‘I want to stare death in the eye’: why dying inspires so many writers and artists



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Claire Hooker, University of Sydney and Ian Kerridge, University of Sydney

This is one of our occasional Essays on Health. It’s a long read.


It may seem paradoxical, but dying can be a deeply creative process.

Public figures, authors, artists and journalists have long written about their experience of dying. But why do they do it and what do we gain?




Read more:
On poetry and pain


Many stories of dying are written to bring an issue or disease to public attention.

For instance, English editor and journalist Ruth Picardie’s description of terminal breast cancer, so poignantly described in Before I say Goodbye, drew attention to the impact of medical negligence, and particularly misdiagnosis, on patients and their families.

English editor and journalist Ruth Picardie’s description of terminal breast cancer drew attention to the impact of medical negligence and misdiagnosis.
Penguin Books

American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS in Days of Grace: A Memoir.

His autobiographical account brought public and political attention to the risks of blood transfusion (he acquired HIV from an infected blood transfusion following heart bypass surgery).

Other accounts of terminal illness lay bare how people navigate uncertainty and healthcare systems, as surgeon Paul Kalanithi did so beautifully in When Breath Becomes Air, his account of dying from lung cancer.

But, perhaps most commonly, for artists, poets, writers, musicians and journalists, dying can provide one last opportunity for creativity.

American writer and illustrator Maurice Sendak drew people he loved as they were dying; founder of psychoanalysis Sigmund Freud, while in great pain, refused pain medication so he could be lucid enough to think clearly about his dying; and author Christopher Hitchens wrote about dying from oesophageal cancer despite increasing symptoms:

I want to stare death in the eye.

Faced with terminal cancer, renowned neurologist Oliver Sacks wrote, if possible, more prolifically than before.

And Australian author Clive James found dying a mine of new material:

Few people read

Poetry any more but I still wish

To write its seedlings down, if only for the lull

Of gathering: no less a harvest season

For being the last time.




Read more:
Vale Clive James – a marvellous low voice whose gracious good humour let others shine


Research shows what dying artists have told us for centuries – creative self-expression is core to their sense of self. So, creativity has therapeutic and existential benefits for the dying and their grieving families.

Creativity provides a buffer against anxiety and negative emotions about death.

Cartoonist Miriam Engelberg chose a graphic novel to communicate her experience of cancer.
Harper Perennial

It may help us make sense of events and experiences, tragedy and misfortune, as a graphic novel did for cartoonist Miriam Engelberg in Cancer Made Me A Shallower Person, and as blogging and online writing does for so many.

Creativity may give voice to our experiences and provide some resilience as we face disintegration. It may also provide agency (an ability to act independently and make our own choices), and a sense of normality.

French doctor Benoit Burucoa wrote art in palliative care allows people to feel physical and emotional relief from dying, and:

[…] to be looked at again and again like someone alive (without which one feels dead before having disappeared).

A way of communicating to loved ones and the public

American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS.
Ballantine Books

When someone who is dying creates a work of art or writes a story, this can open up otherwise difficult conversations with people close to them.

But where these works become public, this conversation is also with those they do not know, whose only contact is through that person’s writing, poetry or art.

This public discourse is a means of living while dying, making connections with others, and ultimately, increasing the public’s “death literacy”.

In this way, our conversations about death become more normal, more accessible and much richer.

There is no evidence reading literary works about death and dying fosters rumination (an unhelpful way of dwelling on distressing thoughts) or other forms of psychological harm.

In fact, the evidence we have suggests the opposite is true. There is plenty of evidence for the positive impacts of both making and consuming art (of all kinds) at the end of life, and specifically surrounding palliative care.

Why do we buy these books?

Some people read narratives of dying to gain insight into this mysterious experience, and empathy for those amidst it. Some read it to rehearse their own journeys to come.

But these purpose-oriented explanations miss what is perhaps the most important and unique feature of literature – its delicate, multifaceted capacity to help us become what philosopher Martha Nussbaum described as:

[…] finely aware and richly responsible.

Literature can capture the tragedy in ordinary lives; its depictions of grief, anger and fear help us fine-tune what’s important to us; and it can show the value of a unique person across their whole life’s trajectory.

Not everyone can be creative towards the end

Not everyone, however, has the opportunity for creative self-expression at the end of life. In part, this is because increasingly we die in hospices, hospitals or nursing homes. These are often far removed from the resources, people and spaces that may inspire creative expression.

And in part it is because many people cannot communicate after a stroke or dementia diagnosis, or are delirious, so are incapable of “last wordswhen they die.




Read more:
What is palliative care? A patient’s journey through the system


Perhaps most obviously, it is also because most of us are not artists, musicians, writers, poets or philosophers. We will not come up with elegant prose in our final days and weeks, and lack the skill to paint inspiring or intensely beautiful pictures.

But this does not mean we cannot tell a story, using whatever genre we wish, that captures or at least provides a glimpse of our experience of dying – our fears, goals, hopes and preferences.

