History and Future of Sibling-Disability Research

By Ariella Meltzer and John Kramer

Two young girls, one with a visible disability who uses a wheelchair.

Our article, ‘Siblinghood through disability studies perspectives’ published at Disability & Society, is about sibling-disability research. Sibling-disability research is research about siblings where one has a disability. The article is about the history of sibling-disability research and possibilities for it in the future.

The first part of the article is about history. The article explains that most sibling-disability research has so far been about the impact of disability on what siblings of people with disabilities think and feel – their psychology. The article suggests that this focus came about because of the institutionalization and de-institutionalization of people with disabilities. Protecting siblings’ wellbeing was one of the reasons that parents were encouraged by professionals to send their children with disabilities to institutions in the 1940s and 1950s. When de-institutionalization then started from the 1960s, there was a lot of concern about the impact on siblings and this spurred research into siblings’ psychological outcomes. Since then, a lot of sibling-disability research has been about psychology, and this means that now a lot is known about this, but other areas have not been explored as much. For example, there has been less research about how siblings’ experiences are shaped by services and policies, about the experiences that siblings both with and without disabilities share together or about the perspectives of people with disabilities about their brothers and sisters.

The second part of the article is about future possibilities. The article suggests that using ideas from ‘disability studies’ can create new areas of research about siblings and disability. ‘Disability studies’ looks at how experiences of disability are shaped by what society is like and by politics, policy and services. The article suggests three examples of how ‘disability studies’ ideas could be used:

  1. It could create research about the effect of siblings’ working conditions – for example, about how low-paid or unstable jobs can affect how much time siblings with and without disabilities spend together or how much of a role in care siblings can have or it could create research about how both siblings may benefit when people with disabilities are supported to find employment.
  2. It could create research about how siblings of people with disabilities use the knowledge they have learnt at home from their brother and sister to help them promote inclusion or challenge ideas of what is ‘normal’ in society.
  3. It could create new types of sibling-disability research where siblings both with and without disabilities are involved in saying what the research should be about and how it should be done or where both siblings work together to actually do some research themselves.

In the end, the article says, adding these new types of research will be useful for understanding more about siblings’ experiences. It will make sure that sibling-disability research is about a range of topics and this range of research is very important for having a practical and beneficial impact on lots of different areas of siblings’ lives.

This is a summary of: Meltzer, A. and Kramer, J. (2016) Siblinghood through disability studies perspectives: Diversifying discourse and knowledge about siblings with and without disabilities, Disability & Society, 31:1, 17-32.

If you work for a university, you can get a copy of the article here.

If you do not work for a university and you need a free copy of the article, please contact Ariella Meltzer at a.meltzer@unsw.edu.au or John Kramer at John.Kramer@umb.edu.

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