Image 1 . Because of her hearing disability, Jacinta was categorised as ARO— Alto Riesgo Obstétrico (high obstetric risk)—by the doctors in the biomedical healthcare system. Assigning this category will allow doctors treating Jacinta to carry out an elective caesarean section.

Image 2 . Jacinta is most comfortable lip-reading when people talk to her. She needs to look directly at the face of the person speaking. Carmen Susana (the midwife) checks on Jacinta’s blood pressure at Jacinta’s home in the company of Jorge (Jacinta’s partner). During the whole process, Carmen Susana would always interact with Jacinta face-to-face.

Image 3 . With the advance of technology, many of the devices that are used to monitor pregnant women’s labour are portable and can be used outside of hospitals. Carmen Susana uses a Doppler ultrasound to monitor the baby’s heartbeat. The small device amplifies the baby’s heartbeat through a small speaker so everyone around can hear it. In Jacinta’s case she could not hear the heartbeat, but it still gave her some kind of reassurance to know that the baby’s wellbeing was being monitored.

Image 4 . During labour, Jacinta was able to move around her home, a space familiar to her.

Image 5. Jacinta feeling her body. The awareness about the rhythms of her own body was made possible because she was able to not use her hearing device.

Image 6 . Jorge holds Jacinta’s hand while she learns to feel and accept the stronger and more frequent contractions.

Image 7 . It was a little past noon; Jacinta’s contractions were getting more and more frequent. Carmen Susana made sure that all the tools and devices for the delivery were in order and ready to be used.

Image 8 . During the third phase of labour, Jorge gave Jacinta emotional and physical support.

Image 9 . The final push during delivery was intense. Jacinta set the pace. She decided to give birth in her bedroom.

Image 10 . Amanda Violeta was born after almost 12 hours of labour at home, at her own pace, and surrounded by loved ones.

Image 11 . Jacinta’s room, the place where Jacinta and Jorge started their family.

Jacinta is deaf from birth. She chose to give birth to her baby at her home without her hearing aids. Fu-Yu assisted the process and recorded it with photographs. We share our experience as a Photo Essay, reflecting on how the ‘visual’ became our shared sensory perception at the time. We use black and white photographs to invite the viewer to appreciate the particular combination of senses at play: we do not rely on colour here, just as we did not rely on the auditory to record this experience. Besides acknowledging the intersubjectivities that surfaced, we see importance in recognising that ‘images are representations of the world filtered by the positionalities of the makers themselves, influenced by unique experiences that brought them to that point in time … Images become an extension of a way of thinking, visually connecting maker with participant along lines of thought’ (Cartwright and Crowder 2017, 515). Whilst Jacinta was in labour, Fu-Yu was assisting midwife Carmen Susana while also recording the event with a camera hanging around her neck. Because Jacinta chose not to use her hearing aids, lip reading and visual information became vital elements in her birthing process. Deciding beforehand to have a visual record of the birthing process helped sharpen our senses and conform a shared awareness of our surroundings and the event. Through the photographic record, our aim is to offer a compelling illustration of and an invitation to think and ‘visualise’ care and childbirth from a disability-studies perspective.

Generally, deaf people in Ecuador do not identify as people with disabilities. Instead, they consider their group as a ‘culture’ because they have their own language. Jacinta finds herself in a space between the ‘hearing culture’ and the ‘deaf culture’. Even though she is deaf by birth, she never learned sign language. At this point, we would like to be clear that we are not claiming to be the voice of people with disabilities or Ecuador’s ‘deaf culture’. We humbly believe that thinking alongside disability-studies when reflecting on Jacinta’s experience as a non-hearing person shines light on the issues of accessibility to the biomedical health infrastructure for pregnant women.

Jacinta’s testimony

Di a luz en mi casa el 14 de febrero del 2022 a mi primera hija. Al ser una persona sorda que necesita de la labio-lectura para comunicarse, en el contexto sanitario por covid, se me hacía imposible pensar en mi parto en una clínica donde todos usarían mascarillas y probablemente estaría desorientada y sin entender nada. Esta situación fue determinante para tomar la decisión de parir en casa.

Yo pedí no usar mi aparato auditivo durante el proceso del parto porque sabía que al oír me iba a distraer con cualquier ruidito (mi aparato no discrimina sonidos, entonces oigo TODO al mismo tiempo), así que cualquier cosa que debían decirme era mirándome de frente para poder leer sus labios. De esa manera, pude enfocarme en mi parto y disfrutar de mi silencio y sobrellevarlo.

