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Disability Studies

Book Review: Re-Thinking Autism

9 Jan, 17 | by cquigley

9781849055819

Re-Thinking Autism: Diagnosis, Identity and Equality. Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). London and Philadelphia: Jessica Kingsley Publishers. 2016.

 

Reviewed by Jennifer S. Singh

Assistant Professor of Sociology at Georgia Tech and author of Multiple Autisms: Spectrums of Advocacy and Genomic Science

 

Is any stable and enduring definition of autism possible? Is autism a disruption of what it means to be human? Is it possible to imagine services differently? These are just some of many critical questions addressed in a timely edited book, Re-Thinking Autism: Diagnosis, Identity and Equality. The nineteen authors who contributed to this volume critically engage with “this thing called autism,” in order to disrupt the dominant biomedical model surrounding the diagnosis, treatment, and understanding of autism. The editors describe the volume as a collection of “critical autism studies,” an emerging field concerned with whether the diagnosis of autism is scientifically valid and useful for the lives of people who are labeled with an autism diagnosis, as well as their families and allies. The roots of this approach are cross-disciplinary and draw from a range of perspectives such as critical psychiatry, disability studies, cultural studies, and the social sciences. This three part volume has something for everyone – parents of children with autism, practitioners who provide various of services to people living with autism, and researchers and academics in a range of fields such as psychology, psychiatry, disability studies, cultural studies, or education. The scholars are primarily located in the UK, with a few authors from Canada, Australia, and Brazil. This assemblage of disciplinary perspectives and geographic locations provides important insights into the scope and depth of how researchers are thinking about autism through a critical lens.

The first part of the book grapples with the question: What is autism? It starts with a personal account from Katherine Runswick-Cole, who acknowledges the dilemma of her status as a mother-researcher and the risks of not challenging dominant biomedical frameworks of autism. The focus of her concern, like much of the other authors in this volume, is not about autism itself, but “the systems, attitudes, and environments that disable people with autism” (p. 23). She eloquently argues that “this thing called autism” is a contemporary cultural construct; a narrative that dominates or drowns out all other stories of autism that can be told. The next two chapters focus on the history of the changing definition and diagnosis autism and the wide variation of symptoms that exists in any one person with autism. Sami Timimi and Brian McCabe demonstrate how the biological understanding of autism has not become any clearer since it was first described by Leo Kanner in the 1940’s. These authors suggest that autism spectrum disorder is not a coherent biological construct and lacks conceptual clarity. Richard Hassall critically asserts that there is “no single distinctive psychological or neurodevelopmental disorder represented by the concept of ‘autism’” (p. 49). Hassall challenges us to re-think whether autism is a ‘natural kind’ of disorder, which conceptualizes autism as fundamentally biological deficiencies. This predominant framework reinforces those with the label of autism as essentially different and abnormal. The last chapter in Part 1 is an empirical study of public negotiations surrounding the category of autism in Brazil, including an analysis of the polarization within the Brazilian mental health community of the ontological status of autism (mental disorder or disability) and representations of autism in Brazilian printed media and online social networks. These different lines of analyses demonstrate how autism is no longer exclusively in the domain in medical science and extends to various other public spheres, including parent activists, lawyers, and virtual social networks. These alternative stories disrupt the ontological status of autism as a ‘problematic category.’

Part 2 of the book offers the most interesting critical analyses with a focus on deconstructing autism. It starts with a brilliant chapter by Anne McGuire who offers a critical and nuanced inquiry of the normative and normalizing nature of violence against people with autism promoted by mainstream news and advocacy organizations. McGuire examines the dominant discourse of ‘people living with autism,’ which discursively frames autism as some ‘thing’ separate from the fully living human person. Other chapters in this section also begin to question the framing of autism in the context of what it means to be normal and human. Kim Davies critiques the deficit Theory of Mind model of autism to expose how this ablest framework places autistic people at the ‘edges of the boundary of human being-ness” due to their lack of the very qualities that make us human (p. 133). Dan Goodley also begins to “dissect humanity” through the lens of autism and its relationship with the categorization of the human being. Drawing on post-colonial theory Goodley deconstructs how autism weaves in and out of both the ethnoclass man (embodied in the white, heterosexual, American, able, male) and those engaged in wider human struggle. His conclusion holds a similar sentiment that is thematic throughout this section, “any study of autism must also engage with the simultaneous study of the human” (p. 157).

Part 3: Changing Practice, is the largest section and made up of seven chapters that contend with whether the label of autism adds anything to how various services and practices of autism are experienced from a range of perspectives and disciplinary practices such as education, psychotherapy, psychiatry, or neuroscience. A central theme in this section is that professionals (e.g., educators, therapists, clinicians, or researchers) need to “resist the dehumanizing attacks on personhood that expel children to the margins” (p. 199) and “be committed to the qualities of people, not as autistic, but as human beings in shared moments of time and space” (p. 249). Gail Simon describes this shift in professional practice as having a “reflexive curiosity” about new ways of being with people with autism that opens up opportunities for meaningful and fruitful dialogue (p. 285). As I argue in my own research on the excess funding and research in autism genetics research in the U.S. (Singh, 2016), Simon and other authors highlight how many avenues of research that would be beneficial for people diagnosed with autism are missed or overlooked such as long-term and quality of life issues.

