Every human community includes wide neurological variation among its members. Every society charts its own path to recognize or ignore, regulate, and respond to this biological fact. The modern field of disability studies has chronicled many of these paths. Our own society faces many economic, medical, ethical, and legal choices in responding to conditions as varied as schizophrenia, attention deficit hyperactivity disorder, and Down syndrome.
Dana Lee Baker provides a useful account of the competing political, medical, and cultural narratives through which these choices are framed, particularly choices involving autism, which provides the most obvious context for much of her argument. Baker's prose can sometimes be forbidding. At times, I wished for more specific doses of legal-policy analysis provided by scholars such as Samuel Bagenstos, on whom Baker occasionally relies (“The Future of Disability Law,” Yale Law Journal 114 [2004]: 1–84). It is telling that the terms “SSI” and “health reform” are absent from Baker's index and account.
Yet my latter wish is unfair to the author. Whatever the virtues of a different volume, Baker's has much to offer. Drawing upon an impressive array of sources, this useful book belongs on the shelves of anyone working in disability studies and disability policy.
The book's main contribution and organizing frame is to present a taxonomy of four agendas that in some combination shape much of disability policy: cause, care, cure, and celebration.
Cause denotes a basic struggle to establish and protect civil and human rights. Readers need scarce reminder of the profound mistreatment imposed upon individuals who depart from neurotypical norms. (Those who need reminding might read James Trent's classic Inventing the Feeble Mind: A History of Mental Retardation in the United States, 1994). It is still jarring to read that until 1974, Chicago's Municipal Code held: “No person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object or improper person [is] to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view under penalty of not less than one dollar nor more than fifty dollars for each offense” (p. 32).
No less fundamental is the care narrative, which encompasses maintenance and rehabilitation tasks, which are often required to address human needs that accompany neurological difference or functional limitation. From a political perspective, care efforts mobilize public empathy and compassion, and can thus attract substantial resources through Medicaid and other programs.
Beyond maintenance or rehabilitation, the cure narrative represents the aspiration that intervention (typically medical) can repair functional limitations that so often accompany neurological differences.
The celebration narrative is perhaps the most novel. It embraces the characteristic achievements and capacities of individuals with neurological difference.
No one of these narratives is more worthy or compelling than the others. Individuals who experience neurological difference need legal protections against discrimination. Many require a range of care and practical help. Others hold out hope for a cure for cruel and disabling limitations. Millions of people wish to celebrate their accomplishments and skills, and those of their peers.
Yet each of these narratives provides some occasion for disappointment. Baker also describes many ways in which these narratives come into tension with one another. Chapter headings outline the basic story: “Securing Civil Rights vs. Providing Care,” “Providing Care vs. Finding a Cure,” and more.
To give one obvious example, disability rights advocates draw inspiration from the Civil Rights movement. Yet nondiscrimination norms and policies do not address many issues that men and women with functional limitations confront. Many Americans who face intellectual impairments require costly services, medical care, and income maintenance. Others require community-based supports to promote self-sufficiency or to provide humane alternatives to institutionalized care.
Conversely, provision of care provides discomfiting opportunities to buy off or to control client constituencies. The provision of monthly financial and health benefits may be cheaper than the services and modifications required to genuinely open employment, transportation, and civic infrastructure. Many within the disability rights movement have viewed disability programs such as Supplemental Security Income with some suspicion, as mechanisms that perpetuate dependence without true inclusion in civic life.
Care is easily provided through a heavily patronizing overlay. Efforts to isolate or institutionalize autistic or intellectually disabled children are frequently justified through claims that these citizens require specialized, professional protection and care (p. 60). The acceptance of intensive services may also implicitly weaken individuals' claims to equal citizenship.
The cure narrative may be the most seductive, and thus most ripe for betrayal when the promised cures do not come, or when promised cures prove less complete or more flawed than originally hoped. Exclusive focus on cure can divert attention from efforts to live resiliently with long-lasting conditions.
The quest for a cure can also divert attention and resources from more immediate possibilities to improve people's lives. Millions of children experience learning disabilities that hinder their academic progress. Few policymakers can (or should) oppose research into the biological mechanisms that underlay these disabilities, and that may eventually provide possibilities for treatment interventions. Yet a policy agenda that emphasizes a scientific “search for a cure” easily sidesteps more costly efforts to provide individualized educational supports for children outside the medical arena.
When advocates emphasize the urgency of cures—for example, in competing for National Institutes of Health research funds—the most politically fruitful path may be to emphasize the suffering and limitations of those most severely affected. This discourse all too readily reinforces stigma, and may downplay the possibilities and life experiences of more high-functioning people who have been diagnosed with the same condition. Baker notes that the search for cures ratifies an essentialist view of what disability is (p. 87). Cure is presumed to work by changing the body or mind of the person receiving the cure, rather than through changes in larger environmental factors or infrastructures that can convert intrinsically benign neurological differences into impairment or disability.
The celebration narrative is ripe for betrayal in different ways. If cure fosters a discourse of disability and impairment, celebration threatens to promote the opposite distortions, presenting for public view the most high-functioning individuals, while downplaying the experiences of others who face more significant limitations. The life story of a computer entrepreneur with Asperger's reveals little about what should be done to assist a young person facing more profound behavioral and intellectual difficulties. The celebration narrative may lead communities brought together under the banner of difference to regard opportunities for cure and repair as a threat or an implicit insult.
Moreover, not every experience associated with neurological difference can or should be celebrated. Depression, Asperger's syndrome, and intellectual disability bring real suffering (pp. 118–20).
The quest for solidarity (in pursuit of celebration or in pursuit of cure) can also render communities vulnerable to ill-founded beliefs and groupthink. In an otherwise admirable book, Baker herself is unduly solicitous when discussing the alleged links between vaccines and autism. She writes “As a matter of political discourse, opponents of vaccine theories typically describe a scientific consensus surrounding the matter, more often blatantly ignoring rather than bothering to discredit other research” (p. 201).
Some parents believe that there is a causal link, but there is not. Excellent epidemiological investigations in several countries have explored and settled this controversy. Unfounded claims that vaccines cause autism have brought real harm.
A short case study of the documentary Autism: The Musical provides one high point in the book. This 2007 film went on to win two Emmy awards. The film, and its description by Baker and others, also admirably combined all four narrative arguments in presenting the human faces of children with autism-spectrum disorders.
As Baker notes, Autism: The Musical is not really a musical at all. Rather, it “chronicles the experience of making an original musical using the talents of children with autism” (p. 183). Showcasing the individual talents and personalities of charismatic kids who fall on various points of the autism spectrum, the film provides much to celebrate. Yet it does not sugarcoat the chronic burdens imposed on these children and their families. Nor does it sugarcoat the exclusion these children experience. One child describes his experiences of being bullied: “Maybe if I got into a regular class then I'd show the bullies that I—how—how I can deal with a regular class, they're not going to bully me, maybe …” He pauses and then continues more quietly. “They'll still be cruel in a main-stream class. I know that. I know they will” (Caroline Grant, “Autism, the Musical,” Mama at the Movies 2008; quoted on p. 186).
A just educational environment would not include such routine cruelty. At least with documentaries such as this one, the cruelty sees the light of day and can be addressed rather than ignored or tacitly tolerated.
Baker notes that the “age of disability as a completely private experience has passed into history” (p. 216). This is surely correct. Forty years ago, this book could not have been written. There was scarcely a language to describe neurodiversity, let alone a real politics through which individuals living with neurological difference could make credible claims on the polity. Now this politics exists. Its attendant tensions and complexities, difficult as they can be, are markers of genuine social progress.
