Introducing Project Evaluation: How can it help our voices to be heard? [Video + Transcript]

Alongside my academic research and other arts and activism, I work for an advocacy organisation in Leeds called Advonet. Part of this role has involved being a work-based evaluator for a very exciting endeavour – the Leeds LGBTQ+ Health Inclusion Project. This is a project that uses self-advocacy/peer support, and the training of healthcare professionals to address the exclusion and inequalities experienced by members of LGBTQ+ communities who have “additional needs” (i.e. who are autistic, have a learning disability, and/or who experience mental health difficulties).

My role as evaluator involves observing the project as it develops – sitting in on self-advocacy workshops and training sessions, and talking to project staff, and participants, to find out what they think about its achievements. In order to do this, it is essential that I am able to build a rapport with all those involved with the project, but I’ve found a problem with this, as it’s been difficult to communicate what my role involves. This has meant that project staff are unsure how to introduce me, and people are slightly concerned as they don’t know what to expect from me. This is especially challenging, given the personal, sensitive nature of much of the discussion that takes place in the workshops and training sessions. I needed to come up with a way to communicate what I’m trying to achieve.

Alongside this, I’m keen to start a conversation within the voluntary sector more widely – to discuss how we evaluate ourselves: how we celebrate our many achievements, and how we make our work even better.

So – I came up with the idea of making a video presentation (using PowerPoint and YouTube), in order to communicate my ideas around project evaluation – and, particularly, how we might use evaluation as a tool to ensure that all those involved in our projects and partnerships have the opportunity to have their “voice” heard in taking the work forward.

This style of presentation/communication itself is a work-in-progress. Things I’m aware of so far include the fact that the video is too long overall, perhaps because I’m communicating to multiple audiences. I think it may be difficult to hold people’s attention for so long. I’m also aware that in places, the text on the slides doesn’t sync with what I say in the audio. This is because as I was figuring out my working method, I edited things considerably. In future, I think I’ll be much clearer about what I’m doing, and about how much content I’ll be aiming to include altogether, meaning things will be much more fluently presented.

I’d really like to know how else I might develop these kinds of communication tools (both conceptually and technically).

Here is the video. I’ll copy the transcript below:

Transcript

Slide 1

Introducing Project Evaluation: How does it help our voices be heard.

Welcome to this short film, providing an introduction to project evaluation– and explaining the evaluation of the Leeds LGBTQ+ Health Inclusion Project.

This film is for anyone involved with the project – including project facilitators, peer supporters, self-advocates, and funders; along with anyone interested in carrying out project evaluations for other, similar, projects.

A transcript of what I am saying is available in the “notes” section of the PowerPoint file, or in the description box below the video, if you’re watching on YouTube. If you have any questions, contact details are provided at the end of the film – feel free to get in touch.

Slide 2

Hi,

I’m Gill Loomes, project evaluator for the Leeds LGBTQ+ Health Inclusion Project.

As a disabled person, I care about disabled voices being heard, and as a researcher, I want to use my skills to make that happen.

In this short film, I explain what project evaluation is, particularly how it’s being done at the Leeds LGBTQ+ Health Inclusion Project, – including how you can get involved, and how it can help us to be heard…

Slide 3

The word “evaluation” can have different meanings. But, in broad, simple terms, it means something like “checking the progress or merit of a thing, according to agreed standards”. When it comes to projects like the Leeds LGBTQ+ Health Inclusion Project, this is often thought to mean checking whether the project is delivering “value for money”.

You might think that the process of evaluating a project, such as the Leeds LGBTQ+ Health Inclusion Project, sounds like a rather boring job, that produces pages of words and numbers that no one will ever read. Or you might see it as obligatory – something we have to do, in order to keep the organisations that fund our projects happy. And it is often the case that funders require projects to evaluate their progress – for example, the Leeds LGBTQ+ Health Inclusion Project is funded by the Government Equality Office, which requires all projects that it funds to provide evaluations – in order to check how funding is being spent, and also to provide information that might be useful to other, similar projects.

