‘Critical Disability Studies and the Disabled Child’: Book Review

The mantra “nothing about us without us” gains extra weight when applied to disabled children, who frequently have decisions about their care and their representation decided by parents and various adult “experts”, services, and charities. Noting that this tendency to speak for disabled children has been reproduced in research, Harriet Cooper’s Critical Disability Studies and the Disabled Child: Unsettling Distinctions (2021) seeks to address this bias by exploring the emotional, biological, psychosocial, and political process of being made and unmade as a disabled child. This is achieved through an innovative fusion of object-relations psychoanalysis, disability studies, affect theory, queer studies, and literature alongside italicised and poetic snippets of prose representing Cooper’s ‘unremembered’ (2021: 16) and reconstructed encounters with rehabilitative and developmental approaches to her disability.

Focusing on the figure of the pre-verbal disabled child, Cooper asks how this process of being made and unmade is experienced when you cannot properly comprehend or respond to it. In chapter one, Cooper looks to object-relations psychoanalysis with its focus on the look between the mother and child that blurs the boundary between the two, contextualising this alongside her own experience of the scrutinising gaze (or ‘look’ (2021: 32) of medical professionals on her troublesome childhood body alongside literary representations of childhood disability set during unique political moments and ideologies that have salience for her white middle-classed childhood. Analysing Doris Lessing’s The Fifth Child (1988), which positions the possibly-disabled child as a threat to Thatcherite ideals of family, individualism, and aspirational capitalism, and Frances Hodgson Burnett’s Edwardian children’s book The Secret Garden (1911) where the disabled child is hidden from view, Cooper conceptualises the act of looking as either intensified in the desperate search to “know” or denied for precisely the opposite reason. In The Fifth Child, for example, the arrival of Ben, a child who is markedly different and thus threatening, prompts much of his family to avoid looking at him, suggesting that he be placed in an institution (despite not having a medical diagnosis). Harriet (Ben’s mother) by contrast looks intensely at him and urges others (medical professionals) to do the same, in order to locate the biological source of his difference, but also signs of his humanity. The name for ‘what he is’ (Lessing, 2007: 158) constantly evades her and dehumanises Ben in the process. By contrast in The Secret Garden, Colin – the disabled cousin who the young protagonist befriends – is kept out of sight in the manor house. Cooper contrasts the enforced hiding of Colin with the voluntary withdrawal of his father, who is himself disabled, and of whom the housekeeper notes ‘He cares about nobody. He won’t see people’ (Hodgson, 2017: 16) She notes that by juxtaposing seeing and caring in this ambiguous way there is an implication that by not only not refusing to see his son but also choosing to have him hidden away, the father seeks to avoid the burden of caring, something that is influenced by a tragic and guilt-ridden view of disability. As a result of this, Colin internalises an objectified and rationally detached view of himself and his own disability.

In response to these texts and her own experience Cooper conceptualises the ‘over-looking’ (2021:44) gaze, with the deliberate double meaning referring to the intense scrutiny placed on the dysfunctional body parts of the disabled child whilst the rest of their body and self is not seen. Her experience of being over-looked (including a missed diagnosis at an early age) arrives as a compulsive overcompensation born from a fear of not seeing and trusting the world as it is, which in turn draws comparisons to the desperate search for diagnosis in The Fifth Child. Similarly, despite criticisms of its oppressive representation of disability, Cooper cannot “overlook” her own enchantment with The Secret Garden as a child, a fascination that might reveal further layers to her own internalised oppression as well as how the story highlights it at work.

