You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our site.

Disability

Art review: chronic conditions and the digital age

9 Nov, 16 | by cquigley

Changing Lanes: Art in long term conditions in the digital age – new ways to adapt

By Shanali Perera

Rheumatic and musculoskeletal diseases are the largest growing burden of long term disability in the UK, affecting over 10 million adults. The concept of empowering patients to better engage with self-management of their long-term conditions is changing the world at an ever-increasing pace. Incorporating creativity can enhance interpersonal well-being.

slide03

Through my artwork, I aim to reflect my personal experience to raise awareness on ‘Creative empowerment – exploring the healing power of art’. Personal insights as a medic and a patient into integrating creativity, healing & health on the use of creative expression as a tool to face some of the physical limitations & challenges imposed by chronic illnesses. I am keen to tell others of my experiences as they may benefit from incorporating art or similar creative expressions into their own healing. Why not challenge illness dominance? I do so by using digital art.

I am currently a patient under the care of Rheumatology services at the Manchester Royal Infirmary, treated for vasculitis. I used digital applications for artwork to cope with pain, illness experience, adjust to living with vasculitis; to communicate with health providers, family and friends. Prior to ill health retirement, I was a Rheumatology specialist trainee and this journey has indeed been a transformative experience both personally and professionally.

slide2-copy

Copyright © 2016 Shanali Perera

Eight years of numerous A&E and hospital admissions, multiple consultations from various disciplines have given me some valuable insights into a patient’s journey. Chronic diseases can turn one’s life upside down, gradually changing the landscape of daily living. Art can be a refuge for coping with the dynamic shifts in daily routine – accepting role limitations, altering perceptions and regaining some level of control. Creativity gives something to take control of and construct a positive identity. I like to highlight the potential benefits I felt by facilitating self-expression through creativity. Art was a tool for positive reinforcement and reflective thinking for me. I found expression through Art not only represents symbolic aspects of coping but also demonstrates the many facets of emotions and degrees of pain I feel at various points, as a visual narrative. This form of non-verbal communication is effective in helping family, friends and health team gain new insights into often under estimated, emotional/spiritual elements factored into the illness experience. Seeing beyond the illness – creative expression helping to redefine self-identity. I managed to achieve a semblance of normality by starting to set more realistic goals and standards for me around my limitations. From my experience, adapting to find ways around limitations plays a key role in rebuilding confidence and progressing forward. I feel that accepting the shift in roles, reshaping and reinventing one’s self is an essential part to living with a long-term illness.

slide09

People with certain disorders not only have to deal with the general disability of the chronic illness, but also the physical limitation of expressing the “art” that is in their mind. On repeated use my hands become numb and painful, pain radiating to my shoulders. I found the use of digital medium my adaptation as it enabled me to use light touch with minimal effort and alternate hands. Less pain and fatigue became apparent in my hands and arms compared to using a paintbrush on canvas or charcoal on paper. For me, artistic expression was a means of self-exploration to convey how I was feeling. This really helped me to keep the fun side alive and regain a degree of control. This newfound freedom to explore myself through the world of colours and inner creative space, gave rise to my present work.

slide1-copy

Copyright © 2016 Shanali Perera

slide1

Copyright © 2016 Shanali Perera

I think art certainly can be used to explore and represent one’s individual journey -The way chronic illnesses are constantly changing shape, defining and re-defining itself. I feel that this aspect to self-care isn’t advocated to its full potential in people with long-term physical illnesses. There is a lot of scope to develop this further as a holistic approach to care given the wealth of studies illustrating the beneficial effects of integrating creativity and healing in long-term conditions. Present day represents the Digital age where Digital technology in healthcare is continually changing the world at anever-increasing pace. The use of digital medium/applications for creativity, especially for people with limited functional capacity/pain can be a constructive as well as an enjoyable pursuit to explore one’s creative side to cope with day-to-day struggles. Why not put this into wider use in the context of self-management of chronic illness? Let’s take a closer look at our creative space.

Be Visible! Be Heard! See yourself through art.

Correspondence to:

shanaliperera@gmail.com

Book review – A Body, Undone: Living On After Great Pain

3 Nov, 16 | by cquigley

crosby-front

 

Christina Crosby, A Body, Undone: Living On After Great Pain. NYU Press, 2016.

Reviewed by Ayesha Ahmad

 

There is a paradox in Professor Christina Crosby’s biography A Body, Undone: Living On After Great Pain–the paralysis that constrained her body so suddenly seems to have freed the language that we all possess and contain but which is generally consigned to a particular place in space and time.

