This makes it key to have more studies on this phenomenon, particularly from a situated perspective.

Motherhood and Rurality studies

Motherhood studies has been established as an epistemological study source based on the need for a genealogical review of the cultural construction of motherhood across Western history (Kawash 2011; Rodríguez-Garrido 2023). Theoretical contributions to the sociology of reproduction (Hernández and Echavarría 2016), the anthropology of birth (Blázquez-Rodríguez 2005), the history of health (Zárate 2008), and the philosophy of birth (Villarmea and Massó 2015) have provided key elements to approach motherhood from its protagonists’ own viewpoints.

In turn, studies about rurality in Chile arose from the problematisation of the developmental and progress model which communities face regarding rurality. This path has led to questioning of extractivist production of territories and their inhabitants, problems among the population in accessing better living conditions, and the forced displacements which communities suffer due to industrial settlements.

Towards the 1990s, there was a notable rise in Latin American research production indicating the severe repercussions in social welfare driven by increased globalisation (Arias and Woo 2007; Giarraca 2001; Gómez 2001). The Human Development Report (Programa de Naciones Unidas para el Desarrollo [PNUD]) (2006) also indicated the complexities arising in Chilean rurality and its territorial diversification. This is how ‘New Rurality’ arose as an epistemic turn on the way to think about rural matters and their relation with communities and territories (Bustos, Contreras, and Insunza 2021). In this sense, the ‘New Rurality’ proposes the study of the current relationship between the industrial sector, rurality, and its effects. Some examples are the socioeconomic effects of migration in communities: poverty, productive strategies, diversification, sustainable management of natural resources, among others (Rosa-Baños 2013). This epistemological turn was fundamental for reconfiguring ideas about rurality in Chile, since it helped create the National Rural Development Policy (NRDP). However, there is still a debt to be fulfilled regarding how to consider the position of women and motherhood in these contexts, especially for women with disabilities.

The historical construction of rurality in Chile has had profound implications for social relations arising from the development of centralised public policies, with a residual, delayed, and colonial comprehension of rurality in comparison with urban areas, and difficulties in access to fundamental services, to mention some issues. This has shaped gendered division of labour and the care chain, since apart from affecting social dynamics there is also an impact on the family and individual frameworks of people. The few international studies (Quezada and Huete 2017; Sarmiento 2020; Soldatic and Johnson 2017) which describe the reality of women with disabilities living in rural areas affirm that ‘the multiple identities of women with disabilities living in the rural area require a new research type which foregrounds the inequalities and subordination arising from gender, disability, and rurality’ (Don, Salami, and Ghajarieh 2015, 806). This situation helps us understand the need to carry out research that interprets reality from a descolonial perspective, to avoid reproducing prejudices and oppressions.

Descolonial feminism: considering the motherhood of rural women with disabilities¹

Yuderkys Espinoza Miñoso, a renowned activist/theorist of descolonial feminism, defines descolonial feminism as:

A movement in full growth and maturation which proclaims itself as revisionist towards the theory and political proposal of feminism, given what it considers to be its Western, White, and bourgeois bias  …  we understand descolonial feminism as gathering, reviewing, and dialoguing with the thoughts and productions developed by thinkers, intellectuals, activists and fighters, whether feminist or not, with African, indigenous, and popular mixed ancestry, peasants, racialized migrants, along with white academics committed with subalternity in Latin America and the world. (Espinoza Miñoso 2022, 31–2)

The historical and epistemic recovery promoted by descolonial feminists as a reappropriation of the body/territory can be situated within the framework of recognising motherhood among women with disabilities and their demands for greater visibility and reasonable accommodations. From this perspective, the understandings of body, race/gender, and territory comprise the essence of their epistemic development and their critique of colonial reasoning.

