Mental Capacity and Future Disabled “Voice”: Initial Thoughts on Disability and Advance Decisions to Refuse Treatment

Background: Disability and Medical Intervention

When I was thirteen, a doctor wanted to break my jaw.

I have multiple skeletal abnormalities due to gene deletions and mutations, as a result of which, I’ve had a long history of interactions with healthcare professionals. The encounter with the orthodontic surgeon was one such interaction.  He proposed surgery for what would have been largely cosmetic reasons, and we decided against it. I compare this encounter with what happened when I first visited my hand specialist. I was 15, and had just been diagnosed with a specific deformity affecting my forearms and wrists. After telling me about the condition, the specialist explained that as I had stopped growing, there was no appropriate treatment, He went on suggest that there had been a number of surgical treatments attempted for this extremely rare condition, that the reason for so many varied attempts was that surgeons were keen to “make their name” by devising complex surgical interventions, but that none had a strong likelihood of a positive outcome, and many had made patients’ symptoms worse. He also told me that surgical intervention was more common in the U.S. than in the U.K. – because the system of medical insurance made surgeons keener to pursue interventions that could be funded by insurance companies.

I am not concerned here with the “truth” or otherwise of these issues. I am using these experiences to set out the context that forms my experiences as a disabled person, concerning medical treatment. Encounters such as this mean I grew up with the impression that doctors were likely to propose aggressive surgical treatments, not on the basis of what might provide the best outcome for me, but on the basis of what they “could do”, or of what may be in it for them, and their career. I certainly was not encouraged to believe that I could rely on a doctor to have my “best interests” at heart, or to consider the impact of my conditions and related treatments on my life outside of their consulting room. This, along with humiliating examinations, and rooms crammed full of curious medical students, made me feel like a series of “problems” to be “fixed”.

I know I am not the only disabled person to have such formative experiences. I know that many of us have stories to tell of such oppressions at the hands of healthcare professionals. I also feel strongly that such oppressive encounters are not unique to medical environments, but rather they reproduce and echo the ways in which disabled people are viewed and treated in, and by, society more widely. Such clinically-situated oppressions manifest themselves in two ways:

  • Coercion into unwanted or unnecessary treatment, with the aim of enabling people to conform to normative expectations of cognitive, emotional, or physical presentation.
  • The withholding of treatments, based on assumptions or judgments about the “worth” of a disabled person’s life. This may include placing DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) orders on disabled people, without discussion or consent, as a result of views about the person’s “quality of life”.

My own experiences, and the culture within which I exist as a disabled person, are some of the reasons why I am passionate about autonomy and self-determination, particularly regarding interactions with healthcare professionals, and with medical systems and structures. There are lots of ways of tackling social injustices around healthcare, but it seems a good strategy to begin with the tools we already have. One such category of tools comprises the rights enshrined in existing legislation. So, for this reason, part of my PhD research (which focuses on issues around the Mental Capacity Act 2005, and its impact on the “voice” of disabled people), is concerned with Advance Decisions to Refuse Treatment (ADRT). In this blog, I am setting out my emerging thoughts about the concept of ADRT, and what it may offer for disabled people – particularly in conjunction with another existing legislative instrument: the United Nations Convention on the Rights of Persons with Disabilities (the UNCRPD).

Adults with Capacity and Treatment Refusal

As an adult with the mental capacity to make decisions about medical treatment (according to the framework set out in the Mental Capacity Act 2005), I don’t need to worry overly much about the possibility of being subjected to medical interventions to which I have not consented. The right to self-determination and autonomy for “competent” adults, with regard to the refusal of medical treatment has been enshrined in English case law – for example, in Re T (Adult: Refusal of Treatment) [1993] Family Law 93, as Lord Donaldson MR stated, in analysing the tension between the rights of the individual (to self-determination – the right to live her life as she wishes), and of the society in which the individual lives (in upholding the principle of the sanctity of life), “in the ultimate, the right of the individual is paramount” (at p.113). Concerns about the conflation of the “competence” of an individual to make a decision with her reasoning for that decision (as suggested in Re B (Adult: Refusal of Medical Treatment) [2002] 2 All ER 449 – see Stauch, 2002) have, at least as a matter of legal theory, been addressed by the MCA 2005 – in particular s.3 MCA 2005, that sets out the “process” criteria by which capacity is assessed, in conjunction with the overarching principles of the Act, stating that capacity is to be presumed (s.1(2) MCA 2005), and that an objectively “unwise” decision is not grounds for an inference of lack of capacity (s.1(4) MCA 2005).

