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Caregiving, Services, and Advocacy Among Siblings of Individuals with Disabilities
American Association on Intellectual and Developmental Disabilities (2015)
  • John Kramer, University of Massachusetts Boston
In today’s presentation, we will make a case for how and why a critical disability studies perspective would deepen and strengthen our knowledge about the lifelong experiences of siblinghood. We have a wide range of goals today and will present for you some of our current thinking on this relatively small, but expanding interest in sibling-disability research. First, we highlight how sibling disability research has differed and been narrower in focus than other research about siblings where neither has a disability and trace the reason for this to institutionalisation and deinstitutionalisation. We then identify the impact of the overwhelmingly psychological framing of most historical research about siblings without disabilities, highlighting how this has led to a ‘tragic’, medicalised framing of their experiences and to the marginalisation of people with disabilities from the field. Through a review of the literature, we highlight how this framing persists across the life-course. Finally, we identify some newer sibling disability research that has taken on more of a critical disability studies perspective, including hearing the voices of siblings with disabilities, and make an argument for how and why this improves the representation of siblings’ experiences. In ending the discussion, we suggest some future possibilities for how continuing to extend this critical disability studies perspective can continue to strengthen the field by showing how siblinghood intersects with disability and family identity, life course and privilege.
  • siblings,
  • disability,
  • I/DD,
  • intellectual and developmental disabilities,
  • Disability Studies,
  • Family
Publication Date
Summer June, 2015
Citation Information
John Kramer. "Caregiving, Services, and Advocacy Among Siblings of Individuals with Disabilities" American Association on Intellectual and Developmental Disabilities (2015)
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Creative Commons License
Creative Commons License
This work is licensed under a Creative Commons CC_BY International License.