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DEFYING THE MYTH

Carol Allen Storey | United Kingdom

Nelissa is in a car, returning home from a funeral of a family member who had succumbed to the COVID, driven by her husband Archie. During the drive, she participates in the weekly Zoom session with the other families who are participating in the Defying the Myth photo project. Her protective mask hangs around her neck. These are early days of the impact the pandemic as it takes its toll on the vulnerable. Photographed 27th April 2020 from the photographer’s home in London, England. Nelissa is Shoulana’s mother, one of the women featured in the photo essay. She is a poet and an active member of the program

During the Covid-19 lockdown, I conducted weekly Zoom sessions with the families featured in my long-term personal project; ‘Defying the Myth’ which chronicles the daily life of families who create safe and enduring worlds for their progeny living with disabilities. In the Zoom sessions they shared their innermost feelings about managing their challenges during the pandemic and also revealed dark secrets about their past which had never been discussed before.

 

Parenting and caring for a child with severe disabilities is an immensely complex affair. Parents must become experts in negotiating the endless bureaucracy of public institutions, which demand that they ‘prove’ their need for assistance. During the shutdown, support was minimalised giving rise to added responsibility providing daily care.

 

In capturing their extraordinary strength, these past 5 years and now during the COVID-19 pandemic this project challenges the myths surrounding disability and parenthood.

carol@castorey.com

+447710 077290 

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