On this basis, we can resignify the notion of the ‘body of the disabled woman’ from the social representation which positions it as ‘deficient’, ‘deviant’, or ‘handicapped’ (Pino-Morán and Tiseyra 2019); those bodies which, from the coloniality of being, are catalogued as non-humans condemned to zones of non-being (Fanon 2009) and which are thus not valid for exercising the right to live in dignity. This coloniality is also expressed in gender roles, where women must achieve certain characteristics and essentialisms peculiar to the dominant culture, but which cannot be fulfilled by disabled women. A similar scenario arises with rurality, which is identified within the modern/colonial structure as retarded or non-productive – compared with urban zones – arising from the developmentalist bias used to scrutinise territories through the productive lens of capital. In this way, the reality of women with disabilities living in rural areas, arising from the diverse processes of ableist coloniality, remain till the present day and provide a complex reading about their position as subjects with rights in the face of a society which renders them invisible, a state which inflicts precarity upon them, and institutions which perpetrate violence against them.

Therefore, on the aforementioned grounds, we conducted a case study allowing us to explore the life trajectory of a visually impaired woman regarding her motherhood process in a rural area of south-central Chile.

Methodology

The study took place in Chile, a South American country divided into 16 regions from north to south. The empirical work took place in four south-central regions of the country, beginning with the case study of María (a pseudonym) in the O’Higgins region (commonly called the 6th Region), specifically in the municipality of Las Cabras, in the rural zone of Las Quiscas.²

According to data from the National Survey on Disability and Dependency 2022 (ENDIDE) (Ministerio de Desarrollo Social y Familia 2023), in the 6th Region 14.4 per cent of people over 18 years old have disabilities, putting it in tenth place nationwide. To perform the case study, we opted for the town of Las Cabras, given its rural population percentage of 62.71 (Municipalidad de Las Cabras 2021), which makes it strongly rural by comparison with other towns in the region.

We approached María via contact with key informants who worked as health functionaries in the Primary Health Care Center of Las Cabras, who had more knowledge of the population with disabilities within the area. This led us to contact María. This is an exemplary and complex case of how oppression of women mothers with disabilities are experienced in the rural world.

In this sense and considering descolonial feminist epistemologies (Curiel Pichardo 2014; Espinoza Miñoso 2010), this study opted to recognise the diversity and dignity by respecting the construction of knowledges and insights from the participant. Our intent was thus not to generate a representative framework of the reality of women with disabilities, but rather to grant value to experience as the result of unique, complex, and constantly developing processes.

From this ethical and epistemological perspective, we situate ourselves as two non-disabled researchers inhabiting a rural environment, who enter into a complex power relations matrix. We do not wish to ignore these asymmetries; rather, we aim to make them transparent with the protagonist herself, a matter which aids in recognising her agency and decisions. Another relevant point to mention is related to the translation exercise, which is controversial for us as Latin American researchers who work on critical and descolonial positions, since, on the one hand, the contribution to English-speaking science is valued, but on the other, legitimacy is given to scientific hegemony, ‘losing’ cultural elements of the territories.

The first contact with María on the telephone let us converse with her and explain the importance of this study and how she might participate within it. Afterwards, during an in-person meeting at her home, she showed us her daily environment and presented us the members of her family who lived with her, always showing an inclination to share and touching on how significant it was to have a sufficiently protected space to reflect on her life trajectory.

Situated within this framework of recognitions, we could forge alliances and build the chance to overcome pathological and colonial research on disabilities, giving way to a committed and collaborative study which might move towards a descolonisation of practices and knowledge, by laying bare the power structures and inequities embedded in vulnerable research. Nevertheless, we recognise that these perspectives are not exempt from their own tensions and conflicts, peculiar to the coloniality of ability in research (Ferrari 2020). However, the experiences which the researchers underwent with collectives, associations, and movements by and for people with disabilities reflect and illustrate the ethical-political commitment with the research problem. In this study, we advocate for the rise of anti-ableist epistemologies which recognise the knowledge and experience arising from the full range of diversity and human differences within Latin America (Pino-Morán, Rodríguez-Garrido, and Lapierre 2023).