Details about Crosby’s accident are astute, acute, and actual—there is no reflection, reliving or ruminating. The scene shared is that of Crosby on a cycling ride. Three miles into the 17 mile bicycle ride that was woven into a larger tapestry of 1000 miles to commemorate her 50th birthday, the fateful accident occurred. The journey stopped being a physical endeavour, instead reaching plateaus and crevices that became Crosby’s new lived experience.

The book requires the reader to become a traveller. We must leave the comfort of our previously held thoughts and beliefs. We must accept that we can no longer look behind at our past. We must embrace the fact that we are now in a new territory. We need new concepts, new identities and new sensations to experience the life that we are continue to breathe. We know that we are living in a new dimension—a different time and space to where we once walked and talked and wrote and sang, and celebrated our stories. As Crosby writes:

“Your body has and is a history” (p. 50)

This history becomes a vacuum. Crosby’s accident shows the fragility of life, and also reveals how our lives can be filled endlessly with triumphs and tragedies, and that these events can happen in any order, at any time, and at any cost. This is the vulnerability of our lives that Crosby sees as signifying our incompleteness. The way we treat our vulnerability, then, is a marker of how we find our completeness.

A Body, Undone spoke to me. Crosby’s resonated with me as her words created echoes and magnified the dusty corners where I have been living within myself. Her words helped me to regain a sense of living. I experienced a transcendence while reading the book. A Body, Undone is not a book about paralysis, about the loss of feeling, the inability to feel physical pain. Instead, it is about the body transformed. As is clearly evident throughout the narrative, it is Crosby’s masterful skill of language that navigated this transformation. Her voice resonates in the observation that:

“We speak of being in a body, as though the self were somehow contained inside a bodily exterior” (p. 50).

The body became “undone”, yet language became complete as Crosby discovered, through the paradox of the paralysis of the body, what it means to truly experience the vulnerability of being human. She takes us to the chasm of our essence.

Finally, I present the following, a nuance on the binaries we are forced into during life. Crosby writes:

“I’m afraid I’ll stop grieving and equally afraid that I’ll never stop grieving. If I do stop grieving, I will necessarily have come to terms with my profoundly changed body and my profoundly changed life, for I can leave off mourning only by no longer cherishing and burnishing my memories of the past” (p.197).

Crosby’s book gives us a gift—that of freedom, freedom to traverse the limitations we set forth for ourselves and to use our story to become whoever we are or wish to be.

 

Art Review: Visions of Multiple Sclerosis

28 Oct, 16 | by cquigley

 

Hannah Laycocks’s Visions of Multiple Sclerosis: Perceiving Identity

Reviewed by Shahd Alshammari, PhD.

 

When artists’ work is considered provocative, you usually think that their choice of subject is taboo. While certainly not “taboo”, the disabled body, and even more interestingly the “invisible disabled body”, in itself a paradox, is a subject that medical practitioners and society continue to struggle with. What happens to the sense of ‘self’ when the body attacks the self, essentially its own being? Hannah Laycock’s photography exhibitions ‘Perceiving Identity’ and ‘Awakenings’ launched in 2015, both  exploring the disabled body and identity.

Laycock’s work is contemporary in its subject and form, while at the same time being rooted in her own personal experience with Multiple Sclerosis (MS). Like Hannah, I have similarly struggled with MS. Many times during the day, I tell my body to behave. I say it out loud. I talk to my body, telling her to wake up. With MS, the Central Nervous System – to some extent the mind – attacks the body. Disconnected, alienated from the body, there is a breakdown of communication. The body must wake up. That is my understanding of the title of the exhibition ‘Awakenings.’ I root it in a very subjective experience, while simultaneously recognizing the work’s significance in urging society to wake up, to open its eyes to “other” ways of living and being.

‘Perceiving Identity’, titled in the same thematic way that ‘Awakenings’ is, raises a central question of interest to Disability Scholars, namely identity. I have called MS, a ‘Random Disease’ in the past, one that changes one’s life course, though not necessarily affecting mortality. In one of the photographs (Figure 1), Laycock captures a simple shot of a road. Uncomplicated, it is a road that is not paved with stones, holes or obstacles. It is what it is. In fact, the colors on the road seem to resemble the light of rainbow colors. My own vision understands the colors as orange, green, and yellow. The choice of colors symbolizes the wide array of MS identities, and MS symptoms (no two individuals have the same symptoms; the course of the disease differs from one person to another). Color blends onto the road, and sometimes, since vision can be affected in MS patients, this is not always a pleasant experience. It becomes difficult to differentiate between spaces. Other questions that chronically ill patients have voiced or left unvoiced, suppressed, include “where will my life go from here?” The road is the map, the new map that you are handed along with the diagnosis. This is the path, as unknown and random as it is.

