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Pandemic Portraits: Capturing experiences of people with disabilities in Bangladesh and Liberia during COVID-19

Shahreen Chowdhury, Liverpool School of Tropical Medicine

COVID-19 changed the world as we know it. However, the pandemic significantly affected people with disabilities with many facing additional barriers in access to services, increased isolation and increased risks of poor health and social outcomes.

This study took place in Bangladesh and Liberia, where there is minimal research on the needs and experiences of this population group. Furthermore, people with disabilities are often excluded from being actively involved in research. Therefore, this project worked with people with disabilities and caregivers in Bangladesh and Liberia as co-researchers. 

We used photovoice as a creative participatory method whereby our co-researchers used photography to capture their lived experiences through their lens, as the storytellers of their own narratives.

The findings present themes relating to inaccessibility, social connection, barriers to healthcare as well as nature, community and spaces of healing. Photovoice, through imagery and storytelling, has been a powerful tool in prioritising the voices of disabled people, adding to an evidence base to inform inclusive pandemic responses. 

Read the paper here

Read the photobook here

Watch the co-researcher’s commentary here

“Relying on Allah and without caring about COVID-19, I went to the Eid gathering for saying my Eid prayers with everyone. We all prayed to Allah so that we can save ourselves from COVID-19. This was a different experience for me.”
– Ashraful Alam, 32-year-old male, Dhaka, Bangladesh

Pandemic Portraits: Capturing experiences of people with disabilities in Bangladesh and Liberia during COVID-19
“Everything seems to be stalled in this pandemic like this closed tea stall. I have been studying in the same class for two years. When will I complete my Higher Secondary examination? When will I be able to take the responsibility of my family?”
– Bisshojit, 22-year-old male caregiver of his sister with learning disabilities, Bangladesh.
“My home district is Narail. I love to play cricket because it helps us to keep our body and mind well. I wanted to develop a cricket organisation for the disabled persons in Narial district but it did not happen due to the COVID-19 pandemic.”
– Delowar Hossain, 26-year-old, male, Khulna, Bangladesh
“It is our duty to keep the base of the tree clean and give it a chance to grow. Similarly, it is the responsibility for our society and family to support the disabled persons so that they can lead a better and healthier life.”
– Delowar Hossain, 26-year-old male, Khulna, Bangladesh
“During the lockdown period, I am bored and isolated from others. That’s why I try to cook some food for my family. I said to my mother I want to fry some eggs. Though my mother told me not to do this in case the hot oil falls on my legs. But I said, ‘what’s wrong with trying’. I fried the eggs and also boiled milk to pass my time and for refreshment.”
– Shomoy Chowdhury Shobuj, 31-year-old, male, Dhaka, Bangladesh
“A tulsi tree is planted in front of our household. We believe that tulsi plant has sacred power. The tulsi leaves also can reduce our illness like cold, cough and asthma related diseases with its healing power so my mother and sister try to worship it every day.”
– Bisshojit, 22-year-old male caregiver of sister with psychosocial disability, Bangladesh.
“During the lockdown, the wearing of masks makes it difficult for people who are deaf to get needed information or communicate freely. It is very difficult for a person with hearing impairment to be able to read someone’s lips or know what their expressions are when using masks.”
– Rose Dargbe, younger female, Liberia
“This is the intervention by Cultivation for User’s Hope  (CFUH) during the heart of COVID-19 giving hope to persons with mental health conditions in the West point community, Montserrado County”
– Benjamin Ballah, 40-year-old, male, Monrovia, Liberia
“Due to the lockdown, I was not able to take my son for treatment as early as possible. The road is blocked… there are strict restrictions on public movement. Since last year, we are facing this challenge. I cannot take him anywhere for treatment…”
– Bithi Akter, 30 year old female caregiver of son with cerebral palsy, Bangladesh
“The lockdown has made a very good use of technology since people were observing social distancing and working from home.”
– Rose Dargbe, younger female, Liberia