A case study method was used, since it lets us recognise, via subjective experiences, the life trajectories of people – or a singular person – via an approximation to their social, family, political, economic, and geographical context. It is defined as ‘the study of particularity and complexity in a singular case, in order to comprehend its activity in important circumstances’ (Stake 2007, 11). One core characteristic is that it ‘intensively approaches a unit, which can refer to a person, a family, a group, an organization, or an institution’ (Stake 1994, 236–247).

Robert Stake (2005) identified three types of case studies: intrinsic, instrumental, and collective or multiple. For our present purposes, we will follow the intrinsic type, since it ‘intends to achieve better comprehension of a concrete case for a particular interest. This is important in itself, for its particularity, something extraordinary, and not to understand an abstract or generic concept, or because one intends to construct a theory’ (Stake 1994, 445–7).

For the case study, we opted for two information co-construction techniques: in-depth interviews and photographic records. We used in-depth interviews because they allowed for up-close and situated identification of social representations ascribed to people to a particular reality. Its personal and intimate character allows for dialectic interactions which can respect times, needs, movements, and reflections, while also providing greater freedom during the encounter without being stuck to a strict question-based script (Taylor and Bogdan 1992).

The interview was co-ordinated first by telephone call and then by WhatsApp. Two face-to-face meetings took place, which lasted for around two hours each. The conversation was recorded on a mobile phone. The flexibility of the interview was positively evaluated by María, since it respected her bodily diversity and generated more ease and relaxation during the conversation. We discussed informed consent with María along with a detailed explanation of the importance of her participation in the study, as well as the study objectives and purposes. After signing consent, the interview began.

María chose to have the interview in the patio of her home, at a date and time convenient to her. No technical assistance was needed.

The interview took place along five dimensions:

1. Background regarding her disability.

2. Habitability in the rural territory.

3. Family dynamics regarding her disability.

4. Exercising motherhood and its relation with rurality.

5. Relations with neighbours and the community.

The other technique chosen was photography, since it acts as a ‘catalyst of experience, as a capturer of symbols and especially powerful metaphors, which brings into our consciousness those elements which cannot be made operative through verbal language’ (González Gil 2008, 6).

Photographic records allowed us to recognise the environment and context where María lives, its relationship with her disability, and the body language related to the occupation of space/time during the interview, as indicated by the sociology of images regarding the use of photography as a reality approximation technique. This is because it ‘considers all representation practices as its focus of attention; it is directed towards the entire visual world  …  along with other, more collective representations such as the structure of urban space and the historic marks which become visible within it’ (Rivera Cusicanqui 2015, 23).

The pictures taken were approved by María, through the reading and subsequent signing of informed consent with detailed explanations of the nature of the records, their use, and their confidentiality. We took the pictures with a mobile phone which had a high-resolution camera. They corresponded to the surrounding environment, and to the hands and lower torso of the participant. Out of respect, no photographs were taken of the face of María or the other people living in the place.

The study was approved by the Ethics Committee at Universidad de O’Higgins (IRB: 024-2023). The criteria adopted by the Singapore Declaration (Comisión Nacional de Investigación Científica y Tecnológica (CONICYT) 2013) gave responsible and integral guidance to the execution of this study. Special care was taken with providing information to the participant.

Confidentiality, safety when applying research techniques, and anonymity were applied. Adequate informed consent was given to the participant. We explained the purpose of the study in detail, along with its implications, its voluntary nature, and any other doubts arising during the process.

During the entire research process, we consulted the Standards for Reporting Qualitative Research (SRQR) guide (O’Brien et al. 2014)³ to ensure a methodologically rigorous study. For the interview data analysis, we used qualitative thematic analysis via the six phases proposed by Virginia Braun and Victoria Clarke (2006). During the first phase, ‘familiarisation with the data’, we textually transcribed the interview. In the second phase, ‘generating initial codes’, we performed a general data encoding. The third phase, ‘seeking themes’, involved encoding all the data to be analysed, followed by classification from the most general to the most specific. Phase four, ‘thematic review’, involved reading all the quotes selected for each code. Phase five, ‘defining and naming themes’, consisted of identifying the central analysis categories and internal coherence. The sixth and final phase, ‘report production’, was a description of the results via the central analysis categories. For the data analysis process, we used the Spanish version of ATLAS.ti software.

