Introduction

Access to sexual and reproductive health services is a human right; physical, mental, and social well-being across the life course cannot be achieved without ensuring access to such services. According to the 2004 World Health Organisation’s (WHO) Reproductive Health Strategy, there are five core aspects of reproductive and sexual health: ‘…improving antenatal, perinatal, postpartum, and newborn care; providing high-quality services for family planning, including infertility services; eliminating unsafe abortion; combating sexually transmitted infections including HIV, reproductive tract infections, cervical cancer, and other gynaecological morbidities; and promoting sexual health’ (World Health Organisation, 2022, p. 5).

While sexual and reproductive health services are essential for ensuring the health and well-being of individuals, violations of the rights of women’s sexual and reproductive health are frequent. Particularly in the case of women facing multiple structural disadvantages, for example, due to ethnicity, religion, poverty or disability, such violations may occur more often (Cavalcante, 2018).

One type of a severe form of violation of the rights of women’s sexual and reproductive health is gynaecological and obstetric violence. There is a significant association between this type of violence and minority group membership, underlying that violence against women in health settings reproduces the most deeply rooted social prejudices (Cárdenas Castro & Salinero Rates, 2022). This is particularly the case concerning women with disabilities (Wudneh et al., 2022), who in some cases, when they do have access to healthcare services, may experience gynaecological and obstetric violence (Brown, 2021).

The current article explores the experiences of women with disabilities with regard to gynaecological and obstetric violence in Chile. The term ‘women with disabilities’, as used in this paper, follows the definition of ‘disability’ used by the Convention on the Rights of Persons with Disabilities (CRPD) and refers to women who have long-term physical, mental, intellectual, or sensory impairments that, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others (United Nations General Assembly, 2006).

Gynaecological and obstetric violence has been defined as a combination of gender-based violence, that is, targeting women just because of their sex, and institutional violence, which can occur when people confront the attitudes, beliefs, and practices of established organisations that are employed to marginalise or exploit vulnerable populations. It is.

“…an umbrella term that encompasses a variety of demeaning, violent, and harmful practices, perpetrated during all types of gynaecological and obstetric care. As such, it can happen throughout the lifecycle, when seeking gynaecological examinations, access to contraception, fertility treatments, abortion care, after miscarriages, during pregnancy, and during and after childbirth” (International Planned Parenthood Federation European Network, 2022, p. 2).

This structural form of violence has resulted in the dehumanisation of healthcare, and public health, and has led to economic, social, ethical, and moral problems (Brigidi et al., 2023).

International studies have shown that women with disabilities have worse access to healthcare services in general (Matin et al., 2021; Sakellariou & Rotarou, 2017a, 2019), lower rates of undergoing preventive healthcare services, like mammography or the Papanicolaou test (Mcilfatrick et al., 2011; Sakellariou & Rotarou, 2017b, 2019), and lower rates of accessing sexual and reproductive services, for instance fertility treatments and contraception (Agaronnik et al., 2020; Kazembe et al., 2022; Soule & Sonko, 2022). These inequities in healthcare access that women with disabilities experience can lead to adverse health outcomes, such as higher risk of maternal mortality and severe maternal morbidities, such as severe preeclampsia/eclampsia, haemorrhage, fever, cardiovascular events, infection, and caesarean delivery (Gleason et al., 2021).

In Chile, according to the 2022 Third National Disability Survey (ENDISC III), 17.6% of the population aged 18 and over has a disability (2,703,893 people). There is a higher percentage of women than men with disabilities (21.9% vs 13.1%, correspondingly), evidencing the gender dimension of disability (National Service of Disability [SENADIS] & Ministry of Social Development and Family, 2023). Concerning access to sexual and reproductive health, research in Chile has shown low levels of access by women with disabilities, in comparison to women without disabilities (Carvajal et al., 2021; Hichins-Arismendi & Yupanqui-Concha, 2022; Rodríguez-Garrido & Yupanqui-Concha, 2023; Sakellariou & Rotarou, 2017b).

According to Article 25 of the CRPD, to which Chile has been a signatory since 2008, persons with disabilities have the right to enjoy the highest standard of health without discrimination based on disability. States Parties ‘must provide persons with disabilities with the same range, quality, standard of free or affordable healthcare and programmes as provided to other persons, including sexual and reproductive health services, population-based health programmes and other health services’ (United Nations General Assembly, 2006, p. 15).

Nevertheless, civil society organisations, through their shadow reports on Chile’s implementation and advancement of the CRPD by the Committee on the Rights of Persons with Disabilities, denounce multiple discriminations and violations of sexual and reproductive rights of this population and the limited research that has been undertaken on the issue (CIMUNIDIS & ANUSSAM, 2020). Additionally, the Chile report expresses concern about the lack of available data on the sexual and reproductive health of people with disabilities (Government of Chile, 2022).