In reality, life as a disabled person is often more complex than this. During the interviews I have carried out so far with disabled people about their views on advance decision-making, participants have told me a great deal about such complexities – people feeling compelled to accept “talking therapy” in order to maintain access to medications they believe benefits them, people who worry about losing the cooperation of doctors they rely on for medical evidence that impacts their education, employment, or access to social welfare, people who feel pressure from family members, and others close to them, who view their refusal of treatment as “giving up” or as “not trying hard enough”. So, there is obviously a lot at stake for disabled people in refusing treatments, even when our mental capacity to make such decisions is not contested. But what about if we lose this capacity? What about people in my situation – who, as a result of our experiences, fear the loss of control, and the surrendering of this control to healthcare professionals who have so far failed to earn the right to such profound, fundamental trust? Well, ahead of such a loss of capacity, a loss of control, we have an option enshrined in law – we have the right to make an Advance Decision to Refuse Treatment (ADRT)

Advance Decisions: What are they?

Advance Decisions to Refuse Treatment (ADRT) have historically been known as “Living Wills”, and, prior to their enshrining in statute in the Mental Capacity Act 2005 (the MCA 2005), they existed in Common Law. The current ADRT legal framework is set out in ss.24-26 MCA 2005, which state the following:

  • S.24 MCA 2005 (General Provisions): A capacitous person may make an ADRT after reaching the age of 18, to ensure that if in future in given circumstances, a medical treatment is proposed for them, and they lack the capacity to consent to such treatment, the treatment should not be carried out. This decision may subsequently be withdrawn while the person retains capacity, and such withdrawal need not be in writing.
  • S.25 MCA 2005 (Validity and Applicability): The ADRT will not be valid if a) it has subsequently been withdrawn; b) the person who made it has subsequently granted a Lasting Power of Attorney, giving someone the power to give or refuse consent for the treatment to which the ADRT relates; or, c) the person has done anything else “clearly inconsistent with the advance decision remaining his fixed decision”. The ADRT will not be applicable if a) the treatment proposed is not that specified in the ADRT; b) any circumstances specified in the ADRT are absent; or, c) there are reasonable grounds to believe that circumstances exist that the person did not anticipate at the time, and which would have affected the decision if they had anticipated them. There are further requirements of an ADRT relating to life-sustaining treatment – in order to be applicable, such a decision must be accompanied by a statement to the effect that it is to apply even in circumstances where the person’s life is at risk. Further, the decision must be made in writing, and it must be signed and witnessed.
  • S.26 MCA 2006 (Effects of an ADRT): If a person has made an ADRT that is valid and applicable, a) a person does not incur liability for carrying out or continuing treatment unless, at the time, s/he is satisfied that an ADRT exists and is valid and applicable; and, b) a person does not incur liability for the consequences of withholding or withdrawing a treatment from a person, if, at the time, they believe an ADRT exists that is valid and applicable.

This means that, in theory at least, I have the legal right to make provisions that ensure I don’t need to live in fear of being subjected to treatments in circumstances where I lack the capacity to give or withhold consent. I don’t need to worry about doctors wanting to “make their name” with my body, or to make money through treatments that are unlikely to make me better, and that might make my prognosis worse. Such fears don’t need to dominate my life. There is lots of discussion about the metaphysical dilemmas surrounding the concept of ADRT, as a mechanism for “present me” making decisions for “future me” – and whether I would be the “same person” in future, if I lost capacity (see, for example: Dworkin, 1993; Dresser, 2018). But for me, the scenarios I’ve set out here illustrate a key contemporaneous value of the concept of ADRT for me, as a disabled person – in that they give “present me” rights to live, at least in theory, free from fears about what might happen in my future.