In turn, for photographic record analysis, we used the position of Félix Del Valle (1993), who identified two analysis levels: one aimed at morphological image analysis, which studies technical and compositional aspects of the record, along with its characteristics and precisions; and another, directed towards image content. In this aspect, both the evident and non-evident elements are analysed, with the latter involving epistemic approximations developed during the beginning of the article. In other words, this means that we analysed the specific content that appears in the image along with the not so ‘obvious’ elements, which allow other interpretations to be attributed to the images with the help of theoretical elements.

This led us to the following analysis categories: Impeding access to dignified motherhood; Legal incapacitation: denying the right to exercise motherhood because of disability; and Dehumanisation and loneliness: waiting as a resistance strategy for conscious motherhood.⁴

Results

About María

María is 37 years old and lives in an area called Las Quiscas, a rural sector in the municipality of Las Cabras, within the 6th Region of Chile. She started to develop vision problems at age six, which became worse to the point of almost total blindness (80 per cent). Despite this, she uses no technical assistance. She did not finish her schooling, which is common in rural areas of the 6th Region due to the economic incentives towards working in the fields from an early age.

María lives in the house of the parents who raised her after her biological parents died, together with her current husband, her brother, and a member of her adoptive family. The latter is a senior citizen whom she decided to take care of as a form of thanks for letting her live in the house. María, apart from owning her own home, has her own business selling sportswear.

She has been married for three years and spent 10 years with her partner. She has four children: one daughter who is 20 years, and three sons aged 18, 17, and 14 years. She currently only has contact with her oldest daughter, since her other children live with their biological father and paternal grandmother, ever since the mother lost custody, which is addressed in more detail in the results.

Analysis categories

Impeding access to a dignified motherhood

Motherhood is a biological, social, and cultural process which requires guaranteed conditions for a free and dignified experience. However, within a modern/colonial/developmentalist and ableist logic state, abandonment is tolerable for certain groups of people, especially those who live in rural areas. Whenever the conditions for exercising motherhood among women with disability in rural areas are questioned, it is visualised as a task to be carried out, or as demands to include in forthcoming programmes. It is thus habitually the objective of possible future policies, and upon execution these tend to be top-down policies without further participation from people with disabilities.

In the binary logic of urban/rural, male/female, production/reproduction, abled/disabled, the latter spaces, processes, and bodies are always devalued, shifting the responsibility of care to the women themselves who must manage their own lives within a private, individualistic social and economic framework. This study was able to approach the contextual, social, and cultural itinerary which a blind mother must face in a rural zone. This lets us appreciate how her family environment is constructed, marked by complex life situations, with early management of a family relocation and the first signs of her disability taking shape. María described it this way:

My mom died when I was a year and a half old, and my dad never took responsibility for any of us. So then, since I was a girl and the rest were all boys, the others didn’t have so many problems, but for me, well, they needed someone to care for me and take responsibility. (Las Quiscas, in-depth face-to-face interview, 18 October 2022)

My parents died, both my mom and dad, and then I got adopted. By the family I live with here. They’re the parents of my heart. My mom departed a month ago [died]. My dad went a year ago. So then, since I came here when I was six, they took me to an ophthalmologist for the first time, and by then I already had trouble seeing. (Las Quiscas, in-depth face-to-face interview, 18 October 2022)

So, I started having problems then, and it got worse every day because in all the schools, especially the rural ones, there weren’t any ophthalmologists then. So instead of helping me with the eye problem, the disease got worse all the time, and after childbirth it was even worse. I went to different places. The city government helped me a bit sending me to Santiago, but by then there wasn’t any way to fix my sight. (Las Quiscas, in-depth face-to-face interview, 18 October 2022)

