The real heroes during this pandemic

Since the COVID-19 pandemic outbreak in December 2019 the world suddenly underwent a major abrupt change. The pandemic had uneven impacts on different groups of people and sectors of society (Thelwall & Thelwall, 2020). Especially marginalized groups, including people living with disability have been disproportionately affected by the impact of the pandemic (Andrews, Ayers, Brown, Dunn, & Pilarski, 2020).

By Alina Ruge

In collaboration with Harvard University we conducted a photography project called “Remember Now”. My peers and I from Campus Fryslân, University of Groningen have investigated the effects of COVID-19 on the lives of marginalized groups. The project reveals how people with disabilities, the elderly, or refugees cope with the pandemic. Especially in light of investigating the framework of intersectionality within my Diversity, Intersectionality and Global Health class, this was a research project close to my heart. Intersectionality in general describes the way in which interconnectedness of multiple vulnerabilities due to social categorizations (such as gender, race, or class) can create new forms of disadvantage and realities for either individuals or groups. It is regarded as an overlapping system of discrimination and disadvantage. In this study, intersectionality was about being disabled and living in a nursing home. That person would experience the situation really different, than someone who is either disabled and lives at home or someone who lives in a nursing home without any disabilities. The interplay of two different aspects creates different circumstances for that person. This example clearly shows why we need to take intersectionality of the interviewees into account when conducting research.

In this blogpost, I am going to talk about how the pandemic has affected Maaike, a mom of three children, who has a son living in an institution for children with disabilities in the Netherlands. Her son is 26 years old but his cognitive development is far lower (her mother referred to it as a mental stage of a one year old). Through her story, I will show how people like him (with that level of disabilities, living in an institution) have been affected in their mental and physical health by the pandemic. The control of the pandemic is now a global concern and we have seen major influences on people's mental health through measures implemented such as social isolation and distancing as well as a lack of structure in daily routines (Jalali, Shahabi, Bagheri Lankarani, Kamali, & Mojgani, 2020). Individuals and especially those with severe levels of disabilities can largely struggle with making those adjustments in their day to day life. Maaike’s son has also shown signs of distress through an inability to go to sleep. This change of behaviour arose when the lockdown started and his medications had to be levelled up again even though the medications had been stopped before the pandemic. Moreover, not only her son but also other people in the institution showed signs of stress and unease through for example changes in their behavior. Tandon (Patel, 2020) has also pointed out in her work that the experience of negative emotions and changes in sleeping and eating behaviour has put individuals at a higher risk of exacerbating existing issues which this example clearly shows.

Since the lockdown started, Maaike’s communication with her son has greatly changed as a result of restrictive measures. She was not allowed to see him anymore for eight weeks. Finally, after two month she got the possibility again to see him, because his condition was getting worse, in other rooms within the institution (the theatre room). Because he loves listening to music she played the piano for him. He does not understand language and that’s why playing the piano is a great way for her to bring him joy. After the situation got worse again she kept on sending videos of her playing the piano to the institution and they screened it on a TV which contributed to his mood getting better. In addition to that, the daily lives of the individuals living in the institution were shared via social media with parents and relatives. Social media has been a great tool for sharing information and keeping social contact in times of social distancing. This is especially crucial for relatives or individuals being able to use social media. Maaikes son has a very bad eyesight and therefore it is not possible for him to be taking part in it. When Maaike bought a new coat for her son she was able to see him wearing it in a picture shared on Facebook. Not only do these pictures bring light in the darkness of the circumstances but also offer ways for marginalized groups to seek help and connect with people who find themselves in similar situations (Thelwall & Thelwall, 2020).

Many people around the globe have learned new ways on how to adapt to new circumstances. A story of hers that really touched me was about Mother’s Day. Normally, all mothers would come and visit their children on Mother’s Day but to avoid any risks of infection they weren't allowed to do that this year. Instead, the institution drove around with a minivan to all of the mother's houses so the mothers could see their children through the window. For Maaike, it was a ray of hope because she wouldn’t have thought that her son would recognize her through the window. Firstly, because of his bad eyesight and secondly, because he hasn't seen her for a longer period of time. When he waved and stood up to get out of the van she felt very relieved and happy.

What was in general really remarkable for me while interviewing her and my other participants were their happy and positive attitude. In contrast to many people complaining about the pandemic, who are not as affected by COVID-19, she was seeing the little accomplishments and happy moments. She does not seek pity from others but even helps people outside of her family. For example, she volunteered to help vaccinate hundreds of people against the flu in her spare time. People like her are the real heroes during this pandemic and we should all take her as a role model to go through this uncertain time alltogether!

Andrews, E. E., Ayers, K. B., Brown, K. S., Dunn, D. S., & Pilarski, C. R. (2020). No Body Is Expendable: Medical Rationing and Disability Justice During the COVID-19 Pandemic. American Psychologist. https://doi.org/10.1037/amp0000709

Jalali, M., Shahabi, S., Bagheri Lankarani, K., Kamali, M., & Mojgani, P. (2020). COVID-19 and disabled people: perspectives from Iran. Disability and Society, 35(5), 844–847. https://doi.org/10.1080/09687599.2020.1754165

Patel, K. (2020, December 1). Mental health implications of COVID-19 on children with disabilities. Asian Journal of Psychiatry, Vol. 54, p. 102273. https://doi.org/10.1016/j.ajp.2020.102273

Thelwall, M., & Thelwall, S. (2020). COVID-19 tweeting in English: Gender differences. Profesional de La Informacion, 29(3), 1–7. https://doi.org/10.3145/epi.2020.may.01