“We rely on wheelchairs. During the initial phase of COVID-19, we used to face negative comments from the general people about using wheelchairs. Some people thought that wheelchairs could increase the risk of spreading the infection. They advised me to stay out of their contact to stop the spread of the infection. When I heard this, I felt very sad and considered myself harmful to mankind. At that time, my coping strategy was to ignore and avoid mixing with people.”
– Halima Akter, 24 years old, female, Dhaka, Bangladesh
“Sometimes I am forced to become bed bound. I have been spending whole days in bed for the last three days due to severe pain in my legs. I do not even go to the doctor for the fear of coronavirus spreading from the hospital.”
– Ataur Islam, 40 year old Male, Narayanganj, Bangladesh
“My father had a mild stroke, and I took him to the hospital for his treatment. There was crowd around the ticket counter at the hospital and it was so tough for us to maintain social distance. Seeing the elbow crutch in my hand everyone thought that I was the patient. No one could have imagined that a disabled girl could take her sick father to hospital. And the interesting thing was the doctor thought that my father had a brain stroke because he was worried about me. At one point he asked me why I don’t get married. My father replied that not all disabled girls are burdens for their father. And if we support the disabled child like other children, they too will be successful in their life. They will also be able to take the responsibility of their parents.”
– Marjana Binte Forhad, Female, 22 years old, Faridpur, Bangladesh 
“In this pandemic, I and my family members have tried to eat various types of fruits because we all know that it helps to strengthen our immune system. That’s why, we are trying to eat native fruits with vitamin C. And I want to say everyone to eat more fruits and plant more trees in this pandemic.”
– Saddam Hossian, 25-year-old male, Manikganj, Bangladesh
“Due to my disability and COVID-19 lockdown, my life has been locked like the captive birds. Birds always try to break the cage and go towards nature but in reality the situation is in the opposite position.” Ataur Islam, 40 years old, male, Narayanganj, Bangladesh
“Due to the COVID-19 outbreak, we are not allowing our cleaner to come to our house. Munni (my sister-in-law) likes to do some household chores even though we tell her not to do anything. “
– Fatema Rahman Sumi, 32 years old, female caregiver for her sister-in-law who has a psychosocial disability
“One day during the lockdown, we had only a half cup of rice left in the bag for meal. Imagine a disabled person that could navigate when there was free movement. Life becomes very difficult for people with disabilities during natural disasters or pandemics. The fact remains, many persons with disabilities cannot do very hard labor work to earn money that will keep them and their families going. I am a million times grateful to my good neighbor who provided me 10 cups of rice that kept my family and I for a period of time.”
– Boakai Nyehn, young male, Monrovia, Liberia
“This is a photo of people living in recovery from mental health conditions. These people are in Bong County and the farm together as a group as you can see in the photo. This is helpful for their recovery management. Due to COVID-19 these people were not able to do this”
– Benjamin Ballah, male, 40-year-old, Liberia)
“The image of water that disconnects two communities. The COVID- 19 pandemic has added more problems to our existing problem which is mobility. The water disconnect two communities making it inaccessible for persons with disabilities.
-David Wallace, older male, Liberia

“During the lock down, all doors were closed to me because I was not able to get to my families and friends who are my sources of encouragement.”
– Sadiatu Kamara, female, Monrovia, Liberia
“Whenever it was curfew time during the lock down, the police will come into the communities and beat anyone they meet sitting outside or in front of their homes to make them go inside. This day they came and while running to get inside, as a person with disabilities, this was what happened.”
– Patience Duanah, aged 36, female, Liberia
“At about this time last year, before the COVID-19 outbreak, we traveled to Kenya for the Speak Your Mind Global Annual Planning meeting . Due to COVID-19, this year we had to do this meeting via Zoom.”
– Benjamin Ballah, 40 year old male, Liberia
“This picture of these fresh flowers reminds me of connection and growth. Whatever life’s situation is, once we are being watered by encouragement, we will still get reconnected.“
– Rose Dargbe, younger female, Liberia
“Health information was a serious problem for deaf persons during the COVID 19 because they had no one to interpret to them.”
– Patience Duannah, female, age 36, Liberia
“This photo reminds me of the COVID-19 outbreak in Liberia, how we were not moving around, and because of that we had much more time to share fun and ideas.”
-Jochebah Morweh, male, 26-year-old, Liberia).
“This is a picture of my sister playing basketball in the afternoon. We are homebound in this COVID-19 period. So, I try to spend good time with my family. If there was no lockdown, we would have been busy and I could not spend quality time with my sister. I am happy to see the smile on her face.”
– Israt Jahan Isha, 18-year-old, female caregiver of sister with physical disability, Bangladesh