En esta jornada también logré comprender lo que significa tener un guardián del parto. Jorge, mi pareja, estuvo presente, conteniendo, moviendo todo lo necesario para que yo pudiera estar cómoda. Me daba masajes, palabras de aliento, abrazos y estaba pendiente de todo. Al final, en la fase expulsiva, estuvo hablándome (aunque yo no lo pudiera oír, sentía su presencia y su vibración) y eso fue determinante.

Sin embargo, aún existen varios obstáculos para acceder a un servicio digno de atención prenatal, parto y posparto. Las experiencias en el sistema de salud pública y privada fueron decepcionantes y violentas. A más de enfrentarme a una infantilización por mi condición auditiva, no permitían que mi pareja entrara conmigo a las consultas y no fui debidamente informada sobre el desarrollo de mi embarazo. Quisieron que me sometiera a una intervención innecesaria, una cesárea antes de tiempo, por un supuesto riesgo de preeclampsia y recomendaron soporte de termo-cuna para mi bebé. Esta situación hubiera implicado un alto costo emocional y económico. Fue la intuición y la preparación previa en un círculo para un parto humanizado que me llevó a desconfiar de esa recomendación.

I gave birth to my firstborn on 14 February 2022. Being a deaf person who needs to lip-read to communicate, it was impossible for me to give birth in a clinic during covid, where everyone would be using masks and I would have been disoriented without being able to understand others. This determined my choice of giving birth at home.

I asked not to use my hearing aid during labour because I knew that hearing would distract me (my device doesn’t discriminate sounds, so I hear EVERYTHING at the same time). I needed people to look at me when they talk to me so I could read their lips. This way, I could focus on my labour, endure it, and enjoy my silence.

In this journey too I was able to understand what it means to have a guardian during labour. Jorge, my partner, was present, holding and moving everything needed to make me feel comfortable. He gave me massages, offered me words of encouragement, and embraced me. At the end, during delivery he talked to me. Even though I couldn’t hear him, I could feel the vibrations and that was crucial.

There are still many obstacles to access dignified perinatal care. The experiences in the public and private biomedical systems were disappointing and violent. I went through infantilisation due to my hearing condition and my partner wasn’t allowed to accompany me to the doctor appointments. I wasn’t fully informed of my pregnancy conditions. They wanted to carry out an unnecessary intervention, a premature caesarean-section for a presupposed preeclampsia. My baby would have needed a neonatal incubator. This situation would have meant high emotional and economic costs for me. It was my intuition and the preparation I had during a humanised childbirth group that led me to distrust this biomedical recommendation. ¹

Anyone who has witnessed a birthing process can testify that it is an event that requires people to be present in particular ways. It can overwhelm all of one’s senses with anxiety and determination, pain, and joy. Biomedicine and its practices around pregnancy and childbirth, particularly as provided within a neoliberal non-inclusive healthcare system, is often at odds with the individual needs of birthing women (Hoke et al. 2022). But as the abled society has internalised the idea that childbirth in the hospital is the ‘gold standard’, as a deaf woman, Jacinta experienced obstetric violence first hand.

According to Ecuador’s 2022 national census, caesarean sections were performed in 36.9% of childbirths in public hospitals and up to 87,7% in private hospitals (Troya 2022). The discourse behind these numbers is powerful. A common perception is that caesarean sections are the ‘safe’ choice because they provide a ‘controlled’ procedure without any ‘surprises’. By contrast, vaginal childbirth is seen as unpredictable, full of unexpected events, and involving individualised decisions that need to be made along the way. For Jacinta, biomedical control was not the defining framework. She viewed childbirth as a threshold between life and death and a process of physical and spiritual transformation.

Jacinta was able to find her partera ² , Carmen Susana Savichay, outside of the biomedical establishment, to escape from discrimination and obstetric violence. She only needed that first respectful, attentive, loving, and warm meeting with partera Carmen Susana to understand that this was the treatment she deserved. As Audre Lorde proclaimed, ‘caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare’ (Lorde 1988, cited in Rosenbaum and Talmor 2022, 1). Even though self-care is both a solution to and a symptom of the social deficits of late capitalism (Hobart and Kneese 2020), our experience with this home-based childbirth is evidence that there are alternative , better-suited possibilities. The kind of self-care Jacinta models is in a mode of selfhood that is insistently relational, with a strong sense of self-agency, but also one that is dependent on a caring community. With this, we attest that this kind of support becomes a revolutionary act in the face of the individualist and capitalist society.

