Rethinking Disability: Principles for Professional and Social Change, Elizabeth DePoy and Stephen French Gilson. Belmont, CA: Brooks/Cole. 2004. Paperback, xiii + 182 pages, $41.95.

David Pfeiffer has died. Bob Stodden of the University of Hawaii's Center on Disability Studies reported that on the morning of December 18, he did not wake up.

Some Ragged Edge readers may not know who Pfeiffer was. A whole lot of the work of disability studies and disability rights happens in little knots of people outside the glare of celebrity, and none of us knows everyone. He worked in disability studies, using scholarship to advance the cause of justice.

When he was editor of Disability Studies Quarterly , he once discovered that DSQ files available on the web were not accessible to people using screenreaders. He apologized publicly and, rather than have the service be accessible to some but not all disabled users, took the whole thing down until it could be made right.

In his chapter of Rethinking Disability, which he co-edited, Pfeiffer describes the emerging paradigm of disability studies and discusses its implications:

• disability does not on its own justify professionals controlling people's lives;
• people without disabilities, or nondisabled people, must cease the practices and dismantle the structures which promote and sustain discrimination, curtailed lives, and barriers to full participation in society;
• for work to belong to disability studies it must be grounded in the paradigm he describes rather than, for example, medical or rehabilitation paradigms; and
• our differences must be preserved, not suppressed.

Although David Pfeiffer and I didn't have much of a relationship beyond a mutual knowledge that the other existed, I will miss him. I miss him already. He wrote the first disability studies articles I stumbled upon, back when I couldn't even figure out how to contact the disability rights community. He was always helpful to me when, in the course of trying to educate myself on disability, I asked him for anything. And on the one or two occasions when I met him I found that I enjoyed him immediately, which is rare for me.

Pfeiffer took justice seriously, wrote clearly and forcefully, and was not afraid to take unpopular positions. These are traits I would like to think I cultivate in myself -- and so he was, and remains, a role model for me.

With Megan Conway and Steve Brown, Pfeiffer had recently founded a new disability studies journal, the Review of Disability Studies, whose first issue is due out in mid-January. (Issues will be available on the web -- at first for free, later to paid subscribers -- at http://www.rds.hawaii.edu.)

Pfeiffer and co-editors Patrick Devlieger and Frank Rusch dedicated their book Rethinking Disability -- a book that seeks to help drive disability studies forward -- to the memory of Irving Kenneth Zola .

I never knew Zola. He'd died by the time I was clued in enough to even know how to participate in any forum he might have been in, and to this day the only work of his that I've read is Missing Pieces .

But as I think about my reactions to the news of Pfeiffer's death, I think I understand what a loss Zola's death must have been to people working in independent living, disability studies, and disability rights, including me -- even if I have not known enough to feel that loss myself.

Losing Pfeiffer is like that, I think: his life and work strengthened the community, and even though we continue to benefit from and build on that life -- and even though large portions of the community may not know his name -- his death diminishes us.

I miss him.

The fact that two disability studies books titled Rethinking Disability have been published so close together (I heard about them within a day or two of each other) tells us something: we're in a period in which disability studies scholars are pushing for new developments.

It's an exciting time to be thinking about disability studies.

Much of my own reading in disability studies has been in the British tradition, partly because I've found it easier and partly because the British social model crowd is developing theory that is clearly useful to the pursuit of justice.

But these two texts are produced by people in North America and Continental Europe, and drawi on a much broader background. They don't ignore the British social model work, but that's not the tradition from which this work springs.

Patrick Devlieger, Frank Rusch, and David Pfeiffer call explicitly for a broadly inclusive disability studies that is multidisciplinary, that draws on the ideas of everyone who has direct experience with disability, and that does not replace, but rather incorporates, earlier approaches.

Elizabeth DePoy and Stephen French Gilson have one of the broadest bibliographies I've seen. Every time I went to check whether a particular writer was represented, he or she was. (The fourth work in the bibliography is one from ADAPT.) Every time they brought up a work that I know at all, I agreed with their characterization of that work.

There are times when theory seems sterile, at best unhelpful and at worst irrelevant to those people working outside academia. These two books, however, show something else entirely, and wholly aside from their individual merits I find that thrilling.

The target audience for Devlieger, Rusch, and Pfeiffer's book Rethinking Disability is people who write syllabi and I think only secondarily the students who might be assigned to read it, despite the key sentences in bold type and review questions following each chapter.

Some textbooks seem to me to be prepared with an eye to making a course, or a range of courses, easy to teach. But not this one. Others may have major flaws as textbooks, but make sense when viewed as a sort of extended seduction aimed at the teaching staff and perhaps a few motivated students. Devlieger, Rusch, and Pfeiffer's book is in this category.

