This is the ninth blogpost of the AI Research and COVID: Journeys to Gender Equality and Inclusion series. This blog series emerged from the “writeshop” organized by Gender at Work as part of the Data Science and Artificial Intelligence Research Program to Combat COVID-19, also known as AI4COVID, financed by the International Development Research Centre (IDRC) and Swedish International Development Cooperation Agency (SIDA). The initiative was part of the final Gender Action Learning workshop held in Nairobi, Kenya in February 2023.
In this blog post, Hélène Agnès Diéne shares her experiences during the pandemic, working in a COVID-19 clinic and later falling ill herself. She reflects on her fears and uncertainties, and how these experiences led her to understand the importance of considering gender differences in coping with illness. Learning about gender and intersectionality through her research role enabled her to realize she would use such a lens in her doctoral research on disaggregated impacts of COVID-19 to be more contextually relevant.
Find this blog in its original language – French – here.
My experiences of the pandemic
In March 2020, I took part in the Training Course for Research Assistants in Social Sciences, followed by a practicum at the CRCF (Regional Research and Training Centre and Health Clinic of Fann) in Dakar, Senegal, specializing in ‘Coronaviruses and emerging epidemics.’ Following this, in June 2020, I was recruited as a research assistant in an outpatient clinic. As part of my work, I was part of the team that supported the social worker in the psychosocial care of patients who tested positive for COVID-19 and were quarantined in an Outpatient Treatment Centre (OTC) in Dakar during the first wave. Our role was to reach out to patients, to talk to them, reassure them, answer some of their questions, identify their needs, and meet them if possible.
At the time, everyone was afraid of the disease, including me. Fear of this new virus that was wreaking havoc all over the world. Every day, on TV, radio and social media, there was nothing but talk of the number of positive cases and the number of deaths. And this situation only made me more afraid every day. On top of all that, I had to comply with the strict public health measures (always wearing masks, washing hands, keeping a safe distance, etc.) and the more restrictive measures (curfews, bans on gatherings and inter-regional travel, etc.) decreed by the government. Faced with this situation, I had to work in an OTC.
It was a period full of uncertainty because you could be infected at any time and infect those close to you, given the level of virulence of this virus that was appearing everywhere. On the one hand, I was excited and very proud at the idea of making my contribution to this response, but on the other, I was scared, especially when I thought of the members of my family whom I would be exposing to a possible risk of contamination without meaning to.
I had so many questions.
Deep down, I wondered how I was going to go to a treatment centre in the morning and come back home in the evening without contaminating myself or a member of my family. All the while knowing that at the time I was living with two people who were vulnerable because of their comorbidities: my mother, who is elderly and has high blood pressure, and one of my older sisters, who has asthma. Although I interacted with the patients by telephone, my presence in the centre didn’t totally reassure me. However, the working atmosphere that prevailed in this OTC with the various members of staff (nursing staff, hygienists, Red Cross workers, etc.), comforted me a lot and helped me to overcome the fear that I felt in the depths of my being.
During all this uncertainty, I left for the centre in the morning with my partner on the days when we had to be there to work, and I returned home in the evenings. However, I was always careful to take the necessary steps to avoid encountering people. The members of my family sometimes reminded me of this in a teasing tone when I sometimes neglected them! So, when I got home, I took my time to disinfect myself before touching anything. As time went by, I began to feel less afraid, until the day I started to feel symptoms just a month later.
I wondered if I would test positive for COVID-19?
When a disease becomes a reality
On Friday 7 August 2020, the day I was due to receive the results of my test, I woke up feeling so optimistic. That day, deep down, I told myself that the results would certainly come back negative, especially as I was already starting to feel much better thanks to the medication I was taking. As usual, I took my shower, had breakfast, and stayed in my room to connect on social networks, just to relax a bit before the announcement of my results.
