Political representation is a thorny topic in contemporary disability studies and activism, particularly with reference to persons with intellectual disability. The politics of who speaks for whom intensifies in the case of people who might face significant difficulties with communicating independently, and the vast spectrum that this diagnostic category encompasses makes it difficult to identify the shared interests and experiences around which identity politics typically mobilize. The barriers and challenges that a self-advocate with Asperger’s who tours the country delivering motivational speeches might experience are very different from those experienced by a person with a more profound intellectual disability living in an institutional setting, as are the political resources and policies that would enable each of these individuals to overcome these barriers and live the best possible lives.
Both Stacy Simplican and John Pitney provide fascinating insights into the history, culture, and achievements of disability advocacy groups, as well as the challenges facing them. Both authors explore how these organizations confront questions that are familiar but also challenging to scholars within political science and philosophy: How is disability represented as a different sort of problem (medical, cultural, political) by different actors within the disability sector, and how does this affect the political claims that they articulate? How can difference be respectfully managed with and between diverse communities, not only along traditional axes of privilege, such as gender, class, and ethnicity, but also in terms of cognitive capacity and communicative competence? Who is authorized to speak on behalf of people with intellectual disability who are unable to articulate claims in the political sphere: parents, allies, or those who fall elsewhere on the spectrum of the same broad diagnostic category?
The similarities end there, however. Simplican’s The Capacity Contract and Pitney’s The Politics of Autism plot very different courses on the spectrum of scholarly writing about disability, navigating different disciplines, styles and audiences, and the authors construct the problem of representing people with disability in the political domain in very different ways.
For Pitney, the problem appears to be primarily an ontological one. There is so much uncertainty surrounding autism, about its etiology, the cause of increasing prevalence rates, and the effectiveness of the baffling array of therapies and treatments available on the health market. Autism policy is highly complex, cutting across the domains of health, education, law, employment, social services, and income support, involving all levels of government. These conditions of uncertainty and complexity mean that on the political stage, there is “general agreement to ‘do something’ about autism” (p. 33), as he comments in Chapter 1, but the question is what that something is.
Pitney’s prose is eminently readable, with a mix of informed commentary, anecdotal qualitative insights, and statistical data that will introduce “outsiders” to the experiences of people with autism and their families in an accessible and engaging manner. But for those who are not new to the field, there may be little original or surprising here; Pitney offers a bird’s-eye view rather than a particular perspective on autism politics.
Chapter 2 provides a brief history of the public perception and treatment of autism. Chapter 3, which seems to be the heart of the book, centers on autism science, describing the contested political interests that determine national research and funding priorities. A prevailing assumption within the scientific community is that autism is a disease or disorder in need of a cure, whereas self-advocates argue that the hundreds of millions spent on “curing” and “combating” autism would be better spent on improving services and opportunities.
Unequivocal in his argument that any link between autism and vaccines has been thoroughly discredited scientifically, Pitney nonetheless deals sensitively with the reasons why some in the autism community persist in this belief. It is a pity, though, that he does not extend this painstaking coverage to other controversial issues, such as the hotly contested topic of “facilitated communication” (FC), despite including quotes from some users of this communication technique (pp. 6–7). FC, or supported typing, involves a facilitator guiding or supporting the hand or body of a person with disability as he or she strikes the keys on a keyboard. While championed by some disability advocates, it is widely discredited within the scientific community. From a political perspective, the practice of FC raises serious issues around power and self-representation.
The complex relations among local schools, state education boards, and federal legislators are examined in Chapter 4. Despite federal laws guaranteeing children a right to free and appropriate public education, parents are often forced to battle education boards in the courts before schools will deliver. Chapter 5 describes life after school. For a non-US-based reader, Pitney’s detailed description of the complexity of the U.S. health-care system is particularly noteworthy, portraying a system that seems driven by the logic to entrench social inequalities rather than mitigate them. The author estimates that only a minority of people with autism are currently covered for autism-related services under health insurance. There are few other sources of services for adults: The period after school is described as “the cliff” (p. 88); once ejected from the education system, many people with autism and their family members find themselves in freefall. Those with social capital and resources may be able to negotiate the confounding service systems and fight for more, but those who are too poor or exhausted or who live in the “wrong” jurisdiction will struggle to do so.
In contrast to Pitney’s focus on ontological uncertainty—the puzzling nature of autism that makes effective political mobilization and policy intervention difficult—for Simplican the political representation of people with intellectual disability is a historically and culturally constructed problematic. Locating her work within the critical social contract tradition pioneered by Carol Pateman and then Charles Mills, Simplican argues that democratic theory has always entailed a “capacity contract” that excludes people with intellectual disability from the political community.
