“Just Sumaira: Not Her, Them or It”
This chapter explores the impact of documenting the lives of children living with disability and long-term medical conditions, particularly through photographs and images. I argue that disabled people and people with long-term medical conditions, like everyone else, should consent and control the way in which their lives are documented. I draw on my experiences of being photographed and researched in medical research without a full understanding of who could access such information and what they would make of it. I believe that this practice is unethical and that everyone should be able to tell (or choose not to tell) their story. No story is worth telling or writing if it harms the people it affects even if it is documented for some perceived greater good and might help someone else, although this is often the way that medical or social research (in particular but not exclusively) is justified.
I thank all of those people who took part. I appreciate the support of the organisers Tillie, Katherine and Kirsty in this work and particularly I am thankful to family members who offered an immense amount of support which enabled me to do this work: my brother Nadeem who enabled me to create the images for this book chapter.
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