Around 2 pm, my lunch was brought to me. No sooner had I swallowed a mouthful than my phone rang. I picked it up straight away. At the other end of the line, I heard the doctor’s voice. He said: “Hello Hélène, I’m sorry but your results came back positive.” He added: “Have you followed the public health measures at home and taken the medication I prescribed?” He reassured me: “Don’t worry, someone else will call you to tell you about the quarantine procedures.” I had already distanced myself from the rest of the family on the doctor’s instructions when my first symptoms appeared.
I have to admit that when we spoke on the phone, I wasn’t afraid and I told myself deep down that it was nothing at all. But when I hung up, I was silent for a while. At the time, I remembered all those moments spent with my family waiting for the results. And that’s what made me cry the most. Yes, I burst into tears! I had to cry. I had to let them out, if only to relieve myself and get rid of what was in my heart. I realized that I was a real ‘danger’ to my family: contaminating them and exposing them to the stigma of the neighbourhood. I felt guilty just thinking about it.
So many questions were running through my mind at the time. Now the problem was how to tell my family. After fifteen minutes of reflection in my room, I summoned up the courage to call my mum. She came to join me in my room, but kept her distance. She stopped in front of the door. When she saw my tears, she automatically understood. Her motherly instincts made her want to hug me to comfort me, but for fear of infecting her, I immediately asked her not to come any closer. Faced with this situation, she burst into tears as we both knew what to expect. I then asked her to withdraw so as not to expose her further and to inform my sisters of the situation. I then informed my superiors and colleagues, who gave me a lot of support and assistance during this difficult ordeal.
A few moments later, another gentleman called to explain the quarantine procedure and gave me until the next morning to think about it and confirm my choice. I had two options: either to stay at home and be monitored at home, or to be admitted to an OTC. At first, I didn’t want to leave the room because I didn’t want to put my family members at further risk. So I thought about staying at home to follow my treatment. That night was very long and very stressful for me and for my family, as my mum and my sisters always called me to see if I was well or not, if I needed anything. Through their calls, I felt their love, their sympathy, their desire to want to support me and help me at this difficult time, without being able to because of the ‘protective distance’ that separated us. I had become a stranger in my own home because all our communications were by telephone. I also sensed the fear that they were hiding at all costs so as not to stress me further. I realized that my mother and the others hadn’t been able to sleep a wink all night following this news. This unbearable situation and the advice of my superiors and the doctor motivated me to choose quarantine in an OTC for better care, especially since I was familiar with it. That’s how I came to be interned in the same OTC where I was working.
As part of my work at this OTC, I interacted a lot with male and female patients over the telephone. I saw what they were going through daily as they faced the challenge of the disease. They were confined within four walls, waiting for the day when they would finally have two consecutive negative tests so that they could leave this place for good and rejoin their families. But I never imagined that one day I too would be living with some of them as a patient.
Quarantine at the OTC
The day I arrived at the centre in an ambulance with a driver in PPE (personal protective equipment), a doctor in PPE welcomed me and took me to my room to settle me in with all the necessary protocols. That was when I finally accepted that I was ill. I was very well received by the women there, most of whom already knew me.
During my stay there, I was lucky enough to live with some wonderful women who were very enthusiastic despite their illness. In the OTCs, I saw women interned with their children who had tested positive. I saw women with babies who felt guilty because their children were far away. What I liked most about this place was the fact that we were all just women and we understood each other despite the differences in age, marital status, profession, status, level of education, religion, nationality, etc. We lived together in ‘Senegalese Teranga’ and we looked for solutions together for our well-being. On a voluntary basis, we ensured the cleanliness of the premises by cleaning the corridors, toilets and bedrooms. We did fitness exercises. We also took advantage of lunch and dinner times to talk and share our stories of COVID-19, in strict compliance with public health measures. These were powerful moments that allowed us to relax and get away from it all, to forget the stress of the illness for a while before returning to our respective rooms. It was all part of an incredible and extraordinary show of solidarity.
It was at that point that I began to see the difference between the way of living and adapting to the realities of the environment between men and women who were interned separately in this centre. But unfortunately at the time I wasn’t familiar with the concept of intersectionality. In my conception of things, I thought that gender was limited to women. I had experienced a lot of things that I wanted to express, but I limited myself to health in my analyses and to gender sometimes, but not in depth.