Despite evidence of violations of the sexual and reproductive rights of women with disabilities (CIMUNIDIS & ANUSSAM, 2020), research on gynaecological and obstetric violence experienced by these women is very limited (Arias et al., 2022), with most existing research focusing only on obstetric violence (de Valverde Terra & Harmatiuk Matos, 2019). In the case of women with disabilities, the few existing studies explore only the obstetric dimension of violence (Rice et al., 2021; Rodríguez-Garrido, 2023; de Valverde Terra & Harmatiuk Matos, 2019; Wudneh et al., 2022), showcasing the invisibility of women with disabilities in obstetric research and clinical practice (Brown, 2021). At the national level, statistics on obstetric violence also do not consider this population (Salinero et al., 2023), while statistics on disability do not consider the variable of gynaecological and obstetric violence (SENADIS & Ministry of Social Development and Family, 2023).

To the best knowledge of the research team, to date there are no studies focussing on gynaecological and obstetric violence faced by women with disabilities, either in a national or international context. The objective of this article is to analyse the experiences of gynaecological and obstetric violence that women with disabilities may undergo in Chile, underlining their leading role as experts by experience. It is also aimed at offering policy recommendations that could be applied not only in the Chilean but also in an international context, with the goal of reducing and eventually eliminating gynaecological and obstetric violence.

Method

Design and Theoretical Basis

This study is part of a qualitative research design, since, through its meanings and representations, it seeks to delve into ‘a series of elements that belong to the field of the symbolic, meanings, subjectivities and intersubjective processes, an issue that, without a doubt, is connected to social action and transformation’ (Aliaga Sáez, 2022, p. 11). Its flexible character allows us to ‘reclaim the place where we are observing the evolution of knowledge’ (Aliaga Sáez, 2022, p. 12) and listen to the voices of women through their own personal experience.

This is in tune with the feminist phenomenological paradigm of research, which recognises itself as aware of the experiences and subjectivities of people, as it considers them fundamental in the processes of identification, both individual and collective. In that sense, adopting a feminist phenomenological view entails a reflective and political exercise that goes beyond the mere incorporation of topics such as gender, reproduction or sexual diversity, but rather involves elucidating how these topics and others are critically analysed, by bringing into focus the three central axes of traditional philosophy and feminist theory: (a) biological determinism, (b) body/mind dualism, and (c) universalism (Vasterling, 2000).

Regarding biological determinism, this paradigm is based on the universal and essential claim of the sexes, that is, how the culturally acquired patterns of male and female behaviour respond to purely biological conditions. This would justify the social categorisation of women with disabilities as second-class citizens, because they do not meet the standards of biological ‘normality’, which is typical of women without disabilities.

On the other hand, the body/mind dualism is a philosophical heritage that is based on people’s subjective fragmentation of the body. Under this paradigm, forced sterilisations are carried out on women with disabilities without their consent, since they are seen as incomplete, unfinished bodies, not suitable for motherhood or the care of children. As a result, the use of forced sterilisations is justified, in order to prevent possible pregnancies.

Finally, universalism is based on the homogeneous and absolute understanding of human beings, based on the Aristotelian idea of the ‘human being’, as a man, white, free, with the right to express himself and vote. Under this understanding, not all ‘human beings’ are worthy of the human condition, leading to the exclusion of women, slaves, racialised people, and people with disabilities. According to this paradigm, women with disabilities do not meet the conditions of being human.

Thus, feminist phenomenology allows us to question the social dynamics that establish differences and inequities and that, consequently, violate and marginalise a large part of the population. The paradigm of feminist phenomenology provides a critical and situated reading of the complex reality of women with disabilities, since, as del López Sáenz (2014) mentions, this research focuses on ‘the lived experience (Erlebnis) of the body (Leib), of the world of life (Lebenswelt), of the sense (Sinn)…[it becomes] a philosophy that demands the consideration of subjects of each and every one of the human beings, subjects that have experiences and give meanings’ (p. 45–46). In this way, this methodological framework allows us to identify and analyse the experiences of gynaecological and obstetric violence experienced by women with disabilities, in a reflective way.

Context of the Study

This study was conducted in Chile. According to the World Bank, Chile is recognised for its strong institutional and macroeconomic framework, as well as for its economic progress, which positions it as a high-income country (World Bank, 2023). Politically and administratively, Chile is subdivided into 16 regions from north to south, with the regions of Arica and Parinacota (to the north) and Magallanes and Chilean Antarctica (to the south) being the most extreme. The participants at the time of the study lived in the regions Valparaíso, Metropolitana (where the capital, Santiago, is located), Maule and Magallanes (see Table 1).

