The Question is not what is real, but which reality is important. 

Michael Foucault, the prolific French philosopher cum sociologist, was all about difference and the means by which people were marginalized in history and by society. Curiously, he never wrote about "disability" although he was at his most prolific in the decades that saw the birth of the modern "disability movement". Shelley Tremain, editor of a new reader, Foucault and the Government of Disability, seeks to rectify that lack through a series of chapters that attempt to apply Foucault's thinking to the debate over the meaning of physical and cognitive difference.

Like the work of Foucault itself, the contributions to this volume are enticing, frustrating, and ultimately, unsatisfactory. Shelly Tremain's long chapter introducing the volume, for example, is the best of the bunch. It offers a superb introduction to Foucault and his writing. It fails, however, in its application, almost wholly ignoring the history of "sociopolitical conceptions of disability" to focus on Foucault's concerns over legitimization and power. "For during the past two centuries, in particular, a vast apparatus, erected to secure the well-being of the general population, has caused the contemporary disabled subject to emerge into discourse and social existence," she writes.

The apparatus she refers to is a "bio-power" Foucault defines as a method of public accountancy that took the statistics of people-at-large to create the idea of a population whose general rather than specific realities were its focus. The history glossed over here ignores a complexity neither Foucault in his writings nor his intellectual descendents in this volume appear able to engage. Historians and scholars of specific conditions and writings make clear how rich but also varied that history is. Alice Domurat Dreger's 2004 study of conjoined twins, One of Us, reviews first the nineteenth century fascination with the rare condition and then its medicalization in the twentieth century. Similarly, histories of polio and the treatment of persons paralyzed by it report a complex twentieth century story of difference and its construction that does not easily fit within the formulaic perspective offered here. 

  "Power–that is, its exercise," Tremain writes in her summary of Foucault's argument, "perpetually creates knowledge and knowledge constantly includes effects of power."  It is that presumed insight that informs a chapter by Martin Sullivan, "Subjected Bodies," about paraplegics in a rehabilitation ward. "I show how the medical power that circulates in a specific facility for the rehabilitation of spinal-cord-injured people is, in the first instance, directed at producing a certain type of body–a governable, and hence, productive body–and a certain type of subject-namely the paraplegic body-subject," Sullivan says.

Sullivan uses his understanding of Foucault to make sense of interviews with spinal chord injury patients aggrieved by both the nursing care they received and the attitude of physicians supervising that treatment: "Medical power was pervasive, patients had little, if any, meaning input into their rehabilitation regimes." One patient speaks for the general complaint when h/she (and why don't we know about the person?) said: "I was kept in the dark too much. I wanted to know what the future held in store. I feel the patients' rights … were crushed … I resented most of the attitudes that were shown by the trained staff."

The conclusion we are asked to draw is that, as the author puts it, "in this environment medical power was undermined, that it has lost its legitimacy." Power becomes a coercive thing in its own right."  Paraplegia and tetraplegia are coercive, limiting conditions. To assert "medical power" as the problem requires more. We need to hear from former patients who have been members of the rehabilitation program and are now independent members of the community, for example. We need as well interviews with the staff members criticized by the patients quoted by Sullivan. And, of course, it would be nice to see a recognition that a greater rehabilitation literature exists, one where these issues are considered. Without that the tale is not even half-told, the argument insubstantive.

One can contrast Sullivan's simplistic tale with Oliver Sacks's more complex story describing his own period of hospital treatment and rehabilitation following a severe propioceptive disorder (A Leg to Stand On, 1984). A young neurologist, Sacks was faced with a neurological condition following a severe physical trauma, a problem he understood intellectually but was experiencing personally. On his ward were the bossy nurses and the superior doctors but in the bed was a doctor totally unprepared for the reality he was experiencing. Sacks's careful handling of the skeins of the story present the complexity of issues of rehabilitation and treatment, and of the interpersonal relations that exist in care facilities. 

A similar complaint of simplicity can be lodged elsewhere in the volume. Scott Yates, for example, considers the lives of persons in care centers as if they existed in a vacuum: "I take the position, influenced by Foucault and discourse analysis, that what people say about their situations implicitly contains a particular picture of the social world to which they related". One does not need Foucault for that basic insight. One may need him to advance beyond it as an at best limited and unbalanced posture. Where are the interviews with family members whose relatives have found in the social institution a home the family did not provide? Where, again, is the perspective of the staff, both on the ward and in administration. Without these we have at best a quarter of the tale, an incomplete story whose legitimacy cannot be gainsaid by references to Foucault.