%ef%a3%a9-hl_2014_08_20150129-tif

Figure 1. Copyright Hannah Laycock

 

Figure 2 is raw in its positioning of the artist at the forefront, as we are visually forced to focus on her back, on which she dangles what seems to be redcurrants, tracing her spine.

%ef%a3%a9-hl_2014_12_20150129

Figure 2. Copyright Hannah Laycock

The spine of course is affected in MS, as well as the brain. The redcurrant lands in its vibrancy along Laycock’s flesh, a strong contrast between the redness of the fruit and the artist’s skin. Redcurrants are supposedly beneficial in terms of a healthy immune system, efficient nerve transmission signalling, protection from free radical damage, amongst other potential effects.” Whether this is actually proven to help MS is not the point. It is yet another attempt at rebuilding a central nervous system that has chosen to break up with its significant other – the self, one’s identity. The artist holds the redcurrant in place, exhibiting control of her body, an attempt at the very least to alter the course of the disease, to do one’s part, to eat healthy, to be vigilant in fighting the disease.

All of the photographs that Laycock has beautifully presented share this theme of disconnection, of a breakdown of what is essentially communication between the mind and the body. As a Disability Studies scholar and someone who sees through the difficulty, and randomness, of living with this undefinable and uncanny disease (uncanny because it is unhomely, it is a body that used to house me just fine), I can say that Laycock’s work is bold and does not attempt to rectify or beautify or inspire. It recognizes the unpredictability and confusion of the disease, both for the patient and for medical practitioners. Nobody has answers, as frustrating as it is. Laycock’s work tells a fragmented narrative, part of the fragmentation of MS, of living with this disease, and seems to force you into her lived experience, rather than just standing along the sidelines, using diagnostic words, and labeling MS as ‘degenerative.’ The photographs carry a sense of closeness and intimacy. As viewers we are almost forced to stop and think about the literal and figurative meanings in Laycock’s artistic vision. Each photograph encourages us to pause and to ask “what is going on?”

And that question in itself is a repeated and dominant one in the lives of MS patients and neurologists attempting to diagnose and cure MS.

Hannah Laycock’s work can be viewed here: http://www.hannahlaycock.com/Portfolio/Perceiving-Identity.aspx

 

Related reading

Devan Stahl, Darian Goldin Stahl. Seeing illness in art and medicine: a patient and printmaker collaboration. Med Humanities 2016;42:3 155159.

Book Review: Keywords for Disability Studies

2 Aug, 16 | by cquigley

Keywords

Keywords for Disability Studies. Edited by Rachel Adams, Benjamin Reiss and David Serlin. New York University Press, 2015.

 

Reviewed by Kathryn Lafferty, PhD student in Comparative Humanities, University of Louisville

 

Disability studies as a field has extended into many areas of scholarship, from literature to sociology, gaining much attention as it grew out of the activism of the 1960s and 1970s. Since then, scholars have made a distinction between the “medical model” of disability, which focuses on individual deficiencies that need to be cured, and the “social model” of disability that puts emphasis on the physical and social environments that impact the individual, such as stigmatization of the disabled.

Keywords for Disability Studies, edited by Rachel Adams, Benjamin Reiss, and David Serlin, provides sixty-two significant concepts within the field of disability studies, covering topics from “ability” to “vulnerability” from a social model perspective. This comprehensive overview of the major concepts within disability studies is a well-organized and detailed array of essays from over sixty different authors, many of whom are notable scholars in the field. Keywords for Disability Studies is an excellent addition to the most recent scholarship and offers both scholars and students an in-depth look at some of the core concepts that drive disability studies as a field. The language throughout the book is easily accessible for scholars and students at all levels, concepts and theories explained in detail, making this an ideal text for someone new to disability studies. It is also an equally beneficial text for those already familiar with the field. Although there is not always cross-over between the essays, the text was undoubtedly crafted as a cohesive unit as the essays complement each other. With over twenty pages of cited material, this text is also useful as a reference guide for further scholarship on disability studies. In addition, the structure of the text is creatively designed, a welcome change from the more “traditional” chaptered format.

