I write because writing is the frayed rope that secures my tenuous grasp on the shared delusion we call “sanity”. I write because I have things to say. I write because I have marks to make on the world.
I write because I have so, so many words somersaulting over each other in the troubled, challenged, foggy recesses of my mind – and they need to find their release. They need to fly, and to land, to take root, and to trace their own silver-spun routes to their homes in the fertile minds of others.
Words are my music.
But when I speak, those tricksy words are treacherous.
They don’t play by the rules – and the effort it takes to get them out in the chop-chop, twisted syncopation of speech, then to play helpless “catch” with my hands tied behind me; as equally tricksy, piercing, bullets are fired back at my exposed flesh, is almost more than I have within me. Sometimes, it is more than I have. And the words tumble to the ground and drown in tears.
The blood coursing through my veins threatens to engulf me, and the icicle finger tips, and the desert-dry mouth rob me of connection with self-expression.
But the leaden, weighty, black-white-black of words on a page is reliable, and safe, and free, and forgiving. And it contains my home – my refuge. It silences the tumult, and makes time stand still.
The time to write is precious – those gold sovereign seconds on the clock. Such magnificently treasured currency that it can be stolen from beneath hawk eyes. It is mercury slipping through glass. It is the hovering, shivering, silver needle in the sneezing haystack of bureaucracy – of fear, and panic, and endless impatient, entitled, fist-thumping demands.
And when that happens, I lose my “self”. It slips down the plughole with the waters of stolen time. And I find I am hopeless – homeless, and helpless; vulnerable, and drowning.
But those eternally vigilant, endlessly benevolent words on the page have always proved salvation to me.
[Side note: Happy New Year! I’ve decided I’m going to try to write a blog summarizing my PhD work, and related thinking, every week. Wednesdays are traditionally my day off, so now seems as good a time as any to get going…]
Why do we obey the law?
This is probably one of those jurisprudential questions that verges on the unanswerable, perhaps precisely because there are so many possible answers. And indeed, the question of obedience to the law has been debated extensively among legal philosophers (see, for example, the edited collection of readings on “The Duty to Obey the Law” by Edmonson, 1998). My aim here is not to try to provide an answer to this philosophical question.
But I have been reflecting on what “accountability” means in the context of the Mental Capacity Act 2005: taking as my starting point the perhaps rather simplistic assumption that if a law exists, its impact should be discernible in the consequences of its observance, but also of its transgression. I.e. If you break the law, you should hold a reasonable expectation of personal consequences as a result.
As I have been working through the analysis of my dataset for my current project (a textual ethnography of research ethics application processes for research involving participants who lack the capacity to consent – engaging ss.30-34 MCA 2005), I have noticed how many times I’ve referred to the “responsibilities” of the researcher – their “obligations” and “duties”, under either the law, or other forms of professional or institutional regulatory governance frameworks. And this has led me to question the nature of these responsibilities – particularly, what happens if the researcher fails to meet their legal obligations under the MCA 2005?
It has seemed rather difficult to identify any single, universally applicable answer to this question. But here are some of my findings and thoughts so far:
Institutions sometimes refer to the MCA 2005 in their ethics application forms, but they don’t always. When they don’t do this, they direct researchers working with participants who “lack capacity” to NHS research ethics protocols. If they do refer to the law, this may be to inform the researcher (sometimes erroneously) as to what the MCA 2005 “requires”.
The MCA 2005 sets out, in general terms, what is “required” of the researcher (although it is necessary to consult secondary legislation, and additional legal and professional guidance documentation for definition and clarification).
The MCA 2005 states that research that does not abide by the requirements set out in the Act is “unlawful”. However, it makes no mention of any consequences arising directly from such illegality.
I have been unable to find any cases where researchers experienced legal sanctions as a direct result of failure to adhere to the MCA 2005.
It seems most likely that consequences of failure to follow the Act may arise indirectly, depending on the type of research undertaken, and what this involves for participants. For example, if research involving the administering of a specific treatment is undertaken involving participants who lack the capacity to consent, and the framework set out in ss.3–34 MCA 2005 are not followed, the research itself is “unlawful”. This means that the treatment administered was given without the required “best interests” process set out elsewhere in the Act, and would therefore constitute assault/battery. It is perhaps harder to think how this may apply to research that is less invasive (e.g. research involving interviewing) – although as the obtaining of “intrusive” personal data via unlawful research may be construed as fraudulent, it is likely that redress may be sought via fraud, or data protection legislation.
My analysis of the full legal, ethical, professional, and institutional regulatory frameworks that apply to researchers working with participants who lack the capacity to consent has shown that the majority of “consequences” relating to transgression of the framework set out in the MCA 2005 are to be inferred from institutional/professional regulation mechanisms that indirectly invoke the Act – e.g. Research Governance Codes of Conduct that require researchers to follow any law relating to their proposed research undertakings. As such codes form part of the studentship/employment contracts existing between the researcher and the institution, personal consequences (e.g. dismissal for gross misconduct) are likely to be swift and devastating to the researcher.
This last point reinforces, and reminds me of how important it is that I research and understand the Mental Capacity Act 2005 as a socio-cultural structure that exists within a complex matrix of social domains. In this instance, the “reach” of the MCA 2005 is perhaps felt most acutely, not in the Court of Protection, but in the university Human Resources department.
I have also been trying to identify wider consequences of failure to adhere to the MCA 2005. The Act brought with it a new criminal offense – that of “Ill treatment or wilful neglect of a person lacking capacity” (s.44 MCA 2005).
Another case of interest to my own research (that relating to Advance Decisions to Refuse Treatment) is that of Jillian Rushton: a retired nurse who received Clinically Assisted Nutrition and Hydration via a feeding tube following a brain injury, contrary to the provisions of her ADRT – seemingly due to a failure of healthcare professionals/organisations to maintain and communicate her ADRT. The case (NHS Cumbria CCG v Mrs Jillian Rushton (by her Litigation Friend) and Mr Tim Rushton  EWCOP 41) is reported here (https://www.bailii.org/ew/cases/EWCOP/2018/41.html) – though is of limited relevance to the issue of sanction for non-compliance with the Act, because as Mr Justice Hayden made clear in the judgment, he was not asked to consider matters of responsibility for failure to adhere to Mrs Rushton’s ADRT, and did not address this in the judgment.
Lastly, for now, my own ethnographic work in the Court of Protection identifies a consequence for Local Authorities of failure to adhere to an aspect of the MCA 2005 that has widely been interpreted as a bureaucratic burden for LAs – the Deprivation of Liberty Safeguards (DoLS). On more than one occasion, hearings I had planned to attend were vacated at short notice, at the request of a Local Authority that was unprepared for the hearing. However, on one occasion, the LA in question assumed the judge would agree to vacate, and therefore did not attend the hearing. This was not, in fact, the case. The judge had not agreed to the request to vacate, meaning that an (unsurprisingly short and unproductive) hearing took place, with costs being awarded against the Local Authority.
I would like to expand this list of “consequences of non-compliance with the MCA 2005” – by adding themes, and details, and by considering the impact of non-compliance from multiple perspectives.
If you have thoughts or experiences to add, please get in touch!
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:
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.
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…
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.
There are 2 more slides in this film. They explore the following questions [reads questions on slide]
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.
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)
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…
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.
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.
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.
I appreciate that you will want to provide “person-centred”
support for me, and to enable my autonomy. For me, person-centred support includes:
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?”)
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).
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?
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
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) 
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)  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
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 (firstname.lastname@example.org)
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.
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.
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,
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.
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:
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