Toby Stephens, Claire Skinner and Storme Toolis in rehearsals for A Day In The Death of Joe Egg. Photo by Myles Wright. Toolis was the first disabled actor to play the titular role in 2019, having cerebral palsy herself. Image Source

In chapter three it is not just the child who is seen to internalise the look but the parents. Here Cooper shows how the disabled child deconstructs the notion that development and rehabilitation are inherently good, desirable, and politically neutral. Utilising Bakhtin’s (1984: 84) concept of the chronotope and by comparing Peter Nichol’s black comedy play about caring for a non-verbal child with cerebral palsy A Day in the Death Of Joe Egg (1967) with the real life case of severely disabled woman Ashley X (whose parents decided to have her operated on in order to stop her developing to full her size and weight) Cooper shows how the non-verbal disabled child frustrates developmental and rehabilitative time and space whilst highlighting its ideological underpinnings. Whereas Joe Egg (a nickname that reflects the child’s immobility and objectification) frustrates her parent’s developmental expectations (occupying what Cooper refers to the ‘chronotope of statis’ (2021: 57)), Ashley X deliberately has her development halted because of a patriarchal and ableist perception of misalignment between her child-like mind and image and her changing body, a treatment which Cooper suggests does not fit comfortably within rehabilitative or development frameworks. As such, she posits that the ‘rehabilitative chronotope’ (Cooper 2021: 59) is an attempt to bring the time and body of the disabled child (that they do not experience as out of step themselves) in line with normative developmental time, something that her own personal account of physiotherapy and the apparent slowness of her body reveals to be disorientating and oppressive.

Chapter three takes a different approach to time, where Cooper utilises Edelman’s (2004) queer theory concept of reproductive futurism which argues that because homosexuals cannot reproduce, they have no investment in the future. Applying this theory to the disabled child, the chapter opens with an autobiographical recreation of a diagnostic moment that is positioned in terms of all the “normal” childhood activities that Harriet will apparently never partake in. Because of this the disabled child is paradoxically revealed as having no future and yet being orientated to a particular kind of future without choice. In this case the absence of these childhood activities (such as riding a bike or playing a musical instrument) coupled with the ambiguity of diagnostic language (‘might never’ (Cooper: 103) suggesting both possibility and a lack thereof) orientates Harriet and her parents towards rehabilitative physiotherapy as the only viable solution. In order to consider what impact this diagnosis has on the pre-verbal child who did not seek it nor could understand it, Cooper utilises Butler’s (1997a) theory of performative injurious speech, highlighting its physically affective qualities. However, whilst Butler states that a subject comes into being only when they are called by a name, the act of diagnosis naming both makes and unmakes Harriet as a subject.

In the last chapter Cooper works through Butler’s claim that the performative speech act can be both enabling and disabling, noting as Samuels (2002: 58-76) does the reliance on the metaphorical language of disability and immobility in Butler’s work and the links to her own embodied experience of rehabilitation. Cooper seeks to answer whether it is possible for the rehabilitated child to ‘counter the offensive call’ (Butler 1997a: 2). Once again referencing her experience of physiotherapy, where her “able” limbs were restricted in order to “fix” her dysfunctional body parts, Cooper narrates and theorises this counter-intuitive approach where her bodily function was positioned as ‘wrong’ (2021: 145) despite not being personally perceived that way. Subsequently because of this internalisation, something that forces her to occupy a ‘false body’ and ‘false self’ (Cooper 2021: 138 & 139), she is unable to counter the offensive call precisely because she does not recognise it as such. It is only through psychoanalysis as an adult (a practice she acknowledges has a problematic history of pathologising disability as well as not being accessible to a lot of people) that she is able to re-experience the trauma of rehabilitation, to finally recognise its oppressive dimensions, and begin to resist.

Promotional still from The Secret Garden remake 2020, directed by Marc Munden starting from left to right, Dixie Egerickx, Edan Hayhurst, and Amir Wilson.

