It must have been a Herculean task to compile these two volumes of Disability Experiences filled with memoirs, autobiographies, and other personal narratives stretching from 1470 to 2018. Many of the authors who were selected for Disability Experiences are or were based in the USA but the two volumes also contain work from authors, poets, social and natural scientists, philosophers, artists, novelists and many others from around the globe. The textual, cultural and political fabric of Disability Experiences is profoundly intersectional, highlighting the perplexities and complexities of living life as ‘the other’ over the centuries, drawing on unique, authentic circumstances such as Audrey Lorde’s well known Cancer Diaries, The Bells of Nagasaki (1949) by Takashi Nagai, and excerpts from Charles Darwin’s autobiography. Don’t Call Me Inspirational: A Disabled Feminist Talks Back (2013) by Harilyn Rousso shares a place in the same book as The Girl from Aleppo: Nujeen’s Escape from War to Freedom (2016) by Nujeen Mustafa, with Christine Lamb, the lived experiences of the horrors of war, the specifics of a certain cancer diagnosis and Darwin’s life could represent a starker contrast. Dating back to 1470 there are two stories about infirmity, “Grove of the Infirm” and “Wonder at the Works of God” by Teresa de Cartagena and in 1825, Thérèse-Adèle Husson offers Reflections: The Life and Writings of a Young Blind Woman in Post-Revolutionary France.
And yet, it works, and is strangely reminiscent of how good museums can leave us impressed and feeling enriched, sometimes undecided which exhibit to revisit, then suddenly drawn in by a splash of colour or a life-size replica of a dinosaur, all under the same roof, contextualising our own existence somehow.
As this body of work spans over centuries and dozens of genres, a brief explanation as to its organisation is in order:
The key concepts for each work are presented in sidebars, the specific disability or condition or other pertinent facts are also provided.
Neat, concise summaries introduce each chapter
Each chapter includes the author’s name, dates of birth and death where applicable, occupation, nationality, genre or academic discipline.
Very useful contexts are offered, and sometimes they are highly entertaining anecdotes, at other times informative titbits of all manner or sobering background data.
The table of contents includes work titles, original publication date, and authors, as well as a brief summary of each work.
An alternative table of contents lists the works by the name of their authors, in alphabetical order.
There is a disability, illness and medical conditions index, some conditions are doubly or trebly listed under different names, due to name changes over time or official World Health Organisation classifications, and sometimes due to illnesses being referred to differently in different countries.
Each entry is accompanied by further references as well as additional information. The intention is to make the volumes more accessible but also to help find alternative versions.
This body of work conveys a sense of belonging from which to take comfort. Yes, readers may say to themselves, there are many others that have been to dark places, too, and back. Yes, there are doubts and feelings of shame or inadequacy we can share with a 17th century writer.
A story entitled What Her Body Thought by Susan Griffin (Journey into the Shadows) caught my attention. Griffin deals with her own illness by acquainting herself with the literature of Marie Duplessis, a character in an Alexandre Dumas novel, in order to make sense of her own suddenly drastically changed reality. Fascinating from my point of view is the fact that Griffin expresses dismay at doctors’ insistence on bedrest, which goes to show that she was diagnosed in another societal and political paradigm because at the time of this review, patients are hounded out of their houses and into work by the authorities since the ideologically driven narrative of the benefit scrounger has taken root in the UK and other welfare states. Griffin, however, talks of other problems with the bedrest recommendation. She reflects on the economic losses of such medical advice, and while total rest is indeed the only way to avoid deterioration of health in the initial acute stages of her particular illness, the question of income is a pressing one in the crumbling welfare state and in healthcare systems in which patients, if unfortunate, are made to wait for months, sometimes years, for a correct diagnosis while expected to continue to work or else risk becoming destitute but also increasingly unwell. Griffin’s texts illustrate the risk of sliding into poverty and while medical advice (to her anyway) was sounder than it is these days, there was no economic recourse to make up for lost income, especially not in the USA. It is important to note that readers will be able to place each story in their geographical, political and cultural context thanks to the editors’ organisation of the chapters. Central to Griffin’s text is ‘To be a patient in the labyrinth of modern medicine is to become disenfranchised at an almost primal level. Regarding your own body, it will seem like almost any other opinion carries more weight than your own…’ (p. 816). She reflects on the paucity of terminology with which to accurately express what is happening to one’s body when so ill, which gives her narrative a chillingly authentic feel; there still are no words that can adequately describe and express pain and suffering to those unaffected. Griffin, as every other author in Disability Experiences, is represented through her own work in merely a short excerpt. What follows are the publishing processes and encounters with editors in chief, editors and co-authors, and other titbits of information in relation to every chosen narrative. It is perturbing yet, again, strangely comforting to learn that Griffin was asked by the publishers to change her narrative, find a new title, call it a spiritual journey to ‘instil hope in readers’, rather than being allowed to tie her experiences to concepts of democracy from a social and political perspective. Disability Experiences, while I cannot praise it enough, renders the surreal experiences of being disabled into an irrefutable fact, something almost written in stone, namely that disabled people are consigned to lives in which it is the ill person’s obligation to make nondisabled people feel better about themselves while disabled people’s agency is stripped off of them. The expected narrative arc with its almost obligatory happy ending has been demanded of so many of those wonderful authors so that publishers, the people in their lives and readers can stomach the contents on offer. Over the centuries disabled people have been expected to display dazzling personalities, magnanimous dispositions, play the village fool or entertain kings and little children with their otherness. Alternatively, they have been tasked with reassuring everyone of their unassailable positions and superiority. Metaphors, for example illness as a ‘journey’ filled with ‘positivity’ and ‘self-discovery’, is a century old trope. Towards what self-discovery ill and disabled people travel is not ever made quite clear. Readers meet Griffin through additional material, an interview conducted in 2018. Such unique contextualisation of an excerpt of the work of an author renders Disability Experiences truly precious. Concluding this review, I apologise for not doing the many scholarly chapters any justice, but it is a deeply impressive, beautiful treasure trove of narratives to which I will return often.
National Centre for Lifelong Learning, Jonkoping University, Sweden
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Correction Statement
This article has been republished with minor changes. These changes do not impact the academic content of the article.