Table 1 Sociodemographic characteristics of participants
Full size table

Approaching Participants and Ethical Considerations

The sampling methods employed in this study were intentional and snowball sampling. Inclusion criteria were adult women who identified as activists or representatives of national organisations of persons with disabilities and had a type of disability themselves. These criteria were employed, on one hand, due to the difficulty in finding women willing to share their experience on such a sensitive subject as gynaecological and obstetric violence and, on the other hand, due to the need to approach women who are knowledgeable about these practices within their organisations. Exploring the history, experience, and subjectivity of these women is key to understanding their reality and generating knowledge (Biglia & Vergés-Bosch, 2016).

Potential participants were contacted by telephone and email. The women who agreed to participate were added to the study sample and were asked if they knew other women with disabilities who were interested in sharing their experiences (Morgan, 2008).

Once the first contact was made, the day and time of the meeting with the study’s principal researcher (first author) were arranged. Of the 35 women who showed interest in participating, 18 ultimately accepted. The reasons why the remaining 15 women did not participate were the short time available and the fear of delving into unpleasant experiences for them.

During the initial contact, participants received all the necessary information about the study in an accessible format. The written informed consent included the following information: study’s purposes, principles, implications, and the availability of technical aids in case they required it. All participants were assured that confidentiality and anonymity would be safeguarded and consented to the recording of the interviews and the publication of the results. The Declaration of Helsinki (World Medical Association, 2013) on the ethical principles concerning the protection of human participants in research guided the study and interaction with the participants. The Ethics Committee of the University of Illes Balears approved the research (IRB 1541/2017).

Characteristics and Selection of Participants

Table 1 presents the sociodemographic characteristics of the 18 participants. As it can be observed, the participants at the time of the study were on average 47 years old. Most women had visual disability (33.3%), hearing disability (22.2%) or physical disability (16.7%). Almost all women (n = 17) were insured with the public health insurer (FONASA); only one woman had private health insurance (ISAPRE). This is particularly relevant in the Chilean context, if we take into account the two-tier health system that currently exists in the country, where people with private health insurance—who are generally of a higher socioeconomic status—enjoy better access to health services than people with public insurance.

Data Collection

In-depth, semi-structured interviews were used, which allowed for the exploration of women’s trajectories and life experiences in a more profound way, always considering the diversity of participants’ embodied experiences (Flick, 2004). The interviews were accompanied by an indicative script of questions, which was modified and adapted according to the needs of the fieldwork. The thematic guide included dimensions that promoted the participants’ narration of their own experiences related to (a) practices that violated the sexual and reproductive rights of women and/or girls with disabilities, (b) personal and institutional attitudes towards such practices, and (c) procedures through which such practices were implemented.

The study’s principal researcher (first author) conducted the interviews between March 2017 and December 2018; these interviews were carried out through video calls and lasted 1 h and 15 min on average. Throughout the interviews, accessibility measures were considered, according to the needs of each participant. All participants were informed that the interviews would be recorded, transcribed verbatim, and analysed.

Analysis of Information

The data were analysed using the thematic analysis technique, following the steps of Braun and Clarke (2006). The information was processed with Atlas.ti software, version 23 (License ID: L-C7B-F41). Data analysis was carried out in six phases: (1) familiarisation, (2) code generation, (3) topic generation, (4) topic review, (5) citation selection, and (6) report writing. To this end, three researchers from the team familiarised themselves with the data and interpreted and coded them separately, according to the study’s objective. Then, through a collaborative and iterative process, the codes were discussed and modified by the three researchers and the team, following an inductive approach so as to develop the initial coding frameworks. The researchers reviewed, interpreted, and presented the data continuously to ensure a complete representation and interpretation of the team’s views. Some comments were assigned to multiple codes and contributed to more than one topic. Subsequently, the codes were grouped and categorised according to the thematic content, creating initial topics and developing the analysis. Citations were selected for each subtheme, supporting its definition. Finally, the topics were discussed with the research team and the final results were agreed upon by all the members. Three researchers completed the final writing of the analysis.

Methodological Rigour Criteria

Throughout the process of research preparation and development, as well as the drafting of the final document, the Consolidated Criteria for Qualitative Research Reports were employed (Tong et al., 2007).

Results

The results fall under three central categories: (1) health inequity in communication, (2) objectification of girls’ and women’s bodies through practices, such as forced sterilisation, and (3) intimidation and discrimination related to maternity.

Health Inequity in Communication with Women with Disabilities

The interaction between women with hearing disability and health professionals depends on lip reading and written notes to deliver information during sexual and reproductive healthcare service. Without enabling both strategies, it is impossible to establish adequate communication.