But, depending on how it’s designed and carried out, a project evaluation can serve another important purpose – one that should matter a lot to advocacy, and self-advocacy organisations: a project evaluation can be an opportunity for all those involved in the project to have their say, and to have their voice heard – about how the project is run, about the difference it makes in society, and about what is working, and what is not working.

In this way, an evaluation can be an opportunity to promote equality within a project, and to ensure that everyone’s voice is heard. As it says here – [reads quote above from House, 1993]

So, let’s take a look at how a project evaluation can work – and how the evaluation of the Leeds LGBTQ+ Health Inclusion Project aims to ensure that the voices of everyone involved in the project are heard.

Slide 4

There are 2 more slides in this film. They explore the following questions [reads questions on slide]

Slide 5

So, the first question we are going to think about is “What is Project Evaluation – and how can it help our voices to be heard?”

We can think about what an evaluation is by answering 3 questions:

How (is the evaluation done) – an evaluation looks at something systematically – that is, it’s organised, and happens according to a plan.

What (does the evaluation do) – it produces information about a project, and the effects of the project.

Who (is the evaluation for) – anyone who is interested in the project; how it works, and how it can be improved. 

We can think about what an evaluation considers:

Project goals: How has the project met their goals? Have their goals changed in response to the priorities of project participants?

Decision-making: How does decision-making happen within the project? Is it efficient? Who gets a say in important decisions? Who is responsible for making sure things get done?

Different explanations: When evaluating a project, how do you ensure that different views about the project and how it works are represented?

Different users: When planning what questions to ask in an evaluation, think about who is going to use the evaluation. What do project participants need to know about the project? What do project funders need to know? How do you ensure you ask, and answer the right questions?

And we can think about what is important to make sure that an evaluation helps voices to be heard:

The evaluation must be responsive to the needs of project participants.

It can be goal-flexible, ensuring that different goals prioritized by participants are represented.

It ensures that alternative explanations and perspectives are represented and explored.

And it considers the needs of all users of the project, and the evaluation.

On the next slide, we’ll see how the evaluation of the Leeds LGBTQ+ Health Inclusion Project considers each of these things in its evaluation.

Slide 6

The LGBTQ+ Health Inclusion Project works to improve access to healthcare services for members of LGBTQ+ communities who are autistic, who have a learning disability, and/or who experience mental health difficulties. It does this by organising self-advocacy courses, and peer-support for members of these communities, and by offering training, designed and delivered by people with lived experience of these issues, to healthcare professionals.

The Government Equality Office, which provides the funding for the project , needs an evaluation of how the project works, and what it achieves. It needs to be able to show how public money has been spent.

The evaluation also provides an important opportunity for participants to have their say about what has worked, and what they might do differently.

And we also hope that the evaluation will be useful to other people and organisations looking to set up similar projects, so that they can learn from our experiences.

In order to provide information about the project that will be useful to all the people who are interested in the evaluation, and to ensure that we provide all the information that is needed, the evaluation is in two parts: An independent evaluator (called Tia) will look at the project from the “outside”, focusing mostly on how the project has achieved the goals it set out to achieve.

Alongside the independent evaluation, I am undertaking a work-based evaluation to give participants an opportunity to have their say about their experiences of the project.

If you are involved in the Leeds LGBTQ+ Health Inclusion Project, you might well come across Tia and me at some point. We may pop into a workshop you are involved in – this is to see how the workshops run, and to look at what works well, and what might be organised differently. And it is to give people an opportunity to describe their experiences with the project.

A word about what evaluation is NOT:

It is NOT to record details of discussions that are taking place, or to “check up” on anyone involved in the project – and anyone involved in the project with any questions or concerns should feel free to speak to Tia or me, at any time.

Contact details for me, and for Advonet (the organisation hosting the project) are on the next slide)

Slide 7

Thank you for listening to this short film. Please feel free to get in touch about the evaluation, or about the Leeds LGBTQ+ Health Inclusion Project itself.

