“Just Sumaira: Not Her, Them or It”

  • Sumaira Khalid Naseem


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.


  1. Allan, K. (2012). Contemporary Social & Sociological Theory: Visualising Social-Worlds. London: Sage.Google Scholar
  2. Breeze, Jean ‘Brinta’ (2013). The Forum. BBC World Service, First Broadcast on 16th March 2013 at 13.05.Google Scholar
  3. …. “Ethics” Definition. Oxford English Dictionary Online. Accessed on 28 Sep 2016a at 17.35 BST.
  4. McLaughlin, J. (2013). Digital Imagery and Child Embodiment in Paediatric Genetics: Sources and Relationships of Meaning. Accessed 28 Jun 2016.
  5. Naseem, S. K. (2013, June 18–19). Ending the Immoral Exploitation of Disability in Childhood. Paper Presented at Child, Youth, Family and Disability Conference, Manchester Metropolitan University.Google Scholar
  6. Naseem, S. K. (2015, June 7–8). Not Her, Them or It. Workshop Facilitated at Child, Youth, Family and Disability Conference, The University of the West of England, Bristol.Google Scholar
  7. Naseem, S. K., & Burke, L. (2015, December 16). Writing an Ethical and Holistic Story of a Long Term Medical Condition Using a Multisensory Transdisciplinary Lens: The Case of Epidermolysis Bullosa. Paper Presented at the Symposium of Literary and Cultural Disability Studies at Liverpool Hope University, Liverpool.Google Scholar
  8. …. Values as Related to Ethics and Principles. . Accessed on 28 Sep 2016b at 17.50 BST
  9. Wenzel, J. (2013, April 29). Reading for the Planet: World Literature and Environment Crisis. Public Lecture Given as Part of the Humanities in Public Series, Manchester Metropolitan University, Manchester.Google Scholar

Copyright information

© The Author(s) 2018

Authors and Affiliations

  • Sumaira Khalid Naseem
    • 1
  1. 1.Manchester Metropolitann UniversityManchesterUK

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