Through the stories of women with disabilities during medical consultations, experiences of frustration and insecurity were evidenced, underlying their invisibility and lack of recognition as subjects of rights. Cases of violation of privacy and lack of accurate information are often found. This is what a participant pointed out:

At first I went with my mom, the first time, because I knew that in Punta Arenas city they do not respect deaf people. For example, if I want to read lips or they can write to me and they don’t, neither of them (...) I prefer to go alone so that they can explain things to me, because when I go with my mom they tell her things and my mom doesn’t tell me everything, she gives me a summary. And I want to know everything, because it’s my health, about myself, so I go more often alone. (Woman with hearing disability, 27 years old, no children)

As manifested in the accounts of women with hearing disabilities, having a sign language interpreter during sexual and reproductive healthcare services is a human right enshrined in the legislation. Daily experiences showed the denial and absence of this communication support from health institutions. This is how these participants described their experience:

I would like to say that communication through an interpreter is needed because it is difficult to be alone, when nobody accompanies you, it is difficult, I do not understand. For example, when I go to the gynecologist, even when I go to check my ears, I do not understand anything, they do not communicate, and they are also covered with the mask. (Woman with hearing disability, 39 years old, no children)

I know that it is difficult to ask for an interpreter, because I know that they are going to be delayed, an hour, two hours or until the next day, and I do not want to waste my time. I believe that every clinic [Primary Health Care Center] should have at least one nurse who knows sign language, not a professional interpreter, but everyone should learn it. (Woman with hearing disability, 27 years old, no children)

The continuous control and manipulation of the needs of women with hearing disabilities during gynaecological and obstetric care by health professionals is a recurrent issue, in addition to the absence of fundamental information during health services, which is key for informed decision-making on sexual and reproductive health. This is how these participants expressed their experience:

It is disrespectful not to understand that I need someone to interpret for me. When my baby was going to be born they wouldn’t let my family in, that made it very difficult for me, it was a barrier. The professionals only understood that I needed an interpreter when my son was born, but not before (...) 3 people, 3 people who did not understand that I needed my interpreter (...) We do not understand in the same way, I need an openness, I feel bad and it is very difficult to have an interpreter, it is very difficult. (Woman with hearing disability, 36 years old, one child)

I’m going to tell you when I was pregnant with my daughter. In 2006 I had an abortion and they never explained it to me in the emergency room. My mom didn’t believe me I was pregnant, and I went to the gynecologist [name], (...) and I had an tubal pregnancy and my tubes were removed. (Woman with hearing disability, 27 years old, no children)

Sexual and reproductive healthcare services for women with disabilities are limited in Chile. The lack of disability training and capacity building of health professionals leads to lack of knowledge and skills on how to interact with people with disabilities who seek health services and to an excessive use of technical language in healthcare. A participant pointed out that:

Because the midwife of the polyclinic [Primary Health Care Center], for example, they are very bad, very old, does not understand me. I left no more, I don’t like to go to [name of health service], I don’t feel well, I feel weird. My daughter, for example, when she was 9 years old, in 2017, my daughter had vaginal flow, and I was worried because they called me from school saying she felt bad. We went to the private doctor and the doctor never spoke to me, he didn’t say anything, he didn’t ask me anything and I asked my daughter. A month later I went to the polyclinic to see what happened to my daughter’s, because nobody told me anything and I should know what was happening, and in the polyclinic nobody explained anything to me. (Woman with hearing disability, 37 years old, one child)

Reasonable accommodation in healthcare involves modifications in healthcare procedures and environment that are needed in order to address the needs of people with disabilities in their effort to access healthcare services. The information needs of women with disabilities are often not satisfied, depriving women of relevant information about their own health and undermining their ability to understand the different aspects of their healthcare.

No, never, it [information] doesn’t exist, that doesn’t exist. In fact, whenever they passed it to me [written information], I was like, ‘thank you, but I won’t be able to read it.’ I took it of course, but no, the information system, the system of brochures with reasonable accommodation for people, at least, with visual impairment is not prepared. It doesn’t exist. Communication is difficult, in the hospital I did not understand the words, there is no interpreter. The first time I didn’t understand anything, many words I didn’t know, and nobody answered me, nobody talked to me. (Woman with visual disability, 56 years old, no children)

Women with visual disabilities reported that reasonable accommodation regarding the information provided during sexual and reproductive healthcare services was inexistent. Health professionals often reproduced acts of violence by making women with disabilities invisible within the health consultation, even when the situation of disability was evident, as it occurred with this participant:

They called me, I arrived, I stood up from where I was sitting, I went to the door and entered. I noticed that he was looking down because of how he spoke, and I noticed more because I bumped my cane with his desk and there he raised his head. On top of that, he didn’t even tell me to sit down because he attended me standing up. (Woman with visual disability, 57 years old, no children)

Informed consent is an indispensable tool that promotes self-determination and facilitates decision-making for women with disabilities in various health contexts. In sexual and reproductive healthcare services, the absence of this tool led to the restriction of legal capacity, suppressing independence in decision-making.