“We have been in a financial crisis since last year due to the COVID-19 pandemic. Living in a lower middle-income family, we cannot share our problems with others. We have faced trouble to afford my son’s regular medicine for his special needs. I joined as a Nursing Officer in Dhaka Medical College last year but still I did not get any salary from there. Now I cannot go to work due to the lockdown.”
– Bithi Akter, 30-year-old female caregiver of son with cerebral palsy, Bangladesh
“As I have no disabled friendly washroom in my house, I always take the support from my mother for bathing. I live in a poor income family and you know that there are no special opportunities for us in village. So, this is a daily scenario for me.”
– Saddam Hossian, 25 years old male, Manikganj, Bangladesh
“Sometimes I feel depressed about my son’s uncertain future. I have to do a lot of work the whole day…. I have to spend more time to take care of my baby compared to his peers without disabilities. Sometimes it hurts me a lot…then I feel upset. Even some relatives and neighbors said that my second child will also be disabled….there is a chance for this…. Even my in-laws do not like me. There is ongoing a separation between me and my husband after my son’s birth. They think that I am responsible for my son’s disability.”
– Bithi Akter, 30 years old, female caregiver of son with cerebral palsy, Bangladesh
“The ambulance shows the issues which always brings tears to my eyes when I think of the day one my close disabled friend was taken to the hospital during the COVID-19 and unfortunately, he couldn’t make it.”
– Eric Solomon Biawogee, caregiver, 46 years old, Liberia
“Online classes started in April last year. After looking at the mobile or laptop screen for one and a half to two hours, can students keep full concentration on the online classes? I cannot do it. In the offline classes, we took part in the class in front of the teachers. By looking at student’s faces, the teachers could also see whether students have understood the work but in online classes, this is not possible.” Marjana Binte Forhad, 22-year-old female, Faridpur, Bangladesh
“This is my sister’s kitchen. But coronavirus has destroyed us. Often now nothing is cooked on this stove. My father doesn’t get the work like before. I am a student. So, we cannot take good care of her now.”
– Bisshojit, 22-year-old male caregiver of sister with psychosocial disabilities, Bangladesh
“You see he uses the mobile phone by using his legs. In this COVID-19 lockdown, he cannot meet with his friends that’s why he is trying to call them. He has many friends in the CRP, they are also disabled persons. He cannot speak properly but his friends understand his language.”
– Nasrin Begum, 35-year-old, female, caregiver of son with physical disability, Bangladesh

Acknowledgements

This research was conducted by Shahreen Chowdhury, Salma Akter Urme, Boakai A. Nyehn and Heylove R. Mark Sr. Thank you for support and mentorship from Laura Dean, Naomi B Harris, Tanvir Hassan and Sabina F. Rashid. Many thanks also to Keri Murray and Julie Irving for programmatic support.

This study is funded by the Royal Society of Tropical Medicine and Hygiene (RSTMH). This is a collaborative project with the Liverpool School of Tropical Medicine (LSTM), the National Union of Disabled People’s Organisations, Liberia and BRAC James P Grant School of Public Health (BRAC JPGSPH), Bangladesh.

The project is linked to the NIHR funded REDRESS consortium and the UKRI GCRF funded ARISE Hub.