The book is not necessarily meant to be read cover-to-cover, but can be used more as a conceptual reference. Focusing on one essay at a time provides the reader with an in-depth view of a concept within disability studies and not simply an account of events or a brief definition of the term. All sixty essays are relatively short, each between two and four pages in length. This style is modeled from Raymond Williams’ Keywords: A Vocabulary of Culture and Society (1976).

The introduction, written by all three editors, is brief but provides an overview of what disability studies is and how it has evolved over time. The authors state that “the goal in designing this volume was not simply to define terms but to use them to delineate the field’s debates and problems, while also establishing their importance to many other areas of inquiry across disciplines” (3). A truly interdisciplinary work, this text provides the reader with various viewpoints and ways of addressing disability throughout many fields, with the authors asserting that “disability has become a remarkably heterogeneous category” (3).

Contributing authors include scholars such as Lennard J. Davis, Rosemarie Garland-Thomson, Michael Bérubé, and Robert McRuer. With such a wide variety of concepts, the text could have become overwhelming, but Keywords for Disability Studies breaks down and refocuses many concepts that scholars might already be familiar with into easily-understood and tangible notions. Some authors provide helpful background information on various concepts, others apply them to specific case studies, with all contributors offering useful ways to rethink disability.

The first essay, written by the editors, focuses on the keyword “disability”, demonstrating how the concept has changed throughout history and that it “is more fluid than most other forms of identity in that it can potentially happen to anyone at any time” (5). The authors conclude, “the meanings of disability and the words we use to describe its various manifestations will no doubt undergo profound shifts as a category of identity; a social, legal, and medical designation; and an embodied condition” (11). Adams, Reiss, and Serlin provide a valuable introduction and essay, and although they state that disability “is more fluid” than other identities, they are still able to define it and discuss it as a coherent concept.

Another entry that was especially effective, and one that builds to some extent on the earlier “disability” essay, is Lennard J. Davis’ piece on “diversity”. Davis is quick to argue that disability is omitted from conversations on diversity, and explores this “structural” problem. He asserts that “diversity as an ideological paradigm is structurally related to the goals of neoliberalism” (63), and as a result “diversity must never be allowed to undermine the basic tenets of free choice and the screen of empowerment that conceals the lack of choice and the powerlessness of most people” (63-4). Davis acknowledges that disability studies attempt to classify disability as a “real identity” and many of the essays included in this text argue from a similar viewpoint, noting the troublesome path in achieving this classification.

Keywords for Disability Studies also has resources on a separate webpage with suggestions on how to incorporate the essays into a classroom setting. Not only would this be helpful for those planning to teach disability studies, but it also has the potential to lend a refreshing approach to nearly any text read in a classroom setting, regardless of content. Keywords for Disability Studies is also helpful for scholars who plan to focus on disability studies or diversity more broadly, as there are many concepts which cross over into other disciplines.

In summary, the entries, which do not have to be read in any particular order, are a brief but comprehensive take on some of the concepts found within disability studies. Coherent, direct, and informative, Keywords for Disability Studies will undoubtedly generate questions and provide valuable resources for students and scholars alike in nearly any discipline for the foreseeable future.

 

Related reading

Rebecca Green. Disability and narrative: new directions for medicine and the medical humanities. Med Humanities 2010;36:7074.

Rebecca Green. Who speaks for whom? Health humanities and the ethics of representation. Med Humanities 2015;41:7780

Film Review: Notes on Blindness

13 Jul, 16 | by cquigley

notes-on-blindness-01

Image courtesy of Curzon Artificial Eye

 

Seeing blindness in the eye:

Film review of Notes on Blindness, UK, 2016, directed by Peter Middleton and James Pinney

Currently in UK cinemas

Review by: Dr Khalid Ali, Screening room editor

Literary work exploring visual impairment and blindness has always been rewarded by great critical reception–All the light we cannot see winning the Pulitzer Prize in 2015 (https://en.wikipedia.org/wiki/All_the_Light_We_Cannot_See), and Blindness by Jose Saramago (https://en.wikipedia.org/wiki/Blindness_(novel) rewarding its writer with the Nobel Prize in Literature in 1998.