She commented on how informed consent was done, that she witnessed an informed consent given by a young woman [with intellectual disability]. At the health service, the professionals told her ‘look, don’t worry, we’re going to tie your tubes [Fallopian tubes]’. And she says ‘no please, don’t do that to me’. We’re going to sew your tubes that was, and she ‘no, I don’t want to’. And they all [said], how, doesn’t she want to? Because you know what she understood? That they were going to sew up her mouth, that’s informed consent! (Woman with physical disability, 54 years old, two children)

In the next story, family members and health professionals deprived women with disabilities of information about contraception, taking away their right to make decisions about their own bodies.

In Calama city, and through alternatives reports [to CRPD], we pointed out how relatives drove their daughters [with hearing disability] to clinics and without a sign language interpreter. They told the girl to ‘put your arm’ and introduced a pellet for contraception. But the girl didn’t know what the doctor said to the mother, or what the mother said to the doctor. It was impossible for her to intervene and without a sign language interpreter, she could not give or deny her consent. These practices have a lot to do with families asking for it, why are they [doctors] going to deny them? (Woman with psychosocial disability, 56 years old, no children)

Furthermore, health professionals often make the opinions and will of women with disabilities invisible in gynaecological-obstetric care scenarios, exposing women to embarrassing situations and exhibiting their privacy in front of others without consent.

I was embarrassed because the doctor who treated me arrived with young people who were doing their medical internship. I was with my legs open and the doctor came in. He was explaining what I had, while laughing, and I wanted to look the other way. There were at least four men and one women. (Woman with a physical disability, 69 years old, two children)

Objectification of Girls’ and Women’s Bodies Through Practices, Such as Forced Sterilisation

Gynaecological and obstetric violence experienced by women with disabilities in Chile reveals the objectification of their bodies through procedures, such as forced sterilisation. This act of torture, committed by health professionals, is conceived from a logic of valid healthcare provision, which is applied to bodies that are hierarchically located at a lower social level. On this topic, one of the participants explained that:

They have never been taken into account, that is, on the contrary, they have been objectified, because who makes the decision of forced sterilisation is not the woman with disabilities, it is not the adolescent, because beware, that is done to adolescents in particular. It is the families, it is the medical teams, those famous ethical committees are the ones who make the decision as high priest regarding the body and the future life of a person that they simply decide whether or not she can exercise a right that for everyone is natural. (Woman with visual disability, 43 years old, no children).

Among these experiences, the normalisation of the diagnostic falsification of ovarian cysts to sterilise girls, which is considered ‘necessary for their own good’, appears recurrently. The infantilisation and conception of women and girls with disabilities as non-sexual beings support the naturalisation of these actions, as expressed in this story:

Mothers say that doctors tell them ‘this girl is going to go into puberty, when do we operate on her?’ And they went with adulterated certificates that said ‘ovarian cyst’ to the operating room, and that’s all. And many of those mothers never knew what sterilising a child meant, they never questioned it. (Woman with psychosocial disability, 56 years old, no children)

The abuse of medical power is part of these experiences and is manifested through the use of diagnostic adulteration. Through this frequent practice, procedures are oversimplified when explained to the families, in order to get their approval. In this example, a mother felt violated by the proposal of the medical professional, who talked about her daughter who was only one month old at the time.

For me it was an impact, the truth was that it was difficult for me to understand what the health professional was telling me. I could not fit in my head what he was saying, because I had a one-month-old daughter [baby with Down syndrome], and he was telling me that at 11 years old, I should already have to think about sterilisation. And he told me that, although he was very clear that it was not allowed, there were ways to do it so that no one was harmed. And he told me ‘so that no one would be harmed’ and I thought that the only one harmed is my daughter. He told me that it was done with a diagnosis of cyst to an ovary, that it was very simple and that when the time came, we talked, that is, as ‘zero problem’, so that I would stay calm in that aspect. (Woman with physical disability, 54 years old, two children)

These experiences of gynaecological and obstetric violence are often linked to the acceptance of sterilisation by families or caregivers, who may not be aware of the subsequent consequences that this surgical procedure will have on their daughters’ bodies.

