Disability Experiences is an encyclopedic collection of life writing about illness and disability. The collection includes 200 entries, a few from the 15th, 18th and 19th centuries and from several countries and continents, though most selections are 20th and 21st centuries pieces from the US, Canada, and England. The collection's ambitious scope comprises both its strengths and limitations; the same could be said for its availability in print and digital platforms. There are both strengths and drawbacks of each medium.

Primary entries appear in alphabetical order by title of the original work. Each entry includes the title and author, a one-sentence descriptor, followed by a contextualizing essay written by a scholar. The scholarly essays include an Overview, Themes, Critical Response and Bibliography. Further contextualization is provided by A Key Facts summary set off in a light yellow text box with turquoise contrasting elements, a side bar of Key Concepts in the page margin, and sometimes another similarly colored text box providing related information. The actual extract from the life writing is typically quite short. In a few cases no original extract is included (just the essay about it), and in at least one instance the extract is not from the disabled writer at all, but from a Foreword to the original work written by a nondisabled authority.

The prefatory material includes a Table of Contents, a TOC by author, Publisher's Note Regarding Accessibility (for more on this, see below), Editors' Introduction, Preface by the publishers, Disability Experiences in the Classroom (which addresses audiences for this collection), Thematic Outline, and list of Contributors. The Thematic Outline lists selections based on "Disabilities and Conditions," much like a medical listing, such as a DSM. This is but one example of the slant of the volume toward a medical approach to disability. There is no overarching theoretical statement by the editors explaining the new disability studies or its approaches. Each scholar includes, or does not, a disability studies analysis of their subject. While there are many excellent critical essays (more on this later), at the broadest level of the collection, the meanings, history or debates about disability are not addressed.

The editors are well-known scholars of life writing and acknowledge in their Introduction that they gave preference in their selections to aesthetic qualities, and to representing a range of disabilities and voices along the axes of diversity; they further admit most selections are from the northern hemisphere. A small, but not negligible, number of entries do come from outside the global north, and viewpoints are further marked by the differences of the global south, when the articles are by contributors who themselves come from the global south, or who endeavor to represent viewpoints that might be pertinent to those contexts, conditions, and criticalities of disabled life in the majority of the world rarely discussed in the disabilities studies research from the global north. While this collection does aim, then, at reaching a global audience (since this publisher has significant presence around the world and disability studies has permeated most of the countries on this planet), the Anglo-American bias predominates.

The collection succeeds in its goals of including diverse voices and disabilities not frequently represented. There are selections from writers outside the US––to name a few examples, from India, Ireland, Iran, Mexico, South Africa, Germany, Syria, Switzerland, Spain, Brazil, the First Nations of Canada. There are an exemplary number of slave narratives and narratives by indigenous people; several pieces on mental illness, including graphic memoirs of bipolar disorder; a number of pieces on intellectual disability, autism, Down's syndrome, and chronic pain. Oddly, though, some memoirs by well-known disability studies activists and scholars are not included.

The editors have done a good job in regard to selecting contributing scholars. The critical essays accompanying each entry generally are strong, and some are small gems of disability studies scholarship, placing the selection clearly within a disability studies critical framework—e.g. the Autobiography of James L. Smith with a superb overview and critical context provided by Delia D. Steverson. She notes that in the 19th century, "Racist ideology was successful largely because it was based on the conceptualization of the body through disability rhetoric, which labeled black bodies as inherently defective and therefore inferior" (36). Steverson concludes by citing scholar Jenifer Barclay, who argues for "the importance of recognizing the presence of disability among enslaved people" as a key way to mapping the "intersections between race, gender and disability in the nineteenth century" (1: 38).

Now if a reader were to use the Index to look up Steverson, she would be out of luck. There is no entry under her name. These types of omissions occur too frequently, making the print Index woefully inadequate for quickly locating information, though it does offer advantages of browsing by quickly thumbing through the pages.

A fully searchable digital version alleviates some of this problem. The digital Index is the same as the print one, but using the Search function and entering the name "Steverson" does take a reader to the entry for Autobiography of James L Smith and to Steverson's essay.

We cannot stress enough how important a smoothly functioning digital platform is to an encyclopedia of disability narratives, likely intended for a global and medically oriented audience. This collection, for example, would be germane for use in medical schools, nursing schools, and narrative medicine and medical humanities courses, as well as for a student or instructor in a disability studies course.

How smoothly does the digital version operate? In general, the online version of the book is like a website where you have a great deal of freedom to jump around among various entries. The subject links work well, helping one to find thematically related entries, but the execution of these features is far from flawless.

The print version could benefit from a cross listing feature, such as see also that sends a reader to related material—for example, for the different views on Facilitated Communication that are mentioned in different entries. The digital version does have the cross linking feature by theme in the online HTML version (not the PDF or MP3 versions) although the links don't always go to the correct entry.

Another inconsistency with the digital version concerns alternative text (alt text) descriptions of pictures for blind or low vision readers. Some captions for images have no meaningful information, merely identifying the picture, not describing it. Some titles are missing, and some images are without labels or alternative text.

The special features presented in the text boxes create different problems of their own. They are not accurately tagged for a screen reader, so the text from them is read in all sorts of ways—sometimes fragmented in between other text segments and in other articles in between bibliographies.

Accordingly, the publisher's claim that Disability Experiences meets WCAG 2.0 A or AA standards is not entirely tenable. There are major accessibility failures—lack of systematic tagging of PDF files for screen readers; missing or absent meaningful alternative text descriptions for images; text boxes not following a specific order with the result that their content ends up anywhere in the remediated files; squished font when a PDF is opened in Adobe Acrobat Reader DC 19.012. 1 Some readers with low vision might find the contrast colors—yellow and turquoise— helpful but many of these readers and those with intellectual disabilities also use a screen reader, or Kurzweil 3000 (a version of Kurzweil 1000 reader especially designed for sighted users with reading and writing disabilities) will find the e-book hard to use because of the same problems that makes this e-book difficult to use for blind readers.

The publisher's interest in accessibility is laudable. They are on the right track, but only half way there. We wonder if the publisher involved a trained accessibility expert in the production of this book and if the production staff conducted accessibility testing with a screen reader. Since a collection of life writing about disability will continue to grow, and is especially valuable for health professionals to read, we hope there will be future expansions of Disability Experiences, and that its accessibility will be improved through participatory design with a disabled expert user.

Footnote

  1. Sushil K. Oswal offers a comprehensive study of similar screen reader accessibility problems in over 2,000 PDF documents from several digital library databases in "Access to Digital Library Databases in Higher Education: Design Problems and Infrastructural Gaps." Work: A Journal of Prevention, Assessment & Rehabilitation 48.3 (2014) pp. 307-317. https://doi.org/10.3233/WOR-131791
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Copyright (c) 2020 Sushil K. Oswal, Cynthia Lewiecki-Wilson

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Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site; Volume 20, no. 4 through the present can be found on this site under Archives.

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ISSN: 2159-8371 (Online); 1041-5718 (Print)