Like the sexual and racial contracts, the dynamic of the capacity contract is domination and disappearance, excluding those who fall below a threshold level of cognitive competence. The capacity contract erases cognitive difference through the insistence that the social contract is universal and we are all created cognitively equal. This erasure is motivated by anxiety, as the idealized rationality that the political subject is said to exercise is a fictive one, and “we remain anxious about our own and each other’s cognitive abilities in the face of an ever-complex governance order” (p. 5).
Simplican weaves in and out of the abstract realm of political theory and the everyday lived realities of people with intellectual disability, straddling the disciplines of political philosophy and disability studies, and making important contributions to each. One of the most interesting contributions is to illuminate how critical social contract theorists such as Pateman and Mills fall into the trap of reinscribing rather than challenging the domination of people with intellectual disability. Even the self-advocacy movement, by emphasising capacity in its claims for political recognition, often does so in a way that marginalizes people with more profound intellectual disability. Such strategies rest on an assumption that there is some group of people who are truly incompetent, and whose exclusion from the political community is justified.
In Chapter 1, Simplican discusses the ambiguous figure of “the idiot” in the political theory of John Locke. She shows that confronted by his commitment to the principle of individual autonomy, on the one hand, and his anxiety about the capacity of all human beings, on the other, Locke formulated a domination capacity contract that excludes those who fall beneath a cognitive threshold. She argues that there is another type of capacity contract recoverable in Locke’s thinking, however, one that views incapacity as central to the human condition and bases democratic solidarity on shared vulnerability.
Chapter 2 examines how intellectual disability was constructed as a population health problem by medical professionals in the 19th and early-20th centuries. These professionals actively manufactured anxiety by linking “idiocy” with racial and moral inferiority in eugenic discourse “to garner public financial support and build legitimacy for their field” (p. 49).
Chapter 3 focuses on John Rawls’s “double disavowal of disability” (p. 72): His idealized conception of personhood excludes people with intellectual disability from full human status, and his depoliticization of disability disavows the role that compulsory cognitive capacity plays in defining personhood and the scope of politics in his theory. The chapter also critiques a number of revisionary responses to Rawls from Iris Marion Young, Martha Nussbaum, and others, arguing that implicit biases about cognitive capacity continue to stigmatize people with more profound intellectual disability in their works.
In the last two chapters Simplican turns to an ethnographic study of self-advocacy organizations. In Chapter 4, she rethinks the concept of political agency through a reworking of Hannah Arendt, for whom politics is performative, spontaneous, and unpredictable. Simplican argues that political empowerment is about actions and relationships rather than cognitive deliberation: “If eating dinner in public forges new relations and challenges entrenched ableist boundaries” (p. 100), perhaps it should count as political action. For many marginalized groups, appearing in public can be a political act, and certainly for people with disability who may threaten social order, norms, and conventions in their appearance and behavior.
The final chapters of both books conclude in remarkably similarly ways: by stressing that we need to listen to the voices of people with intellectual disability and people with autism. Although an important sentiment, it was unsatisfying in both cases because both authors miss the opportunity to tease out the political and personal complexities that surround self-representation.
A recurring theme in The Politics of Autism is the way in which social positioning is a major factor concerning whose voice is heard in autism politics: how wealth, education, class, ethnicity, and communicative competence largely determine the extent to which individuals are able to engage in self-advocacy. Given this, the discussion in the final chapter of the benefits of tax-reduced, special-needs trust funds (pp. 110–11), which surely only a privileged minority can set up and contribute to on behalf of family members with autism, strikes a discordant note.
In the final chapter of The Capacity Contract, Simplican suggests that “alliances, humor and dance” offer ways of expanding our democratic imagination to include those with intellectual disability. This appeal seems misplaced, given that the chapter begins with a sobering personal reflection on her brother’s life in an institution-like facility for people with disability.
Both books would have benefited from some acknowledgment of the limitations of the debates raised by the authors: Without societal resources directed to community living and social participation, and without community commitment, the voices of the vast majority of people with intellectual disability and people with autism will never be heard at all. This reflects a much broader “cultural turn” in contemporary disability studies that focuses on the performance of marginal identities. While yielding interesting and important work, this cultural model of disability needs to be recoupled with the transformative potential of the social model of disability or the normative force of a human rights model, both of which delineate clear social duties toward enabling the representation of marginalized groups. Overall, however, both authors navigate with and between these different approaches with skill and make significant inroads toward putting disability on the agenda of mainstream political science.
