Last week, as the academic term drew to a close, I was really happy to be able to attend a seminar at the School of Law, University of Leeds – by Prof. Luke Clements, with Val Hewison – CEO of Carers Leeds
This was one of the “Conversations” series, hosted by the Centre for Disability Studies, University of Leeds, which provide the opportunity for the presentation of research from across the interdisciplinary field of disability studies, along with a response to the themes and ideas presented, with time for formal and informal discussion. Luke was addressing a fascinating question, relating to the role of carers, and then Val Hewison gave a response from the perspective of her organisation. The seminar also really got me thinking about my own work on the social politics of “voice”, so I thought it would be a perfect topic for this blog – giving me the opportunity (1) to do my best to share the ideas put forward by Luke and Val, (2) to think through the issues they raise in relation to my own work – and (3) to pose some questions of my own for further thought, so that is what I’m going to do here. The question on which Luke focused primarily was this:
“Why is there no radical wing to the ‘care-givers’ movement?”
The seminar began with Luke discussing the origins of the Carers’ Movement – and the prominent role of the UK in its history. He placed this history in the context of the development of identity-based anti-discrimination law, talking about various attempts to achieve for carers the status of a protected group/characteristic (as has been done for sex, race, disability etc). Such attempts have included the Carers (Recognition and Services) Act 1995, and the Carers (Equal Opportunities) Act 2004 – and Luke played a role in the development of both of these statutes. However, despite these legislative achievements, Luke also noted that carers are not, in themselves, recognised as a protected group anywhere in the world.
Turning to case law relating to carers, Luke referenced the case of Attridge Law (a firm of solicitors) v Coleman  IRLR 88, which provides that the concept of “associative discrimination” may apply to carers. This concept, derived from European anti-discrimination law, protects people from discrimination based on their association with a person who is a member of a protected group (e.g. – as in this case, an able-bodied carer of a disabled person). So, rather than being recognised as a protected group in its own right, carers’ legal rights are “piggy-backed” onto those of the disabled people for whom they care.
Luke then moved on to place the position of carers in the wider context of the socio-legal work of theorists who have been critical of the preoccupation of anti-discrimination law with identity – drawing particularly on the work of Martha Albertson Fineman around “Vulnerability Theory” (e.g. Fineman (2008) – see below for link). He used this quote to Fineman to summarise his thoughts:
“The trick is to turn away, not from the law, but from identities to institutional structures”
In expanding on this, Luke argued that “identity doesn’t get you to the destination”. A point that was illustrated with reference to Hainsworth v Ministry of Defence  EWCA Civ 763, a case in which the request of a civilian employee to be relocated from Germany to England, in order to meet the needs of her disabled daughter was refused. Luke explored the possibilities offered in Fineman’s critiques of the neoliberal entanglement of identity (particularly around liberal, individualistic notions of “autonomy”) to achieve the aims of equality and social justice, considering whether a more universalist approach, rooted in the embodied vulnerability inherent in the human condition, may be more useful – in this case, for carers. This led to the question:
“Have we reached the limits of what we can do with anti-discrimination law?”
In a detailed response, Val Hewison (Carers Leeds) explained that pockets of radical social action on the part of carers are to be found around the country. However, she also outlined several challenged faced by the carers’ movement, which I’ve summarised around 3 themes:
- Identity challenges: Many carers dip in and out of caring. It is not (necessarily) a long-term identity category. Also, carers do not necessarily ‘identify’ as carers – seeing their caring role as an extension of family relationships.
- Practical Challenges: Carers are often overwhelmed with their caring responsibilities, and lack the energy to engage in activism outside of the practicalities of their caring role.
- Social Challenges: Carers may experience ignorance or disbelief in terms of their caring roles from employers and authorities. One organisation, when asked to disclose information about the carers employed by them, replied “we don’t have any carers”.
This seminar was fascinating, in engaging with the intricacies and challenges of the role of identity in anti-discrimination law, and placing this area of law in social context by focusing on the experiences of carers. It also raised some really interesting thoughts and questions in relation to my own research interests around what it means to “have a voice” in society.
As part of my PhD research, I’ve explored in social science literature how the concept of “voice” is employed as a “bridge” between the individual and the social world around them – a way of moving between the “inner” world of the individual, and the social and political structures that produce, reproduce, support, and oppress aspects of that individual – and that in turn are shaped, moulded, and challenged by the individual themselves. I’ve also developed a taxonomy of 6 aspects of “voice” that set out how the concept is understood in social science, which are:
- Social participation
In my specific area of interest – mental capacity law – one of the questions that has been particularly interesting me is what happens to the “disruptive” aspect of an individual’s social “voice” when that person loses the mental capacity to make specific decisions for themselves – and it is here that I felt strong resonances with Luke’s focus on the “radical” voice of the Carers’ Movement.