Thanks so much for checking out this blog – I’d love to hear your thoughts about communicating ideas, research findings, evaluations, anything…

Support and Self-Advocacy: How to Meet a New Support Worker

I’m quite used to being supported by support workers/PAs in different capacities – having had educational and employment support in different forms for the last 20 years or so. I’ve also BEEN a support worker. However, no matter how “used to” it I get, I still find the initial meeting with a new support worker – or rather, a worker in a new role, challenging and extremely anxiety/panic-inducing.

I’m not too sure to what extent this is impacted by my autism – I suspect my autism plays at least a contributing part in my discomfort, given that what I struggle with most is interacting with a “new” person. It just generally feels like I don’t know what to expect – what the person will say, how I might respond, what comes next etc – without having “learned” how a person communicates, I find it extremely difficult to predict what they might say in any given context, meaning I can’t prepare or “rehearse”, as I would before meeting with someone I know. However, I’m fairly certain that many people (autistic or not) would find being supported for the first time, or in a new context, challenging – so I hope that this blog might help.

Today, I met a new PA at uni. This is a different kind of support, to add to that which I already have in place, so I was very apprehensive. What we did during the session was to put together a list of things that it’s useful to know, in order to support me effectively. This list is not exhaustive – because of the nature of support work, you often have to work with lots of people, who only get to meet you at short notice, and it’s difficult to get information to your team in advance. So it’s important that the list is something that can be given to the worker at the start of the session, and that they can look through quickly without being “over-faced”. So the list prioritises things that someone needs to know as soon as they meet me – taking into account that at this point, I’m likely to be extremely anxious, and not as competent at verbal communication as I ordinarily am. Other things I can explain as I get to know each support worker over time.

I’ve also prioritised putting in writing aspects of my preferred support that go most against how support workers are trained, and what is perceived as “good” support (for me, the clearest example of this is the fact that I prefer support workers to make suggestions about what we might do, that I’m happy to agree or disagree with, rather than them leaving this totally up to me). I’ve found in the past that people can feel very uncomfortable with (what they perceive to be) “taking control”, so putting in writing that this is what I need in order for me to make autonomous decisions from the beginning can give “permission” for them to work in a way that is truly “person-centred” for me. For this reason, it was really helpful to make this list along with one of my support workers, in order to get her input about how support workers are trained, and what is expected of them.

I’ll have copies of the list with me at the start of each support session.

I’m reproducing it here, in case it helps anyone else to communicate with new support workers, or lessens their anxiety about doing so:

Introduction for New Support Workers

I’m Gill Loomes. I’m a PhD student – I have multiple physical disabilities and autism, and I’m a wheelchair user. Here are some things that it’s helpful for you to know, in order to support me.

Meeting:

  • It’s best to meet me in Disability Services. I’ll try to wait in reception, but I might need to go to the Quiet Room. If I need to go to the Quiet Room, I’ll let whoever is at the reception desk know that this is where I’ve gone.
  • As I’m autistic, I often experience extreme sensory overload and “panic” when meeting someone for the first time. This means I might not look at you, I might flap my hands and tap, and/or I might struggle to speak, and stutter. When this happens, it helps me if you give me time and plenty of physical space. If you want to talk to me, it helps if you start with my name (I prefer “Gill” to “Gillian”) in order to get my attention. Please DON’T try to finish my sentences for me.

Being Person-Centred:

I appreciate that you will want to provide “person-centred” support for me, and to enable my autonomy. For me, person-centred support includes:

  • I find open-ended questions very overwhelming and demanding (e.g. “what shall we do today?” “where do you want to go for coffee?”). It’s better if you give me a yes/no, or either/or choice (e.g. “Are we going straight to the library, or are there other things to do first?”)
  • As a PhD student, I mostly need physical support in writing up my thesis. I can tell you exactly what to do. I just need help with skills requiring fine motor co-ordination and arm mobility (e.g. typing, using mouse etc).
  • Please can you prompt me to take short breaks? – Approx. every 20 mins

Thank you very much.

Hope you find this useful.

I’d be interested to hear how other people get on with working with new support staff – or how support workers feel about meeting new people. What have you found effective? What is best avoided?

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.

“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

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)