Under the lantern of intersectionality
In November 2020, I joined another research program entitled Use of AI in the fight against COVID-19 in Senegal and Mali: Adaptability to the local context and social acceptability for ethical and responsible AI as a PhD student and research assistant. At the start of this project, I limited myself to the socio-anthropology of health as part of my research, which happens to be my specialization for analyzing the social realities I come up against on a daily basis. I never thought of making a correlation between gender, intersectionality and health when analyzing the results I was handling as a young researcher. I had a very limited vision of the concept of gender.
Joining the gender team of the AI4COVID project led by Professor Tidiane Ndoye was one of the best experiences I’ve had in this project. For more than two years, we had internal working and peer-learning sessions with the members of the team and external sessions with the Gender at Work group. Over the two years we’ve been working on this project, I’ve learnt from the design of the tools―during our internal meetings to discuss gender, during the training of the students responsible for collecting the data, and during the collection and analysis of quantitative and qualitative data―to take gender and intersectional aspects into account. It’s vital to consider the particularities of the environment because we carried out our studies in the health districts of Dakar West, Kédougou, Touba, Ziguinchor, Richard-Toll and Mbour. And in each of the districts we visited, we met men and women who had experienced the pandemic differently.
Through what I’ve learnt with Gender at Work, I’m realizing day by day that the analysis of my results would be more relevant and exhaustive if I took these aspects into account. Our various online encounters have enabled me to gradually deconstruct the idea that gender was limited solely to women, and sometimes even that it was the preserve of feminists, just like many other people. And beyond gender, we have the concept of intersectionality, which helps us to be more precise in our work on gender. That’s when I started to understand what gender and intersectionality really meant and how gender interacts with other social identities to shape prejudice.
This concept reminds us that to understand social realities, we must look beyond the facts of being male or female. In fact, to break down the information in the analysis, we need to break the data down into detailed sub-categories, which gives us a better understanding of social realities. We need to take into account the specific characteristics of individuals according to their social category, age, level of education, marital status, financial status, sector of activity, religion, culture, ethnicity, country, etc. All these aspects may seem obvious to us at times, but if they are well documented, they prevent us from falling into the trap of remaining in a superficial analysis of our results.
Furthermore, as Mario Chàvez Claros writes in My Journey Through Gender Analysis and Marguerita Beneke de Sanfeliu in Why am I still getting the look? (both from a previous Gender at Work writing workshop), the important thing is that gender in research goes beyond personal learning. When focusing on gender in research, we also need to see what is important to do now, what comes next and how we can improve our work in the future.
As far as I’m concerned, I plan to focus on gender in my thesis, which is about data in COVID-19 management. More specifically, the experience of users, i.e. medical staff and patients, whether male or female. And I think doing an intersectional gender analysis of these experiences would be a very good idea to better understand this situation.
This blog post was written by Hélène Agnès Diéne, a young researcher and Doctoral student in socio-anthropology of health, at LASAP-UCAD, & is licensed under a CC BY 4.0 license. © 2023 Hélène Agnès Diéne. You can find Hélène on LinkedIn.
Curious to read more reflections on AI, gender inequality and exclusions? Read the other blog posts from this series here: Amelia Taylor’s Can AI have its cake and eat it too?, Michelle Mbuthia’s Cook, Clean, Plan: A case for more gender-responsive policymaking, Meghan Malaatjie’s Are women programmed to think less and do more?, Jim Todd’s Break out of your silo, Mahlet Hailemariam’s Why are you talking to a blank screen?, Sylvia Kiwuwa Muyingo’s A Biostatistician’s Personal Journey through Gender Bias, Ethan Gilsdorf’s No Differences, Only Sames: Finding Common Ground in Nairobi During the AI4COVID Gender Action Learning Writeshop, and Tidiane Ndoye’s Gender Marked Me: The Value of Gender Analysis in AI Research.