Documenting his experience with visual impairment, the late Emeritus Professor of Religious Education, John Hull (1935-2015) used audio-recordings since 1980, the year he lost his eyesight, to document what it means to be blind. His autobiographical recordings were published in the book Touching the rock: An experience of blindness in 1990. The film Notes on Blindness uses those recordings lip-synched by professional actors to recreate John Hull’s experience in one of the most poignant films to date in 2016. Through John’s words–‘I am concerned to understand blindness, to seek its meaning to retain the fullness of my humanity’–we hear him question eloquently the nature, perception, and impact of sensory deficits. Through his journey into understanding his ‘deep blind world’, the audience is invited to appreciate the significance of the little pleasures of life, such as the sound and smell of rain drops, and the touch of a newly born child. Using poetic references to children’s fairy tales, John Hull identifies with the blind Prince in Rapunzel, and wonders whether his tears will bring  sight back to his eyes.

John’s reflections on blindness present several themes for discussion, including mindfulness, hope, self-management in disability, identity, and family bonds. These themes are illustrated using a stunning collage of visual imagery, and a beautiful score that touches the audience’s heart and mind.

In spite of the film’s dream-like contemplation on life’s little miracles and wonders, Notes on Blindness effectively manages to portray the harsh realities of disability and the suffering endured by John and his family. His young son cannot understand what it means for his father to be blind; his mother is frustrated by having to connect with his new ‘self’, and the agony of missing his children’s smiles at Christmas. The fascinating depiction of a blind world of ‘isolation, and separation’ that drowns its sufferer in a huge flood is one of the most imaginative and moving scenes I have seen in film.

Notes on Blindness reminded me of the eminent Egyptian writer and educationalist Taha Hussein (1889-1973) who fought blindness from the age of 3 years to become the Dean of Arabic Literature (https://en.wikipedia.org/wiki/Taha_Hussein). Both John Hull and Taha Hussein had strong-willed wives who provided unconditional love and incredible support to their husbands to continue their respective academic pursuits.

Liberation comes in the form of knowledge and understanding, in acknowledging that it is futile not to accept facts and reality, and the realisation that ‘surrendering is death’. Using familiarity, predictability, finding one’s own territories, resilience and determination, along with inviting students into his world of theology, John regains control of his personal and professional life.

A great message that the film presents is the fact that ‘medicine as we know it’ cannot provide the answer to everything; the power of faith and spirituality are key to well-being and peace in humans. ‘Faith is a shield against the ups and downs of human life’.

‘Coming to terms with disability’ is an understatement in terms of describing Notes on Blindness. The film is an exciting journey into the world of a ‘pioneer thinker’ who ultimately ‘saw blindness’ as a gift to understand his world and the world around him. In 2003, John Hull was awarded the ‘Global love of life’ award for his international contribution to disability.

 

 

Address for correspondence: Khalid.ali@bsuh.nhs.uk

Recommended reading and listening

  1. The possibilities are endless- film review, http://blogs.bmj.com/medical-humanities/2014/10/27/dr-khalid-ali-stroke-music-and-love-a-review-of-the-possibilities-are-endless-film-5/
  2. https://soundcloud.com/bmjpodcasts/bringing-cinema-to-those-with-visual-impairment-reporting-from-the-panorama-of-the-european-film

The Annual Sowerby Lecture in Philosophy and Medicine

26 Nov, 15 | by cquigley

 

“If I had to live like you, I think I’d kill myself”: Explaining the Disability Paradox

Havi Carel, Professor of Philosophy and Head of Subject, University of Bristol

Comment: Brian Hurwitz, Professor of Medicine and the Arts, King’s College London

 

Thursday, November 26, 2015.

18.30-20.00

Guy’s Campus, New Hunts House, Theatre 1

 

Free, no booking is required

 

Abstract:

“The ‘disability paradox’ identifies a significant difference in how ill and disabled people rate their wellbeing, compared with healthy people asked to imagine how happy they would be if they were unwell. Ill and disabled people’s wellbeing rating is only slightly lower than that of healthy people. However, healthy people rate their hypothetical wellbeing as much lower when asked to imagine themselves as ‘hypothetical patients’. There are three possible explanations: either patients misreport their wellbeing due to adaptation, or healthy people mis-imagine ill-health, or both.

In this paper I examine these explanations and suggest that it is healthy people who misimagine ill-health. I also claim that it is impossible to claim that ill people are misreporting their wellbeing due to adaptaion without this having general consequences for any subjective wellbeing measurements. I also claim that the phenomenon of adaptation to illness raises important questions for health economics, and that the psycho-social mechanisms involved in adaptation can be illuminated by a phenomenological analysis.”

 

Medical humanities blog homepage

Medical Humanities

An international peer review journal for health professionals and researchers in medical humanities. Visit site



Creative Comms logo

Latest from Medical Humanities

Latest from Medical Humanities