Theory and Practice

There is a lot in the analysis I have presented here that applies “in theory” – with rights set out in the “black letter of the law”. However, as in most areas of the law, the situation in practice is considerably less clear. Despite the possibility for ADRT to confer legal rights that are likely to be especially beneficial to disabled people, there are also several complexities to address:

  • How do disabled people approach the concept of refusing treatment within a social and cultural context that controls the giving and withholding of medical treatment based on a set of values that views us as “lesser” than abled people – that makes judgments about our worth, and our “quality of life” based on ableist assumptions and expectations? (This is the focus of the “legal consciousness” study that forms one of the chapters of my PhD).
  • How do the rights of disabled people to exercise their legal capacity to refuse future treatment exist alongside those of abled people? Particularly, given the existence of a wide range of conceptual and practical problems impacting the population as a whole; with regard to access, uptake, and implementation of ADRTs, what are the best ways to approach these issues for disabled people? To what extent is it appropriate to argue for better access to ADRT for the general population, while ensuring that disabled access forms part of this overall agenda? And what “special” protections and affordances might be offered by tools and strategies that relate specifically to disabled people, and the culture of oppression that affects us uniquely (such as the relevant provisions of the United Nations Convention on the Rights of Persons with Disabilities)? This forms the basis of a separate but related doctrinal analysis on which I’m currently working.

It would be great to hear of any thoughts people might have on these themes. In particular, I am keen to hear from disabled people about our experiences of refusing medical treatment (including those relating to mental ill-health), and of attempting to make ADRTs, or supporting others to do so.

You can contact me via the contact page on this website, via Twitter (@loomesgill), or by email (lwgl@leeds.ac.uk)

If you would like to find out more about Advance Decisions to Refuse Treatment, check out compassionindying.org.uk – or to access a template to plan your own ADRT, visit mydecisions.org.uk.

Poem: The Telling of Riches

My worth is not to be teased out in the sum of my earnings

Judge it instead, by the contents of my bookshelves

By the thoughtful seedlings

That I collate and curate

Nurture and germinate

Budding into leafy life

On rooted branches

Know me by the prose and poetry

That feeds the fertile field of my mundane existence

The blooming, sensual buds that pepper my soul

With erotic wickedness

Know me by musicking fabrics

Those collages as flighty as birdsong,

As winged hopes posing side by side

On leaning branches

She is to be trusted

Who lines the heart of her home

With an armoury of intellect

Who fashions from the fragile triumphs

Of another’s best endeavours

A virtuous fortress

Mounted on the head of the mountain

She is generous, who,

As her fortress rests

On the rhizome of its foundation

Beckons you across the threshold

She who sits

Who shares

And who grows with you

Until, with the seasoning, seasoned waters of time

You are

Both the richer

“Reasonable Adjustments” for #AutisticsInAcademia: The Community Speaks…

I made a request on Twitter for people working or studying in academia to share what adjustments or accommodations work to make things better for them. As usual, #AutisticsInAcademia came through, and made some great suggestions. I’ve compiled them into a list below.

You can find the original thread (including some wider discussion of relevant issues) here: https://twitter.com/LoomesGill/status/1147086537210904576

You can follow me on Twitter @Loomesgill

And you can keep in touch with autistic people working/studying in academia internationally via the hashtag: #AutisticsInAcademia

Here are the things that #AutisticsInAcademia have found useful:

  • Having someone outside of the institution to provide advice and support.
  • Attending meetings and events via video-conferencing.
  • Clear expectations.
  • Captions for video/audio.
  • Option to work from home.
  • Following things up in writing, as verbal instructions/discussions can be forgotten.
  • Using (noise-cancelling) headphones in open-plan or shared offices.
  • Working part-time.
  • Using lamps instead of strip-lights.
  • Having a designated desk, rather than hot-desking.
  • Context and detail when people ask questions.
  • Having unspoken/unwritten rules written down.
  • Flexible working.
  • Having a mentor.
  • Mental health support.
  • Access to quiet space.
  • Autism training for colleagues.
  • Prior notice, and support during changes.
  • Warning about any noisy/crowded events on campus.
  • Accessible parking.
  • Support with admin and form-filling.
  • Recording meetings and classes.
  • Completing work orally, rather than in writing.
  • Access to a note-taker.
  • Access to pdf documents to read with screen-reader.

Do you have any further suggestions? Or any comments about being #AutisticsInAcademia? Feel free to respond in the Comments Section. I’ll update this article periodically to expand our discussion.

Roundabout

Get up, fall down

Get up, fall down

Metaphors of the Fight

Resonate right now.

Two steps forward; three steps back

Repeat ad nauseum

It hurts:

To fail

[Intransitive verb] “To stop functioning normally”

To be  

The embodiment of defeat

To claim Descartes as self-defence

Body-mind, body-mind

But where am I?