In this family and social context, we can notice the trouble with accessing medical specialists, a very common situation in rural areas which only have generalised medical care. Along with this, we can consider basic service access and connectivity which are often impeded in these spaces, as María described:

I went along the back rounds, because there’s a way that, to not take the highway, you can take the line road, is what they call it. It’s a dirt road, and that’s how I went to school. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

There’s no store near here. The other one’s in Las Quiscas, but they’re just little kiosks. You’ve got to have a car here, because otherwise you’d have to walk as far out as you did, to the highway. More than a luxury, it’s a necessity. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

The highway which María mentions appears in Figure 1. It is well known in the region for being hazardous due to the high flow of trucks circulating to and from the major port of San Antonio. The highway is located 5 km from where María lives. In order for her to take her children to school, buy basic goods, and access medical care or other services, she must either walk or find someone who can take her there, with all the problems involved concerning safety and accident risks.

These experiences let us see how her identity and her life trajectory have taken shape over the years. It helps us visualise all the barriers, and resistances which women with disabilities must build up, starting at an early age. These barriers are not only physical, but also cultural and institutional. One milestone in this story is related to the ties between María and the Chilean justice system, concerning a child custody dispute.

Figure 1. Las Cabras, 18 October 2022. Photograph by Pía Rodríguez-Garrido.

Legal incapacitation: removing motherhood due to disability

One of the most violent events which María has faced was related to her ties as a citizen to state institutions, specifically the judicial system. In this case study, one event had a profound impact on her motherhood. This takes place within the framework of a lawsuit over custody of her children, arising from recurring episodes of intra-family violence which María faced from the father of her children and which led to her separation from him. María recalled the process in this way:

They discriminated against me in the trial too. I was discriminated against a lot, for many years, and by people I knew. I even started complaining and I left. I left it all there and went away. I wasn’t going to put up with them treating me like that. Those were pretty much the two times. During the trial, and then after in that mediation thing. It was also because she [the professional] started bringing up the topic of my vision, so they were always just bringing that up instead of other things. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

I think I didn’t have support in that, because when we went to trial and said I couldn’t do things, they treated me like a blind person, and I didn’t have any support. Well, maybe you make mistakes, but it wasn’t that much. In almost every time I went to the trial it was that. My disability always affected me that way. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

As indicated in the definition of disability from the UN, the barriers and obstacles which society imposes are what lead to disabling people. In this case, the state of Chile, through its institutional apparatus, did not protect the safety of the children of María, granting custody to her ex-partner, who had been reported in prior cases for physical and psychological abuse against her. As seen in Figure 2, María wound up ‘behind bars’, impeded from exercising her legitimate maternal rights.

Figure 2. Las Quiscas, 18 October 2022. Photograph by Pía Rodríguez-Garrido.

After the traumatic episode of losing custody over two of her four children and the chance to care for them, María repeatedly tried to arrange visits or have some type of contact with her children, which was always denied. As she said:

I asked for visits, and their grandma came out against me. She said I couldn’t look after them right because of my eyesight, so she was always on about that. I think that still affected me up to now. I don’t know anything about them today. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

The disability justification was used as a legitimate argument by the state and the family of her ex-partner, leading to a vicious cycle removing any possibility of a dignified exercise of motherhood on her part. María recognised the major impact of this traumatic experience in her life, since she was not only deprived of the right to exercise motherhood, but also faced discrimination on various occasions because of her disability. She commented with great distress:

I wish they’d never taken the kids from me, and they’d been with me. I think that’s my greatest sorrow, and I don’t know if I’ll ever get over it. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

This life story gives an account of an important finding, which supports the idea that women with disabilities are not good mothers, so the Chilean justice believes that María’s children are better cared for by their biological father, the same man who physically and psychologically abused her.

The ties between María and various public institutions of the Chilean state, represented in Figure 3 through the national flag which paradoxically flies in her home, have been violent. She was denied care from specialist physicians due to being poor, she was denied motherhood because she was blind, and her access to education was impeded due to living in the countryside.

