Dance, Medicine and Marginalisation: The Limits of Law by Shawn Harmon
11/11/15
At our third InVisible Difference Symposium, ‘Beyond the Tipping Point? Dance Disability and Law’ (6-7 November 2015, in Coventry), a number of questions were raised in relation to the operation of law in the dance, and more specifically, the disabled dance setting. While some areas of law are much more pertinent to the practice of dance and the actions that dancers might take to protect their rights and income streams, the significance of the medical framework, it seems, should not be dismissed. It might be conceded that this framework – which includes medical education, medical law, and the vast medical architecture – is not so relevant as a legal standard-setter in dance (i.e., it does not directly influence participation in the creative process, ownership of dance, or the ‘mainstreaming’ of disabled dance), but it does sit stoutly if not resoundingly in the background.
The medical framework, which is informed by the medical model of disability, is a powerful social organiser, informing general sensibilities about health, healthiness, fitness, etc. In short, it imposes a particular ‘gaze’ on (disabled) people and so serves as a marginalising social force. Through its so-called objective (scientific) standards/measures, it identifies species-typical functioning, and so helps define the ‘normal body’. Thus, it characterises the different body as something that is ‘broken’ – as something in need of repair, or special management – and so not to be highly valued. To put the worst possible spin on it, in a very strong and authoritative voice, this framework says, perhaps subtly:
What you get from a disabled dancer is something that is produced from a position of weakness or un-wholeness, and so cannot be expected to be as good as something from a non-disabled dancer – it is therapeutic, not expert, and because the dancer’s underlying physiological and medically-labelled condition is something we would wish, acting beneficently, to eradicate, or to cure, or to manage, we need not trouble ourselves to articulate measures for excellence and debate that is specifically appropriate for these dancers; to do so may be counteractive to our corrective programme.
This message, even if unintentional, influences perspectives and outcomes in cultural practice, cultural acceptance, and cultural memory.
Of course, while disabling conditions can benefit from medical interventions and support, it is not a given that we need to ‘other’ these bodies, which has the effect of marginalising or devaluing them and the things they can accomplish. Indeed, while many of those dancers with whom we interacted did not consider the medical framework to be particularly relevant to their work, they did have negative experiences within the medical architecture, and that, in some cases, coloured the creative process, the stories told, etc. One of the messages coming from the Symposium was that more could be done in medical, ethical, and legal education to change the view taken of variance and variety in the human body, and to encourage a less potentially disempowering gaze within the context of the medical encounter.
In support of this, the importance of human rights was noted. Interestingly, both medical law and bioethics are informed by the human rights framework (and some might even suggest that they are sub-categories of this framework). Indeed, medical law has come a long way in the last 20 years to move medical practice away from old-style paternalism toward a more dignity-centred, patient-centred, autonomy-grounded approach. And we are now seeing the very beginnings of that approach being bolstered in some respects by an equally dignity-based solidarity approach – an approach to decision-making that isn’t just about empowering patients and patient families, but is also about viewing decisions within the context of a wider caring society within which we all acknowledge that we owe duties in addition to holding rights. It would be useful to think about how we can further encourage and operationalise this solidarity approach, and what that might mean for the acceptance and indeed the celebration of difference within society and within cultural practices (like dance).
This suggestion highlights something that is critically important to recognise, namely that there is ‘politics’ in what we’re doing, and there are limits to what the law can accomplish. Indeed, various participants, in addition to the project team, noted that fact. And if the law is not really getting us where we want to be because of the model it endorses (i.e., as in medical law), or the limitations placed on who can make claims and against whom (i.e., as in human rights law), then we need some non-legal strategies. Bearing that in mind, there are two things that stakeholders might do.
First, public debate. Human rights discourses could be used more often and more explicitly within dance, bioethics, and beyond to help shift perspectives on the value of difference/variance. In undertaking these discourses, there is value in thinking at a level higher than rights – we might move away from discussions about standards and think more about the values that inform standards, and how we can better operationalise those values to make a more equitable society in which disabled dance, for example, is better understood, better supported, better heralded, etc. UNESCO encouraged this with its Universal Declaration of the Human Genome and Human Rights (1997), [1] and its Universal Declaration of Bioethics and Human Rights (2005), [2] both of which are meant to inform domestic discourses. As practitioners of law, dance, medicine, and more we should explicitly draw on these instruments whenever we can, transporting them beyond the legal setting.
Second, we might think very seriously about reorienting medical education. While physiological approaches and scientific measures of the ‘normal’ are inevitable and valuable, medical training should be altered such that those who emerge at the end of the process and become part of the powerful framework that is the medical architecture have a broader and more holistic perspective, with a new and less marginalising language, for this language and perspective clearly shapes society’s perspective of normality and of the value attached to different ways of being. Encouragingly, we heard some stories at the Symposium of medical schools trying new approaches to educating their students about disability, such as getting med students to partner with disabled dancers for a semester to better understand the different ways of being. Programmes like this echo the recommendations previously made. [3]
[1] Universal Declaration of the Human Genome and Human Rights (1997), at http://portal.unesco.org/en/ev.php-URL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.html.
[2] Universal Declaration of Bioethics and Human Rights (2005), at http://portal.unesco.org/en/ev.php-URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html.
[3] S Harmon, ‘The Invisibility of Disability: Using Dance to Shake from Bioethics the Idea of ‘Broken Bodies’’ (2015) 29 Bioethics 488-498.
The medical framework, which is informed by the medical model of disability, is a powerful social organiser, informing general sensibilities about health, healthiness, fitness, etc. In short, it imposes a particular ‘gaze’ on (disabled) people and so serves as a marginalising social force. Through its so-called objective (scientific) standards/measures, it identifies species-typical functioning, and so helps define the ‘normal body’. Thus, it characterises the different body as something that is ‘broken’ – as something in need of repair, or special management – and so not to be highly valued. To put the worst possible spin on it, in a very strong and authoritative voice, this framework says, perhaps subtly:
What you get from a disabled dancer is something that is produced from a position of weakness or un-wholeness, and so cannot be expected to be as good as something from a non-disabled dancer – it is therapeutic, not expert, and because the dancer’s underlying physiological and medically-labelled condition is something we would wish, acting beneficently, to eradicate, or to cure, or to manage, we need not trouble ourselves to articulate measures for excellence and debate that is specifically appropriate for these dancers; to do so may be counteractive to our corrective programme.
This message, even if unintentional, influences perspectives and outcomes in cultural practice, cultural acceptance, and cultural memory.
Of course, while disabling conditions can benefit from medical interventions and support, it is not a given that we need to ‘other’ these bodies, which has the effect of marginalising or devaluing them and the things they can accomplish. Indeed, while many of those dancers with whom we interacted did not consider the medical framework to be particularly relevant to their work, they did have negative experiences within the medical architecture, and that, in some cases, coloured the creative process, the stories told, etc. One of the messages coming from the Symposium was that more could be done in medical, ethical, and legal education to change the view taken of variance and variety in the human body, and to encourage a less potentially disempowering gaze within the context of the medical encounter.
In support of this, the importance of human rights was noted. Interestingly, both medical law and bioethics are informed by the human rights framework (and some might even suggest that they are sub-categories of this framework). Indeed, medical law has come a long way in the last 20 years to move medical practice away from old-style paternalism toward a more dignity-centred, patient-centred, autonomy-grounded approach. And we are now seeing the very beginnings of that approach being bolstered in some respects by an equally dignity-based solidarity approach – an approach to decision-making that isn’t just about empowering patients and patient families, but is also about viewing decisions within the context of a wider caring society within which we all acknowledge that we owe duties in addition to holding rights. It would be useful to think about how we can further encourage and operationalise this solidarity approach, and what that might mean for the acceptance and indeed the celebration of difference within society and within cultural practices (like dance).
This suggestion highlights something that is critically important to recognise, namely that there is ‘politics’ in what we’re doing, and there are limits to what the law can accomplish. Indeed, various participants, in addition to the project team, noted that fact. And if the law is not really getting us where we want to be because of the model it endorses (i.e., as in medical law), or the limitations placed on who can make claims and against whom (i.e., as in human rights law), then we need some non-legal strategies. Bearing that in mind, there are two things that stakeholders might do.
First, public debate. Human rights discourses could be used more often and more explicitly within dance, bioethics, and beyond to help shift perspectives on the value of difference/variance. In undertaking these discourses, there is value in thinking at a level higher than rights – we might move away from discussions about standards and think more about the values that inform standards, and how we can better operationalise those values to make a more equitable society in which disabled dance, for example, is better understood, better supported, better heralded, etc. UNESCO encouraged this with its Universal Declaration of the Human Genome and Human Rights (1997), [1] and its Universal Declaration of Bioethics and Human Rights (2005), [2] both of which are meant to inform domestic discourses. As practitioners of law, dance, medicine, and more we should explicitly draw on these instruments whenever we can, transporting them beyond the legal setting.
Second, we might think very seriously about reorienting medical education. While physiological approaches and scientific measures of the ‘normal’ are inevitable and valuable, medical training should be altered such that those who emerge at the end of the process and become part of the powerful framework that is the medical architecture have a broader and more holistic perspective, with a new and less marginalising language, for this language and perspective clearly shapes society’s perspective of normality and of the value attached to different ways of being. Encouragingly, we heard some stories at the Symposium of medical schools trying new approaches to educating their students about disability, such as getting med students to partner with disabled dancers for a semester to better understand the different ways of being. Programmes like this echo the recommendations previously made. [3]
[1] Universal Declaration of the Human Genome and Human Rights (1997), at http://portal.unesco.org/en/ev.php-URL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.html.
[2] Universal Declaration of Bioethics and Human Rights (2005), at http://portal.unesco.org/en/ev.php-URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html.
[3] S Harmon, ‘The Invisibility of Disability: Using Dance to Shake from Bioethics the Idea of ‘Broken Bodies’’ (2015) 29 Bioethics 488-498.
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