What perspectives can narrative and Medical Humanities give to disability studies? The article Disability and narrative: new directions for medicine and the medical humanities by Rebecca Garden, published in the BMJ, offers us a reflection on this.
Garden highlights how what we call “disability” has historically been defined exclusively by medicine, mainly through the processes of diagnosis and treatment. However, the medicalisation of disabilities places these conditions and their overcoming only at an individual level within the clinical interaction. In this framework, disabilities are identified as an “attribute” of the person, against a standard “normality” or “ability”.
The movements born for the recognition of disability rights – evolved mainly in the 1970s in the United Kingdom and the United States, under the impetus of broader civil and women’s rights movements – have rejected this medical disability model precisely because it ignores the components on which disability studies focus: the social, economic and political factors that determine disability. The very definition of “disability” today includes the social features: disability is a complex set of conditions, many of which are created by the social environment. Recognising this interaction, Garden continues, between physiological disabilities and social factors is a fundamental step to also address the inequalities in care that people with disabilities encounter.
What role can narrative and medical humanities play in recognition of disabilities?
According to Garden, Medical Humanities allow us to contextualise the biomedical discourse, illuminating the social context of illness, suffering and disability. Here, we can see the structural inequalities that create the conditions for disability: the discrimination that prevents equal participation of disabled people in society.
If Medical Humanities help us to give a social context to disability, narrative is the tool that can effectively enter into training and clinical practice. Through narrative, doctors can use a powerful means to investigate the experiences of people with disabilities and incorporate them into their practice. They can also understand the delicate balance between medicalisation and the need for care, perhaps one of the most problematic points in the disability sphere; to make this concept more explicit, Garden cites a reflection by activist Eli Clare:
My [cerebral palsy] is not a medical condition. I need no specific medical care, medication, or treatment for my CP. […] Some disabled people, depending on their disabilities, may indeed have pressing medical needs for a specific period of time or on an ongoing basis. But having particular medical needs differs from labelling a person with multiple sclerosis as sick, or thinking of quadriplegia as a disease.
This step, Garden argues, can help doctors not to label people with disabilities and their treatment needs solely based on their condition, to accommodate awareness and self-determination of these people in their treatment decisions and treatment pathway.
Medical humanities scholars who incorporate disability studies and disability rights perspectives into their work can help clinicians and others to improve medical care for disabled people and those who are chronically ill. The incorporation of disability studies perspectives can develop the theoretical foundations of the medical humanities by creating a critical framework for discussing the socio-economic forces that shape the individual accounts of disability and illness represented in narratives and other literary texts (including film, video and visual arts). Through this critical engagement with narratives, clinicians can better understand the perspectives of people with disabilities and shift the balance of power in the clinic. By seeing disabled people as authorities on how best to communicate and by accommodating physical and intellectual differences through more expansive approaches to communication and the environment, clinicians can begin to bridge the divide between biomedicine and disability studies/disability rights. They can work to become partners in care rather than gatekeepers of disabled people.