The Politics of Down Syndrome (Kieron Smith, Zer0, 2011) is an attempt at a primer on some of the social, ethical, and political issues that surround Down syndrome. With chapters on prenatal diagnosis, education, ‘comedy’ that trades on disability as a punchline, and how the personal becomes political, Smith concludes with a discussion on what members of society can do to address ableism and inequality.
The text, unfortunately, has a number of shortcomings. For people unfamiliar with the issues Smith discusses, the excellent sourcing and detailed resource list at the conclusion of the book may make a jumping-off point to more research and exploration not just of Down syndrome, but of disability issues in general. In this sense, it succeeds as a very general broad overview of the topic, which is Smith’s stated intent in the introduction. However, there are some glaring absences in the book that may make it inadequate even for this purpose.
Smith claims that ‘There are numerous medical and self-help titles, there is also a plentiful supply of books that address disability from an academic standpoint – this aims to be neither of these, but rather a political title…’ and stresses that Down syndrome is a political and social issue, not a personal one. On this score, I agree, but Smith’s approach to the discussion contains some fundamental issues.
This text does not include very much discussion of disability theory, as readers are warned in the introduction. It’s an unfortunate omission, because disability theory plays a key role in social and political perceptions of disability. Disability theory is rooted in responses to society and culture from disabled people (although of course nondisabled people also participate) and it is not just academic. Disability rights activists and the disability justice movement are not limited to the academy, and their exclusion from a text that claims to address disability as a political topic is a grave omission. While Smith certainly touches upon some topics like the social theory of disability, the text as a whole clearly reads through a nondisabled lens.
Disability rights activists stress ‘nothing about us without us,’ and this should include critical discussions of the political issues surrounding disability. Smith’s quotes and resources heavily slant in a medicalised direction, although he also includes some discussion from philosophers and ethicists, with a focus on nondisabled people writing about disability. There are few quotes from disabled people themselves. Disability rights activists are strangely absent from much of the text, and are often not named as such; Sunny Taylor, for example, is quoted but no context is provided. When he does discuss activism, he focuses primarily on the actions of himself and his wife, not the disability community.
Smith brings up an incident that occurred in 2003, when demonstrators picketed the meeting of the International Down’s Syndrome Screening Group, demanding that people with Down syndrome be allowed to contribute to the meeting. The group eventually allowed one activist (though Smith is careful to avoid this word) to speak, and commented dismissively about bringing ‘personal matters’ into the conference. Smith rightly points out that conferences about disability topics should include disabled people, but seems to fall short of recognising the same problem in his own text.
This text approaches Down syndrome from what appears to be a nondisabled perspective, by an author who doesn’t identify with the disability rights movement. Examples of the nondisabled gaze are rampant in the literature about disability, and adding yet another is of questionable merit. Not only is he not disabled, but he’s the parent of a child with Down syndrome, which adds a note of complexity to his handling of the subject. There’s a long history of tensions with parents of children with disabilities speaking for them, in commentary that sometimes runs contrary to the beliefs of the disability rights movement, and to their children themselves.
This does not mean that parents of disabled children are not allowed to speak, or should not advocate for their children—a fierce parental advocate can sometimes be the only thing that ensures a disabled child isn’t marginalised in educational settings, social settings, and the world in general. It does mean that parents need to be extremely cautious about how they present themselves, and some of Smith’s comments about his daughter veer into inspirational territory, which is something people with disabilities have long fought hard against.
Despite a stated desire to avoid academic language, to write a plain text primer that will be accessible to readers from a wide variety of backgrounds, The Politics of Down Syndrome has a strong pseudoacademic feel, perhaps not surprising from a member of ‘the world’s leading academic research based Down syndrome charity.’ Much of it is a rehash of work done by others, though this is not necessarily a problem in a primer, where the primary goal is to present information from a broad spectrum of sources to provide an overview of the topic. Smith relies heavily on quotes from a variety of sources, ranging from newspapers to philosophy texts, to inform readers.
However, the attempt at an academic tone clashes with the personal authorial insertions scattered throughout the entire text, particularly in the chapter on comedian Frankie Boyle and Smith’s activism in response to an offensive skit targeting people with Down syndrome. The book also has a highly disorganised feel; individual chapters wander considerably, topics are put to rest and then brought back up 20 pages later, and the result is an extremely uneven flow and tone.
The flaws with this text are unfortunate, because the core idea is an extremely sound one, and Smith and I are most certainly in agreement that people with Down syndrome are excluded from society and that this is a political issue. The general public is not aware of many of the issues surrounding Down syndrome, and a general, accessible overview on the topic could be a valuable contribution to public discussion.
The lack of integration of disability rights activism in particular is a great pity. Smith could have included a chapter highlighting this topic, or expanded his chapter on the personal and political, and provided further resources for readers interested in hearing about disability from people with disabilities, and learning more about the actions taken by the disability rights movement in its fight for full equality. He also could have centred the voices of more people with disabilities in the text to stress that we should be allowed to speak for ourselves. Failing to include this leaves the text fundamentally lacking as a primer on this subject.