These are tough times, with most of us reeling from the impact of Coronavirus. And with businesses, schools, and universities closing their physical premises, the supermarket shelves emptying, and plans being cancelled, we’re facing a disturbing present, and an uncertain future.
And for some members of our autistic community, the future is particularly daunting.
Many autistic people work as self-employed speakers, trainers, and other forms of autistic advocate. They perform a role that benefits all of us – autistic people, parents/carers, teachers, and health and social care professionals; and all who love and care for autistic people. But with conferences and events being cancelled, and schools and other venues closing as a result of the ongoing COVID-19 emergency, they are facing a devastating cut in their livelihoods.
And we want to do anything we can to ‘give back’ to these members of our community.
So, we’re setting up a fund – The Autistic Mutual Aid Fund – with the aim of making life just a bit easier for our autistic advocates at this challenging time [Please note that the organisers of the Fund will not be eligible to claim from it].
The Autistic Mutual Aid Fund is for autistic people who are self-employed, working in the field of autism advocacy (broadly defined), who are facing significant financial losses as a result of the COVID-19 outbreak, and its impact.
It is intended to provide a ‘Helping Hand’ – covering relatively small, discreet costs incurred by people in this position. It is NOT intended to replace all, or most of the income lost; or to cover all of the outgoings of self-employed autistic advocates – a)because this is the role of the government; and b) because the fund is likely to be quite small-scale, and capable of making only small discretionary grants.
Examples of things that may be covered by grants from the Fund include, but are not limited to:
Costs of taxi travel where travel on public transport is not possible for either autism- or virus-related reasons; costs of equipment or software etc to move business online, and advertise new services; contributions to specific household/utility bills; costs related to maintaining autistic equilibrium in challenging times (e.g. purchasing specific groceries for restrictive diet, purchasing/replacing stim toys, replacing specific toiletries, or other sensory-related products that run out during period of income-loss.
Other requests will be considered at the Organisers’ discretion.
More about the Fund:
At the current time, it is uncertain how many donations the Fund will attract, and over what period of time. If the Fund proves self-sustaining, it is possible that there will be scope to continue it beyond the period of the COVID-19 outbreak, and perhaps to broaden its scope.
Given the level of current uncertainty, it is possible that other, larger funds may emerge, with overlapping aims to this one. In such circumstances, the organisers retain the right to close the Autistic Mutual Aid Fund, and to donate any remaining balance of donations to the similar, larger Fund. All applications to the Autistic Mutual Aid Fund will be considered by the Organisers (Gillian Loomes and Shona Murphy), and granted at our discretion. Nothing in this publicity, or in the application survey, constitute an offer of a grant.
The maximum amount of any single Helping Hand grant will be £100. It is possible that this may be revised in future, depending on the status of the Fund. However, we ask applicants to bear in mind that this is likely to be a small fund, and is intended as a gesture of support and ‘good will’ to make lives just a little bit easier in challenging times. We ask you to respect this gesture, by a) being thoughtful and sensible in the requests you make of the Fund; and, b) being understanding and respectful if the Organisers need to turn down your application for any reason.
Who are we?
Gillian Loomes Gillian Loomes is an autistic scholar-activist. She held a teaching fellowship at ACER (the Autism Centre for Education and Research), University of Birmingham for several years, and has experience as a research consultant; including for the Autism Education Trust, the International Disability Rights Monitor, and the Essl Foundation. Her recent publications address topics relating the autism as social identity, ‘autistic feminism’, and the role of research participation and collaboration within the politics of disability rights. Gillian works for Leeds Autism AIM, and is a convenor of PARC (the Participatory Autism Research Collective). She tweets regularly, and can be followed @loomesgill.
Shona Murphy Shona is an autistic autism trainer. She has an MA in Autism, where she researched autistic parenthood, and also does consultancy in autism research, supports autistic people, and does a variety of voluntary work supporting and advocating for autistic people.
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 (email@example.com)
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.