To disappoint

[Transitive verb] “To fail to meet expectations”

As childish moral inculcations

Crumble

Defeated edifices

Before beaten eyes

To surrender

[Transitive verb] “To give up completely”

To let

Teardrops punch pillows

With angry fists

The release

Of hostage frustrations

To rage

Against the dying of intellect

Against the theft of corporeal liberty

Breeze in sweeping hair, water on grateful skin

Sensual freedom

Robbed before sleeping eyes

Collect your self

Start again

Reshape your self

Repair exposed, wounded gaps

I will not give up

I will not give up

I will not give up

I will not

Give up

Da capo ad finitum

Book Review: Sword, H. (2017) “Air & Light & Time & Space: How Successful Academics Write” Cambridge, Mass. Harvard University Press

I adore writing … mostly.

I find my “voice” through writing, in a way that’s beautiful, delicious, self-expression … except when it isn’t.

When it’s “right”, it’s pure exhilaration, it’s something approaching orgasmic – erotic, as when “work becomes a conscious decision – a longed-for bed which I enter gratefully, and from which I rise up empowered (Lorde, 1978). It’s pure artistry which I, as a person for whom speech, though mostly achievable, comes with the neurological energy demands of an almost-though-not-quite-fluent second language, value hugely.

When it’s not “right”, however – when my thoughts desert me, when the mists descend and I can’t see the words for the trees, or, more usually, when I feel so pulled in multiple other directions across the expansive terrain of my life that I lack the ability – or, the “air and light and time and space” to immerse myself in the poetry of ideas, and the music of words, it’s torturous, unfulfilling, unforgiving.

And I’d love to be able to increase the “right” – to make it more trainable, more controllable, more malleable – less “wild stallion”, more … not “dressage” exactly, but perhaps the powerful, enthusiastic, harnessed energy of riding across country – reaching your destination, but also enjoying the ride.

The trouble is that I’ve never been good at being “taught” to write. It’s just been something that I “do”, and every time anyone has attempted to teach me, or I’ve searched books for ideas on “how to” train this aspect of me, the end has been hot, angry frustration as I attempt to (or feel pressured into) twisting my reluctant, stubborn brain into the mental gymnastics required for me to think, and work, like someone else.

There is one exception to this that I remember clearly – one of my junior school teachers used to set a weekly writing exercise, whereby he gave out a topic or title on the Monday of each week, and on the Friday morning we had to write a piece based on the topic. This was just delightful – a chance to indulge in playing with words, and making music using the melodies I acquired through voracious reading, and a chance to excel at a personal passion. It was also purely generative, as the odd suggestion over the shoulder led to an improved lexical choice, or a grammatical or syntactical improvement – clearer communication and sharper expression of my ideas. However, with this exception, all other experiences of education on writing have resulted in nothing but frustration, angst, brutality, and a host of murdered darlings.

I had reached the conclusion that my approach to writing is too idiosyncratic, – more (uncontrollable, or at least, uncontrolled) magic than craft – and too sporadic and reliant upon the capricious will of my own mind to be susceptible to aid and structured improvement.

Then recently, I discovered this book.

Helen Sword has produced exactly the guide to academic writing that I needed. And she has done this by not really providing a “guide” at all – but rather an empirical study of the writing habits of academics across disciplines, and around the world.

Taking its title from the poem by Charles Bukowski, the book speaks to the image of a suffering-yet-productive artist, as a model relating to academics, and asserts that there is no point in waiting for a perfect space in which to create – as creativity will emerge in the most trying of physical, personal, and social circumstances (not sure quite what Virginia Woolf would make to this? But then, who’s afraid of Virginia Woolf?).

The central thesis of the book is the development of a “BASE” model, which Sword uses to articulate the tools necessary to build your own personal, virtual “House of Writing”. BASE encompasses the following 4 areas of focus:

B – Behavioural Habits

A – Artisanal Habits

S – Social Habits

E – Emotional Habits

These are explored in their own chapters, by reference to a considerable empirical study on which the book is based (see what I did there?) The empirical work is outlined in detail in the introductory chapter (itself a beautiful meta-model of how to write about methods in a way that is accurate, clear, and engaging). Sword explains how she undertook two forms of data collection, with a view to demonstrating the contrasts between two different, clearly demarcated categories of academic writer – (1) “Exemplary academic writers” chosen by Sword, and interviewed in-depth, and on-the-record, and (2) “Lesser-known academics from underrepresented cultural, ethnic, and gender minorities who have survived, and even thrived, in academe” who had signed up for, and attended Sword’s writing workshops, and were asked to complete an anonymous questionnaire (n = 1223: faculty members, PhD students, postdoctoral researchers, and independent scholars).