The mother was afraid that maybe they had done something else, something else. What she was telling me is, ‘I don’t know how to do a sterilisation, I have no idea what they did to her [referring to her daughter]. I only saw that they entered her into an operating room and told me she was ready. And I saw the diagnosis that said, “cyst on the left ovary”’. (Woman with visual disability, 43 years old, no children)

There are several factors that begin to mix, and it is not only sterilisation, but what kind of sterilisation they do, because they do not inform the family either, they do not tell them, for example, we only tie the tubes, or we remove the uterus, or we remove the ovaries. They don’t know what they did to them. (Woman with physical disability, 54 years old, two children)

In other example, sterilisation occurred when family members could not deal with their daughters’ sexuality and contraception methods and viewed the surgical procedure as the only solution to the conflict experienced.

I know a 21-year-old girl who was sterilised at 15. The mother gave her contraceptives, and she didn’t want to take any more. Then, at age 15, the doctor told the mother to sterilise her, and she, against her entire family, sterilised her daughter. And how do they convince the tutor? It’s because the tutor is so tired with one; it can be the dad, the mom, the husband, whoever it is that says, ‘yes, do it’. (Woman with psychosocial disability, 39 years old, three children)

On the other hand, there are experiences of gynaecological and obstetric violence where sterilisations have been performed with questionable consent, as is the case of reports of hypermedicalised women who are forced to consent to an irreversible surgical procedure, despite not having at that moment clear awareness of their actions, nor the adequate mental faculties to understand the magnitude of the event. This is what this participant revealed:

When I was sterilised, I also signed, my tutor signed and I was also made to sign, as ‘almost consent’, but fairytale consent, because nobody explains anything to you. And I remember the doctor telling me ‘You’re not going to have any more rape children’, almost like a joke. And one was so doped in any case that I didn’t quite understand. (Woman with psychosocial disability, 39 years old, three children)

The experiences of objectification of these women and girls are evidenced through the naturalisation of coercive practices, torture, and inhuman treatment. The eugenic vision is imposed and marks the life trajectory of many of these women and girls.

Intimidation and Discrimination Linked to Motherhood

Many experiences of gynaecological and obstetric violence are characterised by the lack of recognition and underestimation of the parental skills of women with disabilities, based on the ableist view that people with disabilities are inferior or less capable of being a father or a mother than people without disabilities. This view can lead to a series of actions taken by professionals aimed at limiting, restricting, or substituting the care of children, under the unfounded and unjustified belief that women with disabilities cannot exercise the role of mother and provide the necessary care, considering disability as a risk for the development of children. This undoubtedly translates into discriminatory practices and violates the rights of women with disabilities.

For example, blind mothers, I had to see a case, and we go back to poor people. They took away their baby, she had low vision, and he was blind. And they had their baby in a hospital in the fifth region [Valparaiso Region]. And when she gave birth, they tell her ‘we are very sorry, but the baby stays’. She didn’t understand why her baby was staying and the baby was taken away because they felt they [mother and father] weren’t capable. And they had to fight it in court to get the baby back, because the doctors considered that she was not fit to take care of the baby and that the baby was at risk. (Woman with visual disability, 43 years old, no children)

Resistance and threats from the part of various professionals towards women with disabilities, concerning their suitability to care for their children, suggest a eugenic view that implies selecting or limiting parenting based on criteria of specific abilities. This leads to the collection of false testimonies that result in the activation of maternity substitution protocols. These practices operate from the view of dehumanising, immovable judgements of ‘absolute veracity’ and result in actions of imputation of false crimes, without evidence, and subjective evaluations, based on the eugenic view of disability. This is how this participant pointed it out:

At Cesfam [health center] the midwife told me, she never asked me about my daughter’s vaginal flow. He never asked me, he asked my daughter, and she said I was sexually abusing my daughter, and that’s why I was traumatised. I had to go to trial and family court. That’s why I prefer to go with my mom... That the midwife was wrong, that she had not understood that I am deaf and because I was covered she did not see or tell the truth, but she never asked me and did not tell me anything, I did not know, nor did she ever ask me. On January 4, 2018 everything was ready on my behalf and they apologised to me. I told him that ‘nobody ever asked me anything!’ (Woman with hearing disability, 37 years old, one child)

The disregard for the parental capacities of women with disabilities shows an attitude of undervaluation and questioning towards them, which translates into practices of gynaecological and obstetric, psychological, emotional and even physical violence, which seek to ‘correct’ or ‘punish’ the decision to become a mother. This stems from a eugenic vision of disability that promotes the idea that people with disabilities are inferior and that their reproduction should be controlled or avoided, since it is assumed that a person with disabilities should not have children. These attitudes reinforce discrimination and exclusion of women with disabilities, denying them their right to make reproductive decisions.

