Book review - Allies and Obstacles: Disability Activism and Parents of Children with Disabilities

In this blog post Dr Carey-Ann Morrison, Senior Researcher at Imagine Better, reviews the book Allies and Obstacles: Disability Activism and Parents of Children with Disabilities.





Allies and Obstacles: Disability Activism and Parents of Children with Disabilities
By Allison C. Carey, Pamela Block and Richard K. Scotch
Temple University: Philadelphia 2020


One of the areas that Imagine Better is interested in is social movements and how they work to create social change. Social movements are collective forms of action that aim to challenge existing structures of power that have created inequality, injustice, and disadvantage. One area we are particularly interested in is the role of allies in social movements, and in particular, the role of allies in the disability rights movement. The disability rights movement challenges the systemic discrimination and marginalisation of disabled people. Several of us identify as allies to the disability rights movements through our position as non-disabled parents to disabled children. We want to continue to think critically about this position in order to ensure that we help rather than hinder the movement.

“Allies and Obstacles: Disability Activism and Parents of Children with Disabilities” provides a historical analysis of the place, role and politics of parent activists/organisations within the disability rights movement in America. It considers the various ways that parent organisations have worked in their communities based on their understanding of the needs of their disabled children, and how these organisations have been viewed by disabled activists and Disabled Persons Organisations. The book draws attentions to areas of convergence as well as conflict between parent activists and disabled activists. The title itself highlights the shifting position occupied by non-disabled parents within the disability rights movement, at times being an ally by supporting disability rights, advocacy and justice, while at other times perpetuating paternalistic and medicalised models of disability and in doing so acting as an obstacle to progressing the collective rights of disabled people.

The book is divided into two sections. The first section explores the relationship between parent activists and disability activism through impairment specific case-studies, with chapters dedicated to intellectual/learning disability, mental illness, autism, and physical impairments. A notable omission is detail on experiences of parents who have blind and/or Deaf and hard-of-hearing children. The second section offers a cross-impairment analysis around different themes such as: historical contexts and timing of the emergence of parent activism; comparison in focus and theoretical/policy approach between parent organisations and Disabled Persons Organisations; activism strategies used by parent organisations; parent’s understanding and use of the term ‘disability rights’; and, advocacy issues across the life course.

A strength of the book is that continually holds in tension the differences in focus and approach between non-disabled parents and disabled activists. This is useful because it shows that being an ally is not a fixed, permanent state, and that being a parent to a disabled child does not automatically make you an ally to the disability rights movement. Moreover, it shows that polarizing portrayals of parents as either ally or obstacle are unhelpful. It acknowledges the numerous and hard-fought successes parents have achieved in their fight for the rights of their disabled children and the huge pressures parents face navigating a complex bureaucratic disability support system that is under-resourced, while at the same time, demonstrating the ways in which some parent’s activism for their children doesn’t always align the intent and philosophy of the disability rights movement. As the authors show, this tension plays out across a range of issues, including the use of segregated versus community settings, imposed treatment versus self-determination, medical intervention versus the need for access and support, normalisation versus disability pride, mandated supervision versus access to privacy.

The authors provide a useful reflection on the role of allies within social movements. They explain that social movements often seek allies who not only have a shared commitment to a social issue, but also display a commitment to the identity politics of the movement. This means acknowledging power and positionality – who has the right to speak about an issue, prioritising collaboration over individual interests, and showing support for an issue, even if it doesn't immediately affect you. This is useful for thinking about how non-disabled parents support disability activists.

To conclude, I quote directly from the book:

"Together we can demand the rights and supports that we need to live fulfilled, active, and meaningful lives. This does not mean that we are all going to agree, but we need to engage in the conversation and look earnestly for ways to provide uplift for people across disabilities, races, sexualities and socioeconomic classes." (p. 257)

Image Description: The cover of the book which includes the title, authors names and publisher, as set out below. In the centre of the cover is an decorative image of a red heart, set against abstract splashes against a white background.