A Disabled Reader’s Tale

The frostbitten hand of Edward Leicester Atkinson, surgeon on Scott’s Terra Nova Expedition, 1910–13.

From time to time, we hope to include items by some of the leading scholars in the field. It gives us particular pleasure to launch the first of our guest blogs with this contribution by David H. Stam. David is best known as a distinguished scholar in the fields of bibliography and polar history. His career as a librarian took him to the Newberry Library, Johns Hopkins University, eventually as Andrew W. Mellon Director of the Research Libraries of The New York Public Library, and for several years the Librarian at Syracuse University. He is famously responsible for  An International Dictionary of Library Histories (2001) and is more recently the author, with the assistance of Deirdre C. Stam, of the excellent Adventures in Polar Reading (Grolier Club, 2019). He has also written a memoir, What Happened to Me (2014). In this article, he offers a personal take on reading in unusual circumstances. – BB

My old friend Bill Bell, who is responsible for this blog, is about to publish Crusoe’s Books, his long-awaited book on reading in extreme situations. I’ve been waiting to see this book for most of the 21st century, ever since the SHARP Annual Conference of 2001 in Williamsburg, VA, where we first met following his paper on the books of British explorer Robert Falcon Scott on his first expedition to Antarctica in 1901 aboard Discovery. We’ve been friends and reading partners ever since.

A lot has happened in the intervening twenty years. With my wife Deirdre’s collaboration our own work on reading in polar settings has been published by the Grolier Club: Adventures in Polar Reading: The Book Cultures of High Latitudes (New York: Grolier Club, 2019). By the coincidence of a large number of Polar centennials early in the century, interest in the so-called “Heroic Age” of Amundsen, Scott, Shackleton, and many others has mushroomed, both among the general public and specialists in all aspects of Polar history.

My own experience of reading was turned upside-down in late 2008 by a diagnosis of amyotrophic lateral sclerosis (ALS, known in Britain as motor neuron disease). A disease without a cure, symptoms are very variable among its patients, often including a significant loss of finger dexterity (sometimes ironically called digital dexterity). It was not long before my ability to button a shirt had all but disappeared, a phenomenon mentioned in King Lear where on his deathbed he pleads, “Pray Sir, undo this button.” It’s now our favourite line of the Bard who understands so much of life and its vicissitudes.

As far as I know the Americans with Disabilities Act does not deal with discrimination against disabled readers like me, nor do I intend to hire a lawyer to find out. For the record I want to provide a list of factors that affect me in reading the printed word in physical form. These conditions vary a great deal from patient to patient and there is no standard norm among various neurological diseases. This is a personal list, though I suspect several would be widely shared. Some of these problems could be avoided by an attentive publisher or printer, as fortunately happened with our recent book.

1. Weight: in this era of the mega-tome memoir, historical masterwork,  and exhaustive biography, weight is an obvious problem. I sometimes need some help in positioning a book for reading, usually with an aide resting the book on a pillow on my lap. None of my four devices for holding a book open work with a heavy book, and regular adjustment of legs, pillow, and book (for example, to turn pages) are a distraction, and often a danger to the page edges. One alternative is to place the volume on a flat surface at chest height and read standing up. That takes energy already at a premium and most heavy books in that position would need to be held open with two hands.

Contributing to the weight problem sometimes is the use of calendared paper, especially for glossy illustrated books. Apart from the weight, reflections on the page require constant adjustment of the page if not the whole volume.

2. Openability: I simplistically divide books into three categories: one, two, and three-fisted books. The first can lie flat, or open on a reading device, with ease of page turning. The pages remain open while taking notes by hand (if possible) or computer. In my case I have no legible handwriting, though I can still compose on a computer. The second requires two hands to hold the work open, though turning pages or taking notes is much more difficult. The third category is impossible for the disabled: typical these days is a tightly bound perfect binding with excessive glue and very narrow inner margins. On-demand publishers often err in this direction. Most desirable is Smythe sewing with adequate inner margins.

3. Footnotes vs endnotes: Endnotes in two and three-fisted books virtually are guaranteed to go unread. Imagine trying to move with the hands of a true klutz to the back of the book while holding it open with largely inoperative fingers. For me footnotes are preferable and needn’t be in a smaller font.

4. Margins: Some disabled readers retain handwriting ability. I don’t recommend they deface their books (or library books), but for those needing the convenience of annotations, wide inner margins are a boon.

5. Type size: For an octogenarian like me type size makes a great difference, though a small tightly spaced face will not deter me from reading. It is fortunately still possible, though I wonder if my impression is correct that university presses are increasingly moving toward more words per page. Perversely, the Times Literary Supplement has already made the move, a betrayal of Stanley Morison and Times New Roman.

6. Newspapers: For me a tabloid is much easier to manipulate than any of the hard copy alternatives. Online versions of the news are another matter, but old habits die hard. Newspapers. Literary journals like NYRB, LRB, and TLS are a good size, except when their inner margins (verso and recto) yield paper pressed over the type. Would that the publishers put all their advertisements there, however much their advertisers object.

7. Time: It might not be obvious from the complications listed above that almost everything with ALS takes more time, often more than twice as much: bathing, drying, dressing, eating, walking, exercising, writing, typing, sleeping itself, even reading. The assault on our reading ability is insidious: it distracts our attention, it destroys the rhythm of the prose (not to mention poetry), and involuntary sleep requires re-reading many passages in seeking the place to resume.

All that and old age does not terminate the addiction and we go on reading as long as we can. Mechanical aids keep advancing the ability to read, write, and communicate, even as the end of those abilities gradually arrives. My own hero is Tony Judt who wrote four or five significant books in the two or three years of his disease with the kind of help I can’t imagine. A reader and an amanuensis at a minimum. Among other things, it begins to get expensive. With considerable help I’ve been lucky enough to complete two full books in the thirteen years since diagnosis, and another since the probable onset twenty years ago.

Despite the trials outlined here, I have been extremely lucky in my encounter with ALS, having lived far longer than most fellow victims, and having the excellent care of the US Veterans Medical establishment. But I do wish that the world of publishing would accommodate some of the desiderata outlined here.

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