The first thing the doctor told me when I went to my first echo, she told me I was irresponsible, how did I think of being pregnant. And I also told her that it was not planned, she asked me for a medical evaluation support on maternity and I had nothing ... Another time I went to draw blood, a nurse took my arm hard, threw it very hard. I told him to be careful with my baby! because he hit my pregnant belly, I was 7 months of pregnancy, and he asks me, but how will she be pregnant if you cannot hold your hand, how are you going to take care of your baby? (Woman with a physical disability, 28 years old, one child)

Faced with the possibility of discriminatory situations and a denial of their rights, women with disabilities seek strategies to prevent or reduce possible questions that can increase the risk for them of losing the care of their children. In this sense, showing that they have support from other people regarding child care contributes to reducing the possibility of losing their children.

At that time people were not like now, I felt that they judged me because I am blind, now the doctors look differently at disability, by the TeletónFootnote 1 and all that. So, when I went to my check-ups, I always had to be accompanied because otherwise, they asked me many things. I knew what that interrogation was for, why they wanted to take my son from me. I had heard those things, but not me; they were not going to take away my baby. (Woman with visual disability, 40 years old, one child)

In many of these cases, health professionals who engage in such violent practices are not held accountable, and their discriminatory and/or abusive behaviour occurs with absolute impunity and without any legal or administrative consequences. This may result in women with disabilities underreporting such cases, due to their fear or lack of alternative healthcare options, failure to investigate or act by competent authorities, or the lack of laws and regulations that adequately protect the rights of women with disabilities.

It also demonstrates how families and caregivers may play a facilitating or a hindering role with regard to the access of their daughters with disabilities to sexual and reproductive health services. There are families and caregivers who support and protect their daughters from such violence, but also others who do not provide them with accurate information, do not give credibility to their experiences, decide for them and/or accept abusive medical procedures.

Discussion

This study is aimed at identifying and analysing the experiences of gynaecological and obstetric violence faced by women with disabilities in Chile. The study’s participants reported experiences related to health inequity in communication, such as lack of information for informed decision-making and violation of privacy. Secondly, the results indicate objectification of girls and women’s bodies through forced sterilisation, practices of abuse of medical power, and procedures carried out without women’s consent. Such practices are characterised by the normalisation of the diagnostic falsification and the acceptance by families or caregivers. In third place, the study evidenced intimidation and discrimination related to maternity, with health professionals undervaluing the parental capabilities of these women.

These findings demonstrate that women with disabilities have worse access to healthcare services, in line with previous research (Matin et al., 2021; Sakellariou & Rotarou, 2017a, 2019). Previous research has also shown how the type of healthcare insurance has a direct effect on access to healthcare in the Chilean context: people with disabilities with private health insurance are more likely to have better access to healthcare than people with disabilities that are affiliated to the public insurance (Rotarou & Sakellariou, 2017).

Concerning sexual and reproductive health, gaps are also evident in ensuring the sexual and reproductive rights of women with disabilities (Agaronnik et al., 2020; Lagu et al., 2022). In our study, health professionals play a relevant role in perpetuating the healthcare disparities and violence women with disabilities experience. Likewise, the results confirm a frame of structural violence that is reproduced through the deprivation of basic human needs, such as dignified healthcare (Yupanqui-Concha et al., 2022), and indicate poor working practices on the part of healthcare professionals (Rice et al., 2021). Family members and caregivers can also act as facilitators or barriers to their daughters’ access to sexual and reproductive health services. This is consistent with previous research that found that families and caregivers often lacked information on sexual and reproductive health, including how to support their relatives’ sexuality (Powell et al., 2020).

The literature on gynaecological and obstetric violence is minimal, with most existing research focusing only on obstetric violence. The very few existing studies explore only the obstetric dimension of violence in women with disabilities (Rice et al., 2021; de Valverde Terra & Harmatiuk Matos, 2019; Wudneh et al., 2022). These studies coincide with our findings in identifying cases of physical violence, verbal abuse, stigma and discrimination, neglect and abandonment, and violations of the privacy of women with disabilities in obstetric care settings.

On the other hand, research on gynaecological and obstetric violence experienced by women with disabilities has been absent. From an epistemological point of view, it could be argued that the concept of gynaecological and obstetric violence does not include women with disabilities. In line with Arguedas (2016), the denial of experiences and grievances of these women constitutes a denial of their status as women, which implies, in turn, a denial of their access to justice. This element is transcendental because gynaecological and obstetric violence can encompass their entire lifecycle (International Planned Parenthood Federation European Network, 2022) and not just limit itself to the reproductive cycle. This reveals another finding: this type of violence reflects the experiences of women of different age groups, types of disabilities, and with different levels of education.

Policy Implications

Gynaecological and obstetric violence is detrimental to the health and well-being of all women, not only women with disabilities. However, in the latter case, it can be particularly harmful, as women with disabilities often experience structural disadvantage and discrimination that may multiply the effects of any incidents of gynaecological and obstetric violence. Such violence and/or traumatic healthcare-related experiences can lead to the avoidance or delay of needed health exams and treatments, a fact that may result in negative health outcomes for women with disabilities. They also endanger efforts to reduce health inequities and promote social cohesion and may have a negative impact on society as a whole, through reduction in productivity and increase in healthcare costs, due to late diagnosis.