Disruptive “voice” refers to the ways in which a person may seek to create radical individual and social change – it’s the “voice” that a disabled person uses when they chain themselves to the railings of Parliament, or (to use an example quoted by Luke Clements), it’s throwing yourself under the king’s horse in search of “Votes for Women”. It seeks to overturn the State, social, legislative, or bureaucratic status quo, often when other aspects of the individual’s “voice” have been exhausted, and unsuccessful in achieving desired aims.
In situations where people lack or lose capacity, and in the roles of carers, we are confronted with situations in which an individual may be reliant on others to exercise their social “voice” – including in its disruptive forms. I’m particularly interested in what happens to “voice” when a person, for whatever reason, is (deemed) unable to speak for themselves. My background, and longstanding association with community advocacy has brought me face to face with the real-world ethical and practical challenges that arise when we find ourselves in a position of putting our own “voice” at the service of someone else to speak “with” or “for” them and ensure their views are represented, and I really want to understand more about these challenges, and the assumptions, theories, and practices underpinning them. It struck me in the seminar I’ve summarised here, that the challenges of the carers’ movement in achieving social change and recognition in their own right might be a location, similar to advocacy, in which some of these challenges and dilemmas concerning “voice” might be played out.
And I’m wondering what (if anything) my research on social “voice” can offer to clarify and develop understanding of these challenges.
So far, I’ve come up with three questions/thoughts-in-progress that I’d really like to explore and develop further:
- One of the fundamental challenges for carers/advocates is that as the “voice” is socially understood as being rooted in the individual (identity-building, self-determination, self-expression), those who concern themselves with “speaking up for” others, and “ensuring their voice is heard” leave themselves open to charges of inauthenticity and misrepresentation of the “voices” of those for whom they aim to “speak up”. This is especially likely to be the case in situations where the distribution of social or financial power is unbalanced (e.g. where a carer or advocate engages with a professional who “holds the purse strings”), and where it is in the interests of those with whom the carer/advocate is engaging, for them to be silenced. (To digress momentarily, I acknowledge that it is often possible for carers/advocates to engage legal/rights-based claims in order to pursue, and perhaps achieve specific substantive aims, e.g. access to services – but I don’t think that addresses the issue of what happens to those aspects of “voice” on which I’m focusing here. It seems possible that they become entangled with, and are casualties of, a preoccupation with the financial consequences of acquiescing to such substantive rights claims).
- If we accept this risk of “silencing” as a consequence of employing “voice” tactics on behalf of someone else (as a carer or advocate), this may shed some light on why the disruptive aspect of that individual’s “voice” may be especially vulnerable in situations where their “voice” is being represented and/or supported by another person (a carer, an advocate). As I have said, the disruptive “voice” is concerned with challenging the status quo, and with the pursuit of radical social change. It is – by definition – disruptive. And it is therefore the aspect of “voice” that arguably presents the greatest challenge to the established social order (a point that of course, has been rehearsed at length, notably in – John Berger’s writing on “The Nature of Mass Demonstrations”). So, could it therefore be the case, that for tactical or other reasons, the disruptive aspect of a person’s “voice” is the most likely to be lost in situations where the person is unable to exercise that “voice” for themselves, and is reliant on others? Given the already precarious nature of the epistemic position of the carer/advocate, particularly in the social contexts I discussed above, is it not to be expected that the disruptive, radical “voice” of a person being advocated/cared for is likely to fall by the wayside – a victim of strategy in the pursuit of other vital, tangible goals?
- And if this is the case, if our disruptive “voice” is itself vulnerable, we are left with the question – Who is going to chain themselves to railings on your behalf if you lack/lose the ability to do it for yourself?
I’m fascinated by the ethical and practical issues raised for advocates and carers by the social politics of “voice”, and I’m looking forward to developing these initial thoughts, and attempting to figure out how they might be of use to carers and advocates in understanding and strengthening their roles – both through formal research, and through ‘thinking aloud’, as I have done here. I would really welcome your thoughts on the issues I’ve discussed, along with any references that you think would develop my thinking, and my ability to articulate the embryonic concepts I’ve tried to set out above.
Thank you to Prof. Luke Clements, and to Val Hewison for providing me with such stimulating food for thought.
For Martha Albertson Fineman’s work – particularly on Vulnerability Theory – a good place to start is