The dynamics of care and self-care were strengthened by the social ties surrounding this labour and respectful childbirth. Carmen Susana manages a perinatal centre in Cuenca called Casa Madre Luna . In her own words:

this center was created as a space to accompany women and rediscover who we are, what we are made of; to remember that for millennia we’ve known how to give birth, we’ve known how to nurse, we’ve known how to raise our children and overcome fear. Current systems try to make us believe that we can’t and we don’t know […] It is a space to remember that childbirth is part of a sacred ceremony, a vital moment in the history of all human beings and we need to give it back its place. ³

With the support of Carmen Susana, Jacinta had a wonderful childbirth away from the noise of the violent neoliberal healthcare practices that flood current biomedical institutions. Jacinta gave birth to beautiful Amanda Violeta at home. In silence.

Authorship statement

Jacinta Aguirre and Fu-Yu Chang co-authored the essay in its full extent. Fu-Yu Chang took the photographs. The choice of the photos presented, the written text, and the theoretical analysis was a work of joint authorship through a continual exchange of ideas and feedback during the process.

Ethics statement

When the idea of sharing the experience surfaced, Jacinta gave her consent to share the personal and intimate photos presented here, as she too, thought it important to tell the story of disability and childbirth outside of the biomedical sphere. Carmen Susana agreed to the use of her real name and the name of her perinatal centre.

Acknowledgements

We want to thank our families, Jorge Enrique, and Amanda Violeta who are essential to this story. This work could not have been possible without the mentoring of our academic and artistic teachers. A special thanks to María Fernanda García for her gentle and beautiful guidance.

About the authors

Fu-Yu Chang is a family physician and a PhD student in Anthropology at the University of Massachusetts Amherst with an interest in healthcare worker’s wellbeing and biomedical pedagogy.

Jacinta Aguirre is an anthropologist who has written about disabilities and bodies. She is currently conducting research with recicladoras de base (women who recycle street waste material) in Ecuador.

References

Cartwright, Elizabeth, and Jerome W. Crowder. 2017. ‘Dissecting Images: Multimodal Medical Anthropology’. Medical Anthropology 36 (6): 515–18. https://doi.org/10.1080/01459740.2017.1334058 .

Hobart, Hi’ilei Julia Kawehipuaakahaopulani, and Tamara Kneese. 2020. ‘Radical Care: Survival Strategies for Uncertain Times’. Social Text 38 (1): 1–16. https://doi.org/10.1215/01642472-7971067 .

Hoke, Morgan K., Samya R. Stumo, and Thomas L. Leatherman. 2022. ‘Global Health Goals and Local Constraints in a Rural Peruvian Clinic’. In The Work of Hospitals: Global Medicine in Local Cultures , edited by William C. Olsen and Carolyn Sargent, 17–33. New Brunswick, NJ: Rutgers University Press.

Rosenbaum, Susanna, and Ruti Talmor. 2022. ‘Self-Care’. Feminist Anthropology 3 (2): 362–72. https://doi.org/10.1002/fea2.12088 .

Troya, Paola. 2022. Registro Estadístico de Nacidos Vivos, 2022 (01-2023-RENV). Instituto Nacional de Estadística y Censos. https://www.datosabiertos.gob.ec/dataset/registro-estadistico-de-nacido-vivo-2022 .

1. Translation by the authors. ↩︎

2. Parteras (traditional midwives) are dedicated to the preservation of ancestral knowledge and practices around pregnancy, labour, childbirth and postpartum. ↩︎

3. All translations by the authors. From the original in Spanish: ‘Este centro fue creado como un espacio para acompañar a las mujeres y redescubrir quiénes somos, de qué estamos hechas; para recordarnos que por milenios hemos sabido parir, hemos sabido amamantar, hemos sabido criar a nuestros hijos y vencer el miedo porque actualmente el sistema intenta hacernos creer que no podemos, que no sabemos [...] Es un espacio para recordar que el parto y el nacimiento son parte de una ceremonia sagrada, un momento vital en la historia de todos los seres humanos y necesitamos devolverle su lugar’. ↩︎

Translation by the authors. ↩︎

Parteras (traditional midwives) are dedicated to the preservation of ancestral knowledge and practices around pregnancy, labour, childbirth and postpartum. ↩︎

All translations by the authors. From the original in Spanish: ‘Este centro fue creado como un espacio para acompañar a las mujeres y redescubrir quiénes somos, de qué estamos hechas; para recordarnos que por milenios hemos sabido parir, hemos sabido amamantar, hemos sabido criar a nuestros hijos y vencer el miedo porque actualmente el sistema intenta hacernos creer que no podemos, que no sabemos [...] Es un espacio para recordar que el parto y el nacimiento son parte de una ceremonia sagrada, un momento vital en la historia de todos los seres humanos y necesitamos devolverle su lugar’. ↩︎