An important step to eliminate this form of gender-based violence is to legally criminalise such actions (United Nations General Assembly, 2019). Table 2 provides a summary of general policy recommendations, as well as specific recommendations in the case of women with disabilities, with the aim of eliminating gynaecological and obstetric violence. Policy recommendations that should be considered include the following:

  • Introduce criminal laws that prohibit and penalise gynaecological and obstetric violence. Where such laws have been introduced but only for obstetric violence, extend the application of the law to include gynaecological violence as well so that women can be legally protected during gynaecological and obstetric health services throughout their entire lifecycle.

  • Adopt policies that fully respect women’s choices when accessing gynaecological and obstetric healthcare, by ensuring that services are transparent and comprehensive, where patients are always asked for informed consent regarding any procedure performed on them. Provide reasonable accommodation, such as ensuring that appropriate arrangements are made for communicating effectively with patients who have visual, hearing, intellectual or developmental disabilities.

  • Ensure universal design of healthcare services and equipment. Such design can make services and equipment usable, accessible, and inclusive for all women, while taking into account the particular needs of women with disabilities, in order to avoid uncomfortable, painful or unnecessarily intrusive procedures that can give rise to cases of gynaecological and obstetric violence.

  • Introduce independent mechanisms for denouncing practices of gynaecological and obstetric violence. National observatories and organisations for people with disabilities (OPDs) could provide initial guidance on the steps that need to be undertaken in such cases.

  • Introduce emotional support mechanisms, where women who have experienced gynaecological and obstetric violence can get the support they need. Dedicated teams in national observatories and OPDs could provide emotional and psychological support, including referring women to relevant institutions for appropriate legal action.

  • Collect data on prevalence of gynaecological and obstetric violence. Such data could be collected by national observatories and disaggregated by various socioeconomic, demographic, and health variables—including disability—that could in turn inform public policies.

  • Train health professionals into adopting a gender-sensitive, non-discriminatory, and patient-centred approach that is guided by the principle of respect towards women’s right to make decisions regarding their own bodies. Include disability training for all health professionals.

  • Introduce and promote programmes on sex education and sexual health education, in order to provide scientific information and eliminate inaccurate, dangerous or unnecessary practices. Such programmes should focus not only on people with disabilities but also on their families and carers, since they are the ones who often take decisions related to sexual and reproductive health on behalf of people with disabilities.

  • Establish constructive cooperation between medical institutions, healthcare professionals, and civil society organisations with regard to addressing gynaecological and obstetric violence. Involve OPDs in relevant discussions and actions.

Table 2 General and specific policy recommendations
Full size table

One of the limitations of this study is that the women in our sample were either activists and/or representatives of national organisations of persons with disabilities and who had a disability themselves. While this selection may have led to a more homogenous sample that may not be representative of this population subgroup (a fact, which could not be claimed in any case, due to the study’s sampling method), the women do differ among themselves in terms of occupation, education, type of disability, and whether they are mothers or not.

Another limitation was that the experiences of women with disabilities during or after the COVID-19 pandemic were not included. Despite both limitations, the strength of this study lies with the fact that—to the best of the authors’ knowledge—this is the first research into the experience of gynaecological and obstetric violence faced by women with disabilities both at a national and international level. Future research hopes to overcome these limitations by incorporating a more diverse and larger group of women with disabilities that have been affected by these practices; it would also be interesting to see the effect that the COVID-19 pandemic has had on the access to sexual and reproductive health services for women with disabilities. Such research could also expand and include the experiences of women with disabilities with gynaecological and obstetric violence in various Latino-American countries.

Conclusions

Gynaecological and obstetric violence experienced by women with disabilities is a present form of gender-based violence in Chile. The appropriation of women’s bodies, feelings, and decisions characterises all experiences analysed in this study. The denial of health services, discrimination, lack of informed consent, and lack of reasonable adjustments occur systematically and persistently, accounting for particularly complex scenarios experienced by women with disabilities regarding their access to sexual and reproductive healthcare. Insufficient or non-existent disability-related training and capacity building often translates into discriminatory and violent treatment by health professionals towards women with disabilities, a fact that positions them in a clear situation of disadvantage and abandonment, compared to women without disabilities. The criminalisation of this form of gender-based violence, together with the elaboration and introduction of disability-inclusive policies in healthcare, is key for the elimination of practices of gynaecological and obstetric violence, the generation of humanised approaches to health, the promotion of the health and well-being, and the protection of the rights of women with disabilities.