Sword explains that she had assumed she’d be able to make authoritative claims based on her data, about the writing habits of successful writers, and how these compared and contrasted with those of less confident writers, who identified themselves as in need of support (and therefore signed up for a writing workshop); as well as being able to draw conclusions about the different writing practices of, for e.g. different genders, different geographical/cultural demographics, different academic disciplines. She quickly found, however, that rather than identifying such patterns in the writing practices of her respondents, she was “struck by the richness of their difference”, in a way that is highlighted acutely in this account:

“The futility of such scholarly typecasting struck me with particular force on the day I interviewed two colleagues who work in the same discipline and had recently been awarded the same prestigious research prize by the professional society to which the both belonged…they matched each other as closely as any other two academics in my interview cohort. Yet their personal affects and attitudes towards writing could hardly be more different. One was self-confident, the other self-effacing; one was earnest, the other ironic; one clearly loved to write but spoke mostly about the agonies of writing, while the other clearly struggled to write but spoke mostly about its pleasures.” (Sword, 2017: 3)

Rather than shoehorn her data into an awkward “how-to” of academic writing practices. Sword therefore presents a wide-ranging discussion on the numerous, often resourceful, sometimes dispirited and stodgy treacle-wading ways in which academics at all levels, in all areas of academe negotiate and engage with the affordances and contingencies of writing within (and often in spite of) academic and personal lives.

I found this book a joy to read. It was so heartening to feel that I wasn’t alone – and that it isn’t only other PhD students, but writers of all levels of experience, at all stages in their careers, who experience many of the same highs and lows that I do, and who deal with their own successes and adversities in a huge range of ways. It was fabulous to have it affirmed that there is not necessarily a black/white, right/wrong dichotomy in writing practice, but rather that writing, as a craft, is best undertaken in whatever seem to be the best ways that suit the circumstances in which the writer finds herself.

At times, I found myself encountering a familiar sensation that some of my own (dis)abilities, and encounters of adversity and oppression (particularly as an autistic, disabled writer) were missing from the accounts in this book: an omission that was particularly noticeable, given the focus built into the book’s methodological approach, on the experiences of writers from other minority groups.  This was disappointing in terms of Sword’s (self-identified) aims of representation of diversity, but it didn’t necessarily impede my engagement with, and enjoyment of the book, because I also got a huge amount from the areas and experiences that were covered. I feel that this is simply an argument for more, pluralistic, discussion of the craft of academic writing – discussion that is rooted in, that takes as its starting point, and that engages analytically with, empirical accounts of practice. Writing is so often portrayed as a mysterious, secretive, veiled practice – or as a “talent” that you either have, or you don’t. This book really lifts the lid on this practice. It won’t provide you with a “House of Writing”, but it will begin to provide you with the tools to find the “air and light and time and space” with which to build your own.

I would recommend this book to anyone who, like me, finds their “voice” through (academic) writing.

In Search of Radical “Voice”: Identity, Advocacy, and Anti-Discrimination law.

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 [2007] 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 [2014] 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:

  • Identity-building
  • Self-determination
  • Self-expression
  • Social participation
  • Advocacy
  • Disruption

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

Fineman, M. A. (2008) “The Vulnerable Subject: Anchoring Equality in the Human Condition” Yale Journal of Law and Feminism 20 (1)

Finding my Voice

Welcome to this, my first post.

It’s always a challenge to battle the fear of the blank page, but I’m going to do that here by sharing some thoughts about one of the ways in which I have found, maintained, and developed my “voice” throughout my life. 

I am autistic. And as is commonly accepted, being autistic implies a difference in communication and social interaction – and difficulties in communicating in an unsupportive social environment. This means that we sometimes find our own creative, diverse ways of expressing ourselves.

For me, this has always been music.