The editors haven't collected a set of key essays that reflect the canon of disability studies. To the extent that any such thing could be done, I think it would have to be in multiple volumes. Depending on how I carve things up on any given day I've got at least five different disability studies genres on my shelves, and that doesn't even take into consideration the other disciplines from which disability studies scholars come or the work about disability that I wouldn't classify as disability studies at all.

They also haven't given a broad-but-shallow survey of the field or a major subsection of it, or a deep-but-narrow account of a more focused area. The text they've got is uneven in terms of breadth and depth, covers a pretty idiosyncratic set of topics, and includes papers that don't reflect a clear mastery of all of the subjects with which they deal. To build a syllabus around it for an introductory or mid-level class would require a lot of in-class discussion and some outside reading to supplement what's already here. And to adopt Rethinking Disability into an existing class would almost certainly require that it be only one of several assigned texts.

But since I don't regard it as a textbook so much as an extended seduction, a sort of fan dance of ideas, this doesn't bother me.

The editors, reflecting on traditions that have regarded disabled people as similar to or different from nondisabled people and other disabled people, encourage the reader to look at the tensions between sameness and difference, how they have played out, and how those tensions can be used to create a new (cultural) approach to disability that incorporates the best of what has come before it rather than scrapping it altogether.

If there are points at which some contributors seem to have mastered one tradition better than another, that's because they're crossing boundaries that are not crossed often enough.

And if there's more promised than delivered, that's only because, addressing themselves to those who are creating the tradition rather than to those who are expected to suck it up and then regurgitate it undigested onto an exam paper later, they are calling on us to make the delivery ourselves.

Elizabeth DePoy and Stephen French Gilson's book is also called Rethinking Disability ; this one isn't a textbook or even a seduction in textbook's clothing so much as a book explaining to others in the field (students or otherwise) one particular concept the authors have developed (and which is summed up as "Explanatory Legitimacy Theory," as they've named the theory) that underpins their different from, what they think is the significance of this concept, and how it can be used productively.

Figuring out how to discuss new ideas about disability without undermining what you say by dragging in the same old terms with the same old baggage isn't easy, but when it's done well (and DePoy and Gilson have pulled it off very well at some key points) the resulting language calls attention not only to the new ideas on display but to the old ideas that have been discarded.

So picking up the book involves a sort of down-the-rabbit-hole experience.

In these pages we don't encounter disabled people and nondisabled people , or people with and people without disabilities; instead we meet people whose observable behavior or reportable experience is atypical or typical . Then we watch as individuals and groups use value judgments to categorize themselves and others as disabled or nondisabled, and to create hierarchies of pedigree within the disability category. .

You or I may look at Christopher Reeve and think, "Quadriplegic, covered by the ADA," but DePoy and Gilson see, rather, a man who moves in atypical ways (on wheels, for one thing), spinal cord injury as the explanation for his atypical movement, and a judgment that people who've fallen off horses and subsequently become unable to move their limbs are legitimately disabled and deserve all those things that come with legitimate disability.

We don't encounter kinds of disabilty ; we find explanations for atypical behavior and the pedigrees for those explanations . We encounter diversity patina (observables of difference) and diversity depth (reportables of difference).

You may find diversity patina in my use of an augmentative communication device; I find diversity depth in the impossibility of speech.

The unfamiliar terms, where more familiar words and phrases might let us slip too easily out of rethinking and into old habits of thought, are a big part of what's great about this book, but it's also a big part of what's hard about reading it, and I wish that the authors had spent more time polishing their writing and the older ideas to make it easier to work through.

When the ideas mean a text has to be hard to grapple with, it should not be made any harder than it has to be, and I think this one, had it been edited with an eye to clarity and precision -- and had the glossary been expanded to include all the technical terms the authors thought were necessary to retain -- could have been much easier to read without sacrificing any of the theoretical insights.

Of course, in many fields, the theoretical innovators aren't the best writers; if I can only have one I'll take theoretical innovation over brilliant wordplay in a heartbeat, but that doesn't mean I don't sometimes resent having to choose.

DePoy and Gilson begin with the observation that people do things; they directly experience some of what they do, while third parties observe others. This is what the authors call description , although I suspect the word description points not to the doing of things but to the practice of making doings known. Experiences are reported by the person in question; and because we aren't all watching everybody all the time, observations are passed on by observers. When we start sharing reports and observations with one another, we describe .