Although this volume brings much needed attention to alternative ways of knowing autism and critiques of the social construction of autism in relation to what it means to be “normal” and “human,” this is not the first attempt to map out a field of “critical autism studies.” Joyce Davidson and Michael Orsini edited a 2013 collection called Worlds of Autism: Across the Spectrum of Neurological Difference. Their conceptualization of critical autism studies is similar to Re-Thinking Autism and is based on an interdisciplinary commitment to “develop analytic frameworks using inclusive and non-reductive methodological and theoretical approaches to study both the nature and culture of autism” (p. 12). It is different in that it focuses more on how power relations shape the field of autism and how narratives of autistic individuals are becoming actors with agency that disrupt assumptions of normalcy and (cognitive) difference. Although power is implicit in many of the chapters in Re-Thinking Autism, the mention of power: who has it, how is it used, and how it affects what we know and understand about autism is less explicit, with a few exceptions. Also, unlike the serious commitment to situated knowledge of autistic people themselves in Worlds of Autism, a commitment to include autistic subjectivities are less apparent in Re-Thinking Autism. Finally, despite the subtitle, Diagnosis, Identity and Equality, there is a limited focus on inequalities that exist in access to early evaluation and services that are apparent based on social class, race and gender. I was surprised of the limited discussion of broader structural inequalities that enable experiences, autism constructs, levels of resistance, and/or cultural and symbolic meaning of autism. These voids are by no means limitations of the volume, but rather speak to the broad scope in which critical autism studies can engage and the need for further analyses on questions this edited volume raises on how we can continue to “re-think autism.”

 

Singh, Jennifer S. Multiple Autisms: Spectrums of Advocacy and Genomic Science. Minneapolis: University of Minnesota Press. 2016.

Davidson, Joyce, & Michael Orsini (Eds.). Worlds of Autism: Across the Spectrum of Neurological Difference. Minneapolis: University of Minnesota Press. 2013.

Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). Re-Thinking Autism: Diagnosis, Identity and Equality. London and Philadelphia: Jessica Kingsley Publishers. 2016.

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.

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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.

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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

The Screening Room: a review of the Lebanese film Ghadi

18 May, 16 | by cquigley

Ghadi New Poster

Music overcoming disability –  Ghadi, Lebanon, 2013, directed by Amin Dora

Reviewed by Dr Reem Gaafar, a Sudanese doctor, writer, filmmaker and graphic designer

 

A special screening will take place at the Polish Cultural Centre, 238 King Street, Hammersmith, London W6 0RF, Sapphire Room, 2nd Floor, at 8pm Friday 3rd June 2016. To book tickets khalid.ali@bsuh.nhs.uk

To buy copies of the film, please email eskaff@thetalkies.com

 

Ghadi, a 2013 film from Lebanon tells a poignant story: In a small town called Al Mshakal, there lived a young boy named Leba. Leba had a stutter, and was subjected to bullying and humiliation from his schoolmates, until a mysterious music teacher, Mr. Fawzi moved into town with his piano as well as nightly Mozart recitals. Using music lessons and improvised speech therapy, Mr. Fawzi helped Leba grow out of his stutter. Years later, Leba becomes a music teacher himself. His music attracts his childhood crush Lara into his classroom, and one Sunday afternoon, into his life. Their happy marriage is crowned with two beautiful daughters, but the family’s blissful life is disturbed by the obtrusive local community urging Leba and Lara to try for a baby son. The so-called caring community lived on gossip and backbiting with dishonesty flowing through the cobbled streets like a dark, murky river.

Eventually, a baby boy is conceived, but to the couple’s distress he is expected to be born with special needs. Leba has serious concerns: should the child be born or not? Is it fair to bring such a child into the world? He seeks advice from Mr. Fawzi, his childhood teacher and friend. Mortified by Leba’s doubts, Mr. Fawzi advises him to name the child immediately, to give him a presence, an existence, and the right to live. A few months later, Ghadi is born with Trisomy 21 (Down’s syndrome) becoming the most handsome boy in the neighborhood.

In today’s world of modern technology and advanced medicine, it has become relatively common for a couple to face the impending reality of bringing a ‘different’ child into the world. Basic ultrasound, amniocentesis and chorionic villous sampling can detect as early as 10 weeks a child with congenital and chromosomal anomalies, genetic disorders of metabolism, and various growth abnormalities. First trimester screening for Down’s syndrome has become routine in the developed world (Huang et al, 2015), and screening for anomalies at 18-20 weeks is becoming regular practice in the developing world. The course of action that follows the discovery of an aberration, however, is not at all globally agreed upon.