Figure 3. Las Quiscas, 18 October 2022. Photograph by Pía Rodríguez-Garrido.

From the prism of descolonial feminism, the intersectional configuration of gender, poverty, rurality, and disability shape an experience of systematic violence within the hierarchical order of the patriarchal and colonial world system.

Dehumanisation and loneliness: waiting as a resistance strategy for conscious motherhood

One consequence of systematic oppression is the internalisation of a deteriorated identity which gradually dehumanises people themselves, as indicated by the gradual loss of community networks and social supports. As María describes:

They’ve known me for years, but here, some of them know about my vision, and others don’t. I don’t have a lot of contact with the neighbours here, even though they’ve known me since I was a girl. There’s just one neighbour who stops in to see how we are. Look, not even when my mom was around, a senior citizen who lived 37 years here and had Alzheimer’s for a year, they never came to ask after her. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

This dehumanising context becomes worse with the transformations arising from migration out of the countryside towards the cities, and changes in socialisation networks within the rural world regarding their sense of belonging. Many people with major disabilities thus face a context of loneliness and abandonment, as María describes:

Yes, and they’ve known me since I was a girl, but there isn’t any closer bond and a lot of new people have come in here, plus all the old-timers who knew me are gone now [dead]. Some of them probably don’t know about my disability. That’s what’s happened. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

In these dehumanising contexts, memories rise up to explain her position of motherhood in resistance. This position implies gathering information about the situation of her children in an informal manner via common contacts. María offered some reflections:

I don’t know anything about them now. I know they’re in high school. The other boy, I don’t know, the smallest one, because he isn’t living with his grandma. He isn’t with his dad, and I don’t know where he is, and the only one who’s stayed with me the whole time is my daughter. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

The other thing is that I have two sons who also have eyesight problems, and I don’t know if they’re taking them for treatment. I don’t know anything about that. My daughter’s got myopia too, but it’s under control. I have a son, the middle one, and he’d lost an eye. I don’t know if they’re still checking on it, because I was the one who brought him in. I don’t know if they took him for a check-up, I don’t know. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

In summary, her loss of custody is based on an assumption that an ‘able body’, in this case a male body through the figure of the father, has sufficient and necessary competence to provide adequate care and upbringing. State institutions assume this as a legal capacity to exercise the role of father in a responsible way.

Finally, there is the hope that in the future she can meet with her children again and explain everything that happened, understanding that her story has been silenced and denied throughout this entire process:

I say that someday, they’ll realise how things were, and how I was 100 per cent worried about their school and everything. Even with how little I had, because I just had my pension and nothing else, and he didn’t help either [ex-partner]. They never gave me a pension, and in the end, I came out losing. (Las Quiscas, in-depth face-to-face interview, 28 October 2022)

This position of resistance indicates that, despite having lost her right to motherhood, survival strategies persist, bearing up with the present and looking hopefully towards the future, which we articulate as ‘conscious motherhood’. Waiting, as we can infer in Figure 4, does not mean passivity in the life of María, but is instead a strategy which places time as a moderator between her and her children. Time will show that she was right, appealing to its dynamic and non-linear sense as indicated by descolonial feminists, since as María says, ‘one day they’ll realise how things were’.

Figure 4. Las Quiscas, 18 October 2022. Photograph by Pía Rodríguez-Garrido.

Conclusion

This case study indicated total abandonment of a woman with visual disabilities in a rural community by the state of Chile, which arises in a series of matters related with the citizenship of the participant. For instance, in the social protection area, María faced a series of obstacles to accessing fundamental services including health (access to specialist doctors), housing (access to a home of her own), and education (access to schools with inclusion programmes).

Exploring the life trajectory of a woman with disability in her motherhood process and the experience of living in a rural environment allows us to descolonise the knowledge of a reality which is precariously approached by both academia and public policies. In turn, it provides evidence for the institutional violence which María faced during the trials over custody of her children, due to losing the right to care for them on account of her disability.