Second, DePoy note that these observables and reportables are explained . The authors divide the explanations into constructed and medical-diagnostic categories. (I wish they'd gone with the terms "constructed" and the broader "realist" (rather than the term medical-diagnostic ), which would have included non-medical explanations like divine retribution, even if they're not current; but that's a point many in their intended audience may not worry about.)

Suppose you observe someone walking in an atypical way and you suspect she might be drunk. It's possible that after some investigation -- a breathalyzer or blood test -- you'll confirm that drunkenness is the explanation for the observed behavior. It's also possible that, with more information, you might conclude your initial explanation was wrong and that a better explanation is the consequences of having had meningitis.

The third part of the theory is legitimacy : DePoy and Gilson divide legitimacy into judgment and response . Value judgments are made about how people are observed to look and act, their reports of their experiences, the explanations that are offered for the observables and reportables, etc.

Even though many experts regard alcoholism as a disease, someone whose atypical walking is explained by alcoholism is likely to be treated differently from someone who walks in the same way but whose walking is explained by meningitis -- and someone who has been repeatedly picked up by police for walking after having had meningitis might be okay with the way the police treat people who repeatedly wander around while drunk, but not think they ought to treat her that way as well.

These values, DePoy and Gilson note, are very often overlooked, but are at the core of what they believe is new and helpful about their work. Responses are deemed appropriate or inappropriate by the people who have made the value judgments: if you request reasonable accommodation at your job, your employer's judgments about your claim of disability are going to matter.

But different individuals and groups may make different judgments and therefore regard different responses as legitimate. And focusing on official designations and general categories obscures the value judgments that lead to different responses for individuals and groups who are officially explained in similar terms.

At the start of the final chapter, DePoy and Gilson write that "Robin Kelley, a biographer of social activists, remind us to be critical for the sake of learning while keeping our vision of what should be," and while the application of their Explanatory Legitimacy Theory is apparently explored at greater length in their 2003 book Evaluation Practice , they do, in the final section of the book, provide some idea of how the theory can be used to limit the role of medical diagnosis in shaping professional and social responses to disabled people, and sketch out a rough idea of what a community in line with their principles would look like.

What shines through in this section, more than the details of the ideal community, is the fact that this isn't sterile theory. This is an attempt to use disability studies to make the world a better place -- which is, I submit, exactly how disability studies ought to be used.

There's a lot to like in the Devlieger, Rusch, and Pfeiffer text. Pfeiffer gives us his account of the disability studies paradigm; Patrick Devlieger traces the evolution of terms from idiot to person with mental retardation and the way that different values were reflected in each succeeding label; Frank Rusch, explores the evolution of the idea that "persons with disabilities were more like their peers without disabilities than they were different."

I'd think the book was worth bugging a library for just for these three pieces, and I almost wished the three editors had just written the whole thing themselves, but these are not the only strong chapters. In fact, the book is an almost unbroken string of treats, each worth savoring on its own before even considering how it might connect with the others.

Tensions between the broader disability movement and specific groups -- members of Deaf culture, aging people, and people with significant cognitive impairment -- are addressed by Susan Foster, Madelyn Iris, and Philip Ferguson respectively.

I found Ferguson's chapter particularly thought-provoking. He's addressed a couple of the issues I've been thinking about, especially his argument that the exclusion of people with cognitive impairments is at the root of the independent living movement and his assertion that "[c]ognitive disability is not the absence of self; it is the absence of other people."

Gerald Gold contributes a piece on virtual support groups, Venta Kabzems writes on special education and against full inclusion, and Henri-Jacques Stiker (a writer I've struggled with, but one who makes the struggle worthwhile) makes a case for "a dialectic between likeness and otherness."

Gary Albrecht, in a piece that's strikingly relevant to the DePoy and Gilson book, considers the effect cultural values have on disabled people in a society considered to be egalitarian. In it, he points out the ways that attitudes toward different disability subgroups vary (this is an aspect of what DePoy and Gilson call pedigree ), and sketches out some of the consequences of being considered to be a member of a devalued subgroup.

Yes, I can see how this text could be used to spur the development of new ideas and new approaches to disability, and despite having the look (and at moments the feel) of a lower-level textbook, I can imagine it being used most productively in an advanced seminar or out of the classroom completely as a start to producing the sort of interdisciplinary "crossover" work I wish more people were doing.

Carol Goldin delivers the memorial to Irving Kenneth Zola that both roots the work in this volume in the history and tradition of disability studies and provides, for those of us who are relative newcomers, a reminder of what we owe to those whose deaths have been such hard losses. On the day I learned of David Pfeiffer's death, it was a good piece to read again.

Posted Jan. 5, 2004

Cal Montgomery reads, thinks, writes and engages in other subversive activities in Chicago.

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