Many factors – religious, legal, educational, social and others influence the expecting couples’ decision to undertake the screening procedures in the first place, and to continue or terminate the pregnancy. Studies suggest that health professionals are more likely to lean towards termination of abnormal pregnancies than the general lay person (Drake, Reid and Marteau, 1996, Norup, M, 1998), and that a third of women who have a sibling with Down’s syndrome would consider termination if their prenatal screening proved they were carrying a child with chromosomal aneuploidy (Bryant, Hewison and Green, 2004). However, some individuals remain uncertain about terminating a fetus with Down’s syndrome compared to other conditions such as spina bifida and hemophilia (Bell and Stoneman, 2000). Some parents and/or health professionals think it is justified to not provide children with Downs’ syndrome the necessary medical and social care they need. Some families hand over the responsibility of these children’s care to public health systems through adoption (Julian-Reyniar et al, 1995).

On the other hand, advances in medicine and technology are allowing everyone, including the disabled, to live longer and healthier lives. Disability activists are now calling for women to resist the pressure to abort a disabled fetus, believing that such acts oppress the rights of the disabled, as well as adversely affecting all women (Saxton, M. and Davis, L., 2013).

While prenatal screening is being increasingly offered in the Middle East, the attitudes of both lay people and doctors are still unknown concerning abortion in general, and aborting a potentially-disabled fetus in particular. It is to be expected that these attitudes are based on cultural and religious beliefs and the laws that govern them. The Middle East and North Africa (MENA) region is predominantly Muslim, and the local laws rely heavily on the different interpretations of Islamic ruling in this matter, as well as on those laws inherited from colonial times. Abortion laws range from liberal to very restrictive, but the position of selective abortion relating to Down’s syndrome is not at all clear. Only Tunisia and Turkey have laws that allow abortion without restriction based on underlying reason (Dabash, R and Roudi-Fahmi, F, 2008, Hessini, L, 2007).

Ghadi spends his days and nights at the family’s home singing his peculiar songs, irritating the neighbourhood even more than Mr. Fawzi’s Mozart recitals used to. Eventually, Leba is faced with an ultimatum: either to send Ghadi to a specialist institution, or face the prospect of eviction with his family from their hometown. Desperate for a way out, Leba, helped by the village outcasts, succeeds in conjuring an elaborate plan to convince everyone that Ghadi is an ‘angel’ who can grant local people their wishes and punish them for their sins. In an unexpected twist of events, the townsfolk transform into honest, law-abiding citizens in fear of the wrath of ‘Ghadi, the angel’.

The film suggests that in spite of Leba’s initial apprehension and the community’s rejection of Ghadi, the pro-life decision for children with special needs ultimately turns out to be the correct and rewarding decision for all. Down’s syndrome is now officially recognized globally with a whole week dedicated annually to increasing awareness.

Special thanks to Amin Dora and Elyssa Skaff for kindly facilitating this review.

Address for correspondence: gaafar.reem@outlook.com

References

Bell, M. and Stoneman, Z.  (2000). Reactions to Prenatal Testing: Reflection of Religiosity and Attitudes Toward Abortion and People With Disabilities. American Journal on Mental Retardation: January 2000, Vol. 105, No. 1, pp. 1-13.

Bryant, L., Hewison, JD and Green, M., (2005). Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down’s syndrome. Journal of Reproductive and Infant Psychology, Volume 23Issue 2, 2005, pg. 181 – 198, DOI: 10.1080/02646830500129214

Dabash, R and Roudi-Fahmi, F., (2008). Abortion in the Middle East and North Africa. Population Reference Bureau, USA. Online, available at

http://gynuity.org/resources/read/abortion-in-the-middle-east-and-north-africa-en/

Drake, H., Reid, M. and Marteau, T. (1996). Attitudes towards termination for fetal abnormality: comparisons in three European countries. Clinical Genetics, 49: 134–140. doi: 10.1111/j.1399-0004.1996.tb03272.x

Hessini, L., 2007. Abortion and Islam: policies and practice in the Middle-East and North Africa. Reproductive Health Matters, vol. 15, no. 29, pg. 74-84

Huang, T., Dennis, A., Meschino, W., Rashid, S., Mak-Tam, E. and Cuckle, H., (2015). First trimester screening for Down syndrome using nuchal translucency, maternal serum pregnancy-associated plasma protein A, free-β human chorionic gonadotrophin, placental growth factor, and α-fetoprotein. Prenatal Diagnosis, Vol 35, pg. 709 – 716, DOI: 10.1002/pd.4597

Julian-Reynier, C., Aurran, Y., Dumaret, A., Maron, A., Chabal, F. Giraud, F. and Aymé S, 1995. Attitudes towards Down’s syndrome: follow up of a cohort of 280 cases. J Med Genet 1995;32:597-599 doi:10.1136/jmg.32.8.597

Norup, M. (1998), Attitudes towards abortion among physicians working at obstetrical and paediatric departments in Denmark. Prenat. Diagn., 18: 273–280. doi: 10.1002/(SICI)1097-0223(199803)18:3<273::AID-PD256>3.0.CO;2-5

Saxton, M. and Davis, L., (2013). Disability rights and selective abortion. Chapter 7: The disability studies reader, pg. 87 – 99. 4th edition, Routledge, New York USA

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