Clive James reminded us:

[…] there will still be epic poems, because every human life contains one. It comes out of nowhere and goes somewhere on its way to everywhere – which is nowhere all over again, but leaves a trail of memories. There won’t be many future poets who don’t dip their spoons into all that, even if nobody buys the book.The Conversation

Claire Hooker, Senior Lecturer and Coordinator, Health and Medical Humanities, University of Sydney and Ian Kerridge, Professor of Bioethics & Medicine, Sydney Health Ethics, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Tribute to biggest collection of artists’ books in the southern hemisphere



File 20190416 147518 9qwwua.jpg?ixlib=rb 1.1
‘Witkrans’ by Ena Carsten (1998), on exhibition at Wits Art Museum, 2019.
Charles Leonard

David Paton, University of Johannesburg

There is a very special section of artworks known as artists’ books. These are artworks in the form of books rather than books about art. South African art collector and philanthropist Jack Ginsberg began collecting in this field in the early 1970s. He recently donated this world-renowned collection – and the biggest in the southern hemisphere – to Wits Art Museum in Johannesburg. Part of the collection, which includes more than 3 000 artworks plus thousands of additional items related to the field of book arts, is on exhibition. The Conversation Africa’s Charles Leonard spoke to David Paton, co-curator of the exhibition.


How would you describe artists’ books?

Artists’ books are artworks in the form of books that explore and unpack their own material being; their bookness. In other words, artists’ books are self-conscious about their function, drawing attention to, as book artist and scholar Johanna Drucker states in The Century of Artists’ Books, the very conventions by which books normally efface their identity.

This reflexive awareness includes a book’s material, shape, structure and navigability. Thus, artists’ books are not sketchbooks, journals or portfolios and certainly not books about, or on, artists. Conventional notions of artists’ books usually include only objects that function as books and exclude sculptural objects, book-like objects, digital books and ephemera.

Give us a brief history of artists’ books.

The rise of artists’ books is a phenomenon of the 1960s and ‘70s in the US. It began with the democratic photographic multiples of Ed Ruscha such as Twentysix Gasoline Stations (1962) and Every Building on the Sunset Strip (1966).

Another maker of artists’ books at this time in Europe was German-Swiss conceptual artist Dieter Roth.

Before this, however, is a rich history of book arts which includes Livres d’Artistes which are fine, limited-edition books incorporating illustrations of famous texts or poems. An example is Henri Matisse’s etchings which accompany Poésies de Stéphane Mallarmé and published in 1932.

Before this are the Futurist and Russian Constructivist books by, for example, El Lissitzky and Ilia Zdanevich (Iliazd). Perhaps the most famous early artists’ book is Sonia Delaunay and Blaise Cendrars’s Prose du Transsibérien et de la Petite Jehanne de France (1913) considered by many to be the first example of simultaneity in art.

In South Africa, perhaps the earliest exemplars are Phil du Plessis’s Hulde Uit 1970, an irreverent addendum to the journal Wurm 12 (1970) and Walter Battiss’s Male Fook Book (begun in 1973).

Who is Jack Ginsberg?

Jack is an accountant by profession but is known for his philanthropic work and support of the arts in South Africa. His collection of artworks by Walter Battiss formed the majority of the 700 pieces on the exhibition “Walter Battiss: I Invented Myself” held at the Wits Art Museum in 2016.

Jack then donated the works to Wits Art Museum’s permanent holdings which now forms the nucleus of a major Battiss Archive. In 2017, a small portion of Jack’s internationally renowned collection of artists’ books was showcased at the “Booknesses: Artists’ Books from the Jack Ginsberg Collection
exhibition at the University of Johannesburg Art Gallery.

Despite this being only a small proportion of his collection, they constituted one of the largest exhibitions of artists’ books held globally. Jack is the director of The Ampersand Foundation a non-profit charitable trust. It supports residencies by South African artists and others working in the arts at the foundation’s apartment in New York.

The Foundation also supports local artists by buying their artworks and donating them to museums and galleries.

Describe the works he donated to Wits Art Museum?

Jack has been collecting artists’ books as well as books on the field, what he calls “the archive on artists’ books” since the 1970s. In 2014 he was one of 10 international collectors of artists’ books (and one of only three from outside of the US) invited to participate in Behind the Personal Library: Collectors Creating the Canon at the Centre for Book Art, New York.

The Wits Art Museum collection is the envy of private collectors, scholars, museums and academic collections globally. It consists of some of the cannon of international exemplars as well as contemporary work from North and South America, Europe, Russia and Asia, Australasia and Africa.

It is also the only collection of South African artists’ books anywhere in the world as Jack has, single-handedly, promoted and supported the book arts in this country. Books that Jack has donated to the Wits Art Museum include most of those mentioned in the “history of artists’ books”. It includes Kara Walker’s remarkable paper engineered Freedom, a Fable as well as books by African artists such as Atta Kwami and Marc Wonga Mancoba.

Jack’s extensive collection also comprises fascinating categories such as popular culture; fine bindings; presses and publishers; ephemera, theses and catalogues along with books with unusual materials (such as glass, cork and metal) and structures (such as pop-up and down and tunnel books).

What’s the significance of the donation?

Jack’s collection of artists’ books and, importantly, his archive, is considered by many to be one of the most comprehensive and accessible collections of materials devoted to the field of the book arts anywhere in the world. Together they constitute some 8 500 items donated to the university.

Making these items publicly available at Wits Art Museum as well as the opportunities for artists, designers and scholars to view and access these bookworks, objects and archival materials is an exciting, unique and timely gift to the South African art world.The Conversation

David Paton, Senior Lecturer in Visual Art, University of Johannesburg

This article is republished from The Conversation under a Creative Commons license. Read the original article.