There are several ways in which I could tell this story – several scripts that I could articulate. I could take the ‘autism script’ wherein everything I say relates to my experiences of autism. But this is problematic, because a significant part of the story is about how one expresses an identity that is not part of the mainstream, and is often thought of as ‘deficit’ or ‘deviant’. How one speaks without having access to the words to explain this identity. Or, I could tell the ‘music story’ – about the wonderful properties of music to help someone with a disability to express themselves. But that’s not right either, because music is not the right thing for all disabled people. For some, it would be absolutely impossible or intolerable. So the script that I’m speaking from is the one that helps me to explain a way in which an autistic woman developed her “voice” and began to tell her own story.

I will pick up the story in junior school, where music lessons and instrument loan were available without cost to a given number of pupils. I don’t remember the process that led to me being one of those pupils, but I do remember being given a choice as to which instrument I would want to learn. I chose the trumpet. I am very clear about my reason for choosing this – it was very deliberate. I chose it because ‘girls don’t play the trumpet’ – the other girls played flutes, clarinets and violins. I wanted to play the trumpet. I didn’t understand the other girls, I didn’t feel any affinity or connection with them and I felt I was failing miserably at being one of them. That isn’t to say that I felt any more in common with the boys, but then there was no expectation that I would. So I chose to play the trumpet as a way of setting myself apart from something that I couldn’t do, and couldn’t be – and finding a different sound, a different “voice” – a “voice” that I felt wasn’t expected of me. No expectations meant no pressure. I could express myself as I wanted.

When I was eleven, I began playing the piano. To be more accurate, I fell absolutely head over heels in love with playing the piano.  I had formal lessons and passed all the exams, but mostly I played, and played, and played. In particular, I used to play during lunch times at school. The school had a large hall, which was otherwise empty of people, but where I was allowed to play the grand piano. I used to go there on most lunch times to escape what felt like the pain and hostility of unstructured social time with peers – and was undisturbed except for the occasional person, usually members of staff, who would pass through the hall and, if they talked to me, would talk about the music. So I found a “voice” that could resonate with those around me, and this opened up the possibility of more than just self-expression. It brought with it an aspect of interaction that I could understand, and undertake with a degree of competence that was often absent in other forms of interaction that were expected of me.

So, clearly for me, music was about rejecting scripts that felt painful and uncomfortable (‘you do “being a girl” this way’), writing my own scripts and finding a “voice” that was achievable for me. However, music is in itself a script – and accessing this script is a way of connecting with the world. In this sense, it matters that it was the folk and traditional music around me that stood out to me as most meaningful and most appealing. And it matters that it is this script as opposed to others (other musical genres – classical, jazz etc) that has given me a “voice” in the social world around me.

The thing about singing traditional/folk songs is that they are social scripts. They are ways of telling what it is to be human in the social world – and they belong to everyone, and they belong to no one. This means that when I sing them, my voice is joining in with an ongoing act of carrying and shaping social scripts. I sing songs that touch on the whole range of human emotions – love, sex, anger, hurt, jealousy… I can express these emotions to the world, without needing to disclose how they relate to me. This is a big deal for someone who grew up without access to the words to explain myself. When I sing, the script is already written for me, I just have to claim it. Likewise, I can sing protest songs that bring into the foreground power and marginalization; that tell stories of those to whom society has denied a “voice”– I can connect with that, without needing to put ‘autism’ and all the assumptions that go along with that word up front as the explicit reason why I connect. I focus on the experience, and on shared experiences and common ground with others. I sing in folk clubs and festivals, where those around me know the script – where it’s their script too, and they join in, and we share. I also sing in other spaces, where these scripts are unfamiliar – in pubs and other social environments where my voice performs an act of bearing witness, and a way of enabling others to connect with the complexities of the human condition.

It would be wrong to assume though, that in order to access the scripts that form social identity one needs words. For me, dancing is a way of connecting and self-expression too. When I clog dance using steps collected and passed on from others, I’m aligning myself with the scripts of those who have gone before me – the (mainly) women and girls who danced in mills in the valley where I live, the music hall ‘stars’ who sought to bring pleasure to others and to achieve acclaim themselves – and those dancers before me who have recognized that those steps were something worthy of doing, and of saving.

And when I freestyle, barefoot at home, in a pub or at a festival –to music in my head, on a CD or with people playing music just for me, I don’t need a script to find my “voice”. My body just feels the music. It’s a purely sensory delight, a moment of absolute liberation – and we all need those.

So throughout my life, music has enabled me to find my “voice” – to express myself, to interact with those around me, and to connect with the “voices”of generations that have gone before me.

With, or without a script – with, or without words

Music is a powerful “voice”.