Her motherhood has been repeatedly placed in judgement due to the negative, infantilised representation of women with disabilities which results in the denial of legitimate exercise of their motherhood. In this regard, her blindness has been a motivation of discrimination and inferiorisation from both the larger society and the institutions of the state which have rendered her disabled across her entire lifespan.

Country living has not been easy for María. From the perspective of descolonial feminism, the territory has major face value due to favouring ties and care. However, there are greater complexities. In this case, country–city migrations and generational turnover have altered the dynamics with her neighbours, which has increased tensions in community relations.

Ultimately, we can visualise waiting and passivity as descolonising strategies based on the practices which question the colonial, and therefore linear, comprehension of time and a way to reclaim and reown the future.

Despite the challenges involved in performing this study, one of its strengths was allowing us to know about the situated experience of a women with visual disabilities in a rural context in Chile. This matter opens up an unexplored field for Disability studies and Motherhood studies, especially when using an analysis based on descolonial feminism which can interpellate the ableist/sexist/colonial/modern logic which consider women with disabilities to be dependent, lesser-than, or unable to exercise their right to motherhood.

Acknowledgements

We are grateful to María for entrusting us to show part of her life trajectory in this study. Thanks to Ian Scott Kinney for translation and interpretation. Thanks to the National Research and Development Agency (ANID) Millennium Science Initiative Program (NCS2022_039).

Additional information

Funding

This work was supported by a Fondecyt Post-Doctorate of 2023 from the National Research and Development Agency (ANID) [Folio #3230576].

Notes on contributors

Pía Rodríguez-Garrido

Pía Rodríguez-Garrido is a Postdoctoral Researcher at the Instituto de Ciencias de la Salud in Universidad de O’Higgins, Chile. She is also a Researcher at the Women, Health and Ethics Study Group, University of Barcelona, Spain; a Researcher at the Laboratório de Estudos Sociais sobre o Nascimento, nascer.pt, Instituto Universitario de Lisboa, Portugal; and a Young Researcher at the Millennium Nucleus Studies on Disability and Citizenship (DISCA), Chile. Postal address: Av. Libertador Bernardo O’Higgins, 611, Rancagua, 2820000, Chile. Email: [email protected]

Juan Andrés Pino-Morán

Juan Andrés Pino-Morán is an Assistant Professor at the Instituto de Ciencias de la Salud in Universidad de O’Higgins, Chile. He is also a Researcher at the Critical Disability Studies Group in Consejo Latinoamericano de Ciencias Sociales (CLACSO); and Principal Researcher at the Millennium Nucleus Studies on Disability and Citizenship (DISCA), Chile. Postal address: Av. Libertador Bernardo O’Higgins, 611, Rancagua, 2820000, Chile. Email: [email protected]

Notes

1 We opt to use the term ‘descolonial’ politically, in line with the statements from Ramón Grosfoguel and Walter Mignolo (2008, 34) when they said that ‘descolonial thinking, living in a descolonial way, working in the descolonial option (understood in its singular profile, although manifested in various ways according to local history), thus means to embark on a process of leaving behind Eurocentric knowledge bases (as Aníbal Quijano says) and thinking by making knowledge which illuminates the dark zones and silences arising from a form of knowledge whose horizon was imperially constructed’.

2 This study is part of a larger project, called ‘Women with Disabilities and Their Motherhood Processes (Gestation, Birth and Postpartum): Experiences in Rural Environments of Chile’ within the framework of the Fondecyt Post-Doctorate of 2023 from the National Research and Development Agency (ANID) [Folio #3230576].

3 The SRQR consists of 21 items. The list aims to improve the transparency of all aspects of qualitative research by providing clear standards for reporting (O’Brien et al. 2014).

4 Conscious motherhood refers to the ability of María to face a traumatic event such as losing custody of her children and being denied her right to maternity and care. In turn, it represents an attitude of trust and hope that time will let her reforge the bonds and ties with her children. Conscious motherhood is thus the type of maternity desired by María, which provides meaning in her life, and one she is waiting to unfold in the future.