Perhaps the least satisfactory essay in this volume is one that was potentially most important: Bill Hughes's attempt to evaluate Foucault's ideas to disability theory. It begins with the unsubstantiated assertion, that "Disability studies in the United Kingdom has begun to grow out of the narrow theoretical approach that constrained its development in the early to middle 1990s". There is a wealth of data that would place the idea of disability studies at an earlier date. One can easily dispute the assertion those studies were grounded in a "narrow theoretical approach". The chapter ends with the similarly assertive declarative that: "Until one accepts a normative point of departure that valorizes the politics of disablement and the objectives of the disabled people's movement, disability activism is an absurd and futile exercise." It was precisely that valorization of the politics of disablement that substantiated the disability movement in Great Britain in the 1980s, if not earlier, a movement based upon the objectives of persons of difference. The result was neither absurd nor futile but in fact rich in its results.

For an entirely different perspective on these matters, Tom Shakespeare's 2006 Disability Rights and Wrongs is a useful antidote. Shakespeare was the poster boy of the British disability movement in the 1980s and much of the 1990s, one who argued strongly an absolute distinction between socially constructed disability and limitations imposed by physical difference. A lecturer in sociology, Shakespeare has been among the most visible figures in the British disability movement for more than a decade. Born with achondroplasia, his limited stature made him an exemplar for persons of difference, his professional prominence made the argument his writings asserted: physical difference is not necessarily a limit.

In recent years, Shakespeare has changed his perspective: "At one time I was a critical friend of the social model [defining disability], defending it against external attack," he writes. "I am now among those who argue that it should be abandoned." Not surprisingly, that transformation has angered members of the communities of difference that earlier advanced him as a proof of their argument. Strangely, the professional sociologist makes no reference in his book to Foucault despite the importance of Foucault's arguments to a range of social scientific perspectives.

The central insight that appears to have powered Shakespeare's change of position is that cognitive and physical differences may impose real performance limits and the failure to acknowledge that fact is a failure of the model of disability he formerly espoused. Shakespeare is clear that he values the advances made by activists over the last twenty years but unclear where his new perspective will lead.  For a scholar–Foucauldian or otherwise–Shakespeare's shifting position presents a rich skein in which issues of knowledge (personal and professional) and power (academic and public) are entwined. Both Shakespeare's formal knowledge (an academic!) and his avowal of a disability perspective (an achondroplasic!!) were transformed into positions of social power in academia and among the great public (the BBC, etc.). That power led to associations with those who questioned the model he espoused, his preface suggests, or at least argued a different point of view. Their arguments have led Shakespeare to see himself and disability in a new light.

Both volumes promise more than they deliver. Neither is definitive, or even very satisfactory in their treatment of the central question: When does difference become disability. How do we construct the mechanisms of enfranchisement and how do we encourage the marginalization, if not the termination, of classes distinguished by cognitive or physical difference? These are fundamental issues being considered across a range of clinical and social sciences. These two volumes, the Foucault reader and Shakespeare's argument, together provide no answers but instead attest to the difficulty of an honest presentation of the problems. They present no path to resolution but instead are testimonies to a general failure to confront the problem of difference in a society that values normalcy and the mundane.

Books cited.

Draeger, A. D. One of Us: Conjoined Twins and The Future of Normal. Harvard, MA: University of Harvard Press, 2006.

Sacks, O. A Leg to Stand On. NY: Harper and Row, 1984.

Shakespeare, T. Disability Rights and Wrongs. NY: Routledge, 2006.

Tremain, S. Foucault and the Government of Disability. Ann Arbor, MI: University of Michigan Press, 2007.

 

 

© 2007 Tom Koch

 

 

Tom Koch is the author of fourteen books and more than 100 articles (http://kochworks.com). He serves as a medical ethicist, medical historian, and gerontologist with appointments at both the University of British Columbia and Simon Fraser University. In addition, he maintains a private consultancy in bioethics and gerontology in Canada.

Categories: Ethics