The presentation of resistance as not straightforward and non-linear is a powerful component of Cooper’s work that has potential applications for both disability studies and the medical humanities alike. Cooper’s concept of over-looking could be used to describe the often-uneasy relationship between disability and the medical humanities. As both Lau (2018) and Herndl (2015: 593-598) have highlighted the opposing origins of disability studies in activism and the medical humanities as an addendum to technical training in medical schools meant that in the latter field an individualistic medical approach to disability, diagnosis, and treatment won out and ideological, social, economic factors were overlooked. Focusing on various clinical moments including diagnosis, rehabilitation, and analysis, Cooper recontextualises these processes and more importantly articulates how they feel and their impact in a way that could be beneficial to medical training but also to a critique of medicine itself. Her willingness to be with and utilise ambivalence, ambiguity, discomfort, and failure also has the potential to cut through a sometimes straightforward and linear path to resistance that is sometimes presented in disability studies and activism, particularly regarding what is sometimes criticised as a dogmatic enforcement of the social model. This creative uncertainty is in turn a Crip methodology that mirrors the awkward processual transition from disabled childhood to disabled adolescence and adulthood that Cooper describes in her book, recalling work on the creative and critical nature of failure and loss present in Diedrich’s ‘ethics of failure’ (2007 xxii) and Halberstam’s ‘queer failure’ (2011:89), as well as Sianne Ngai’s work on the political potential of ‘ugly feelings’ (2005).

One dimension absent from Cooper’s work is an exploration of the relationship between disability, rehabilitation, and charity. Rather than seeing this as a limitation of the text I would suggest that it encourages further reading to draw connections and strengthen the argument. Paul K. Longmore’s (2016) critical work on the disability telethons in the US is one example of a work that bolsters Cooper’s arguments regarding individualistic capitalist ideologies by bringing in specific nationalist and historical frameworks. Having been born with Cystic Fibrosis, the influence of charity on how disability is felt and perceived is something I have personal experience with and was key to the beginnings of my own resistance much as psychoanalysis was for Cooper. It is because of this personal stake that I found myself resonating strongly with this text, having also experienced this awkward transition, medical scrutiny, and compulsive need to be “normal”. So, when Cooper suggests that this book was in part written to help disabled children and adults who have experienced internalised oppression, I can safely say that this text has helped me to rearticulate my own childhood through fresh and critical eyes.

References

Bakhtin, Mikhail. 1981. Forms of time and of the chronotope in the novel. M. Holquist (eds) The Dialogic Imagination: Four Essays. Austin TX: University of Texas Press, pp. 84-258.

Burnett, Frances Hodgson. 2017 [1911]. The Secret Garden. Glasgow. William Collins.

Butler, Judith. 1997a. Excitable Speech: A Politics of the Performative. London: Routledge.

Cooper, Harriet. 2021. Critical Disability Studies and the Disabled Child: Unsettling Distinctions. London: Routledge.

Diedrich, Lisa. 2007. Treatments: Language, Politics, and the Culture of Illness. Minneapolis. University of Minnesota Press.

Edelman, Lee. 2004. No Future: Queer Theory and the Death Drive. Durham NC: Duke University Press.

Halberstam, Jack. 2011. The Queer Art of Failure. Durham, NC: Duke University Press.

Herndl, Diane Price. 2005. Disease versus Disability: The Medical Humanities and Disability Studies. PMLA.120 (2): 592-598.

Lessing, Dorris. 2007 [1998]. The Fifth Child. London: Harper Perennial.

Lau, Travis Chi Wing. 2018. Taking Stock: Disability Studies and the Medical Humanities (last accessed 29 June 2021).

Longmore, Paul K. 2016.  Telethons: Spectacle, Disability, and the Business of Charity. Oxford: Oxford University Press.

Ngal, Sianne. 2005. Ugly Feelings. Cambridge, MA: Harvard University Press.

Nichols, Peter. 1967. A Day in the Death of Joe Egg. London: Faber.

Samuels, Ellen. 2002. Critical Divides: Judith Butler’s Body Theory and the Question of Disability. NWSA Journal.14 (3): 58-76.

Andrew Godfrey-Meers is a recent PhD graduate in English from the University of Dundee whose thesis explores individualising myths in the field and genre of Graphic Medicine, with a particular focus on disability. His current research interests including critical approaches to empathy in Graphic Medicine and the relationship between disability and the field; he has published articles, reviews, and book chapters (in comic form) with The Comics Grid, Synapses, and Penn State University Press, and was the principal organiser of the Comics & Medicine conference in Dundee in 2016. Find Andrew on Twitter @agoffreymeers.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: