Showing posts with label human rights. Show all posts
Showing posts with label human rights. Show all posts

7 March 2017

Disabled Dancers: Agents of Change?

By Shawn H.E. Harmon

As Blades notes in ‘Narratives and Agency’,[1] a post on the AHRC project, ‘Resilience and Inclusion: Dancers as Agents of Change’[2] (itself a follow-on to the InVisible Difference Project [3]), it is our belief and ambition that disabled dancers are and ought to be agents of change.  This is in no small part a result of our observations that social justice is lacking in the culture creation setting, where those with disabilities have been marginalised and remain significantly under-supported.  However, as Blades suggests, agency is not at all straightforward, being tangled up, as it is, with social frameworks.  What measures of agency might we rely on to make judgments about whether the arts (and specifically dance) field is moving appropriately toward a greater social equality and representativeness?

Writing in the context of development and social justice, Sen argues that agency is a person’s ability to act in support of what she values and has reason to value, and that it is both intrinsically and instrumentally valuable.[4]  People with high levels of agency can more readily pursue actions congruent with their values, and those without may be alienated from their reality, or be forced to submit to conditions that they decry.[5]  So understood, agency clearly has both internal and external elements, but what elements exist and what do we need to attend to in the context of disabled dance to realise the objective of agency for change?  Sen offers five measures for analysing agency; according to Sen, agency:

1.      is exercised in relation to one’s wellbeing and goals;
2.      must be supported by ‘effective power’ (i.e., the power to achieve desired goals); though this may be exercised by a group rather than an individual, the individual must have the ability to influence processes and exercise choice;
3.      requires ‘capability’ (i.e., the space within which individuals might exercise ‘wellbeing freedom’, which itself might be other-regarding);
4.      is appropriately associated not only with values, but with goals the individual has a reason to value (and so might be differentiated substantively from raw autonomy);
5.      is associated with responsibility to understand one’s role in the prevailing conditions as well as that in realising alternative (better) conditions.[2]

There has been some useful work in support of disability and disabled dance, particularly since the Cultural Olympiad,[6] but what is the current state of the disabled dancer’s agency in relation to these measures?

Our findings in the InVisible Difference Project offer some grounds to believe that disabled dancers have made significant strides in (1) systematically advancing a reasonably cohesive set of goals, (4) articulating cogent and both culture- and rights-based reasons to value those goals, and (5) appreciating the responsibility that leadership imposes on those (pioneers) who have wedged their way into the conscience of the elite dance scene and the dance-viewing public.  However, that project has also demonstrated that disabled dancers are incredibly under-resourced and under-supported with respect to measure (2) and (3), a reality which continues to undermine the just advancement of their roles as creators of culture and agents of change.

This reality must be viewed as an affront to the human rights that disabled persons/dancers hold under the Universal Declaration of Human Rights, the UN Convention on the Rights of Persons with Disabilities, and the European Convention on Human Rights.  And many actors have been complicit in the deficiencies that exist, from arts funders, to dance organisations, to memory institutions, to dance critics, and more.[7]  Disabled dancers need to be much more effectively facilitated in exercising their agency if they are ever to adequately perform their desired, demanded and deserving role as ‘agents of change’, and become equal (and celebrated) creators of culture.

The Online Toolkit mentioned by Blades and the associated film described by Brown,[8] both being developed in the Resilience and Inclusion Project, are just two small steps in the many that are needed to realise this objective, others being further research to ascertain the state of the shortfalls in the above measures.  Let us hope that more funding is made available to help generate the ‘effective power’ and to open up the ‘capability spaces’ that are so needed for real change to occur.

Notes and References

[1] H Blades, ‘Narratives and Agency’, 4 December 2016, at https://invisibledifferenceorguk.wordpress.com/2016/12/04/narratives-and-agency/.
[2] Resilience and Inclusion: Dancers as Agents of Change, at https://invisibledifferenceorguk.wordpress.com/.
[3] InVisible Difference, at http://www.invisibledifference.org.uk/.
[4] A Sen, Wellbeing, Agency and Freedom: The 1984 Dewey Lectures’ (1985) 82 J Philosophy 169-221, at 206.
[5] Ryan and Deci, Autonomy is No Illusion: Self-Determination Theory and the Empirical Study of Authenticity, Awareness and Will’ in J Greenberg et al. (eds.), Handbook f Experimental Existential Psychology (NY: Guilford Press, 2004) 450.
[6] M Sinclair, ‘The 2012 Cultural Olympiad: From Initial Planning to Final Delivery and Beyond’ (2014), at https://www.britishcouncil.jp/sites/default/files/moira-sinclair.pdf.
[7] S Whatley, C Waelde, S Harmon, A Brown, ‘Validation and Virtuosity: Perspectives on Difference and Authorship/Control in Dance’ (2015) 6 Choreographic Practices 59-83.

[8] A Brown, ‘Words, Bodies and Film: The Start of a Journey’, 16 December 2016, at https://invisibledifferenceorguk.wordpress.com/2016/12/04/narratives-and-agency/.

14 November 2016

Water, Health and Social Justice: More Rhetoric than Right

By Shawn H.E. Harmon, Janice Graham, Emma FitzGerald, Tanya Davis

The Arts and Ethics Research Group (AERG) at the University of Edinburgh is an international interdisciplinary research group funded by the Institute for Advanced Studies in the Humanities. Through the collaborative working of individuals from the arts, humanities and sciences, it seeks to encourage new insights and public debate around ethical, legal, and social aspects of the practice and governance of medicine, healthcare, and technologies.[1] While one of its overarching inquiries is about the transformative potential of the arts, its constituent creative teams are exploring three broad themes, one of which is innovation and global justice (i.e., values, interests, and power dynamics in designing and delivering healthcare locally and internationally). In pursuit of this, AERG Creative Team 3 (AERG-3), which consists of a lawyer, anthropologist, visual artist, and poet, has begun an exploration of water, which implicates health, cultural practices, and social justice and wellbeing.

10 March 2016

Genetic Non-Discrimination: A Long-Standing Concern Deserving a New Law?

By Shawn H.E. Harmon

The possibility of improving outcomes and cost-effectiveness by tailoring therapies to patients’ genetic profiles (stratified medicine) is a dream of researchers and healthcare programmes, although at present relatively few tests are viewed as reliable.[1] 

Counterbalancing these positives, genetic information can also be used to discriminate against individuals; information about otherwise healthy people’s predisposition can affect how decisions are made in relation to a wide range of fields, including insurance (coverage, premiums, deductibles), employment (hiring, promotion, dismissal), banking (loans), education (funding, acceptance), sports (participation), and more, and has already affected people in relation to employment and insurance.[2]

11 November 2015

Dance, Medicine and Marginalisation: The Limits of Law

By Shawn Harmon

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.

14 January 2015

Broadening the Medical Ethics Perspective Through Dance

By Shawn Harmon

Answers Too Easily Attained?
One of the fundamental questions that is asked through the field of ethics is: ‘How should we live?’ This question must also be central to medical ethics, or ‘bioethics’. However, we seem to believe that we have answered this question, and we have settled into a comfortable application of that answer across a range of clinical circumstances and technological deployments:

  We should live independently and autonomously, without coercion or interference, with few imposed duties and little sense of obligation, free to avoid risk and to vigorously protect our physical and emotional integrity against state organs, private entities, and individuals. 

While this is an oversimplification, the majority of substantive assessments will either explicitly or implicitly begin from a foundational proposition not far removed. The premise is not generally objectionable, but the lack of depth in our ethical reflexivity is disheartening. How have we embedded this premise so deeply that we proceed from it in most every medical and research encounter?