#AutisticPhDiary 2 – Refusal of Medical Treatment, Advance Decisions, and Disability Justice

Week Two: 1st June – 7th June

This has been a very busy week!

I submitted my Examination Entry form this week – which is the paperwork in preparation for the submission of my thesis, and my viva. It’s all feeling very “real” now.

My PhD work this week has continued to focus on the chapter analysing the views of disabled activists on advance decision-making. I have been writing about the right to refuse treatment on which the concept of the Advance Decision to Refuse Treatment (ADRT) is based. Legally speaking, the right of a “competent” adult to refuse treatment is clear-cut and established in case-law (see, for example, Re. B (Adult: Refusal of Medical Treatment) 2002 2 All ER 449); however, as my data shows, in reality the process of refusing treatment is often experienced more accurately as a “bargain” with healthcare professionals, where inequalities of knowledge and status, as well as concerns about the long-term consequences of refusal may compromise a person’s access to this right. Some of my interviewees reported being seen as disruptive, or the ending of relationships with specific consultants as a result of their attempt to refuse treatment offered. I see this part of my analysis as contributing to my attempt to highlight the specific context in which disabled people approach the subject of advance decision-making – with experiences of treatment-refusal, and its consequences, being things with which my interviewees were very familiar. I have found that the activists I spoke to were supportive of the right to refuse treatment, even though their experiences in practice were often not so clear-cut.

This week, I also had the pleasure of being interviewed by Alex Ruck-Keene (a barrister at 39 Essex Chambers, who specialises in Mental Capacity law) as part of his Lockdown video podcast series. This was a great opportunity, for which I chose to talk about my research on Advance Decisions and Disability Rights. You can see my interview from Alex’s website here. In the interview, I talked about how challenging it can be, and the tensions that can arise when individual adults make (advance) decisions that may be understood as invalidating certain types of disabled existence. I set out my view, that no decisions are made in a social vacuum, and that both disability rights, and the right to individual autonomy are key political concerns that need to be pursued and protected. I feel strongly that the liberation of disabled people from stigma and discrimination should not come at the cost of oppressing people who make medical decisions for themselves that we find challenging. This discussion was particularly timely given the judgment handed down this week in what has been widely referred to as the “Stoma Case” – Barnsley NHS Foundation Trust v MSP [2020] EWCOP 26 (1 June 2020). The case concerned whether it was in the best interests of a man to continue receiving clinically-assisted nutrition and hydration. He had previously made an (invalid) Advance Decision, indicating that he would refuse treatment that would lead to him living with an irreversible stoma (he had prior experience of a temporary stoma). In deciding that it was in the man’s best interests to honour his wishes, expressed in the invalid Advance Decision, the judge was careful to emphasise that this was about respecting an individual decision, rather than a value-judgment about the lives of other people who live with stoma. You can read the judgment in full here.

One aspect of the role of the Advance Decision in this case that I find particularly interesting is the fact that in refusing an irreversible stoma, MSP was in fact refusing treatment of which he had some prior experience. It is a common view among disabled people, and was one expressed by the activists I interviewed, that life with disability is something that one can “get used to”, and that the reason behind many ableist assumptions about the quality of life of people with impairments is a lack of knowledge, or experience of life with those impairments. However, in MSP’s case, he wished to avoid the consequences of a treatment with which he had previously lived. This is similar to my own experience of making an ADRT, as one of the treatments I refuse is a treatment I have previously experienced, and which I found so horrific that my reasoning for refusing it in advance is not so much concerned with the consequences of receiving such treatment again in the future, but rather with the improvement to my quality of life in the present time, of knowing that I will never be in a position to have this treatment inflicted on me in future, and not be able to protect myself by withholding my consent. In this sense, I feel that while the concept of ADRT is generally considered to be future-oriented, it can also have a strong contemporaneous value to the person making it.

In other news, I was pleased to learn that an abstract I submitted for the Society of Legal Scholars (virtual) conference 2020 was accepted for the Practice, Profession, and Ethics stream of the conference. The title of my paper is “Seen to be done? An exploration of the role of the Court of Protection Transparency Pilot in advancing Disability Justice”, and it builds on my research as a public observer in court to advance an argument for the role of “transparency” in disability politics. The conference will take place 1 – 4 September, and more information is available here.

Life in General

Life is busy as always! I am working hard, preparing resources to deliver Autism Training online to mental health professionals at the end of the coming week. I am also excited to be looking forward to doing an online Q and A session for Scottish Autism, discussing advocacy and self-advocacy for autistic people. This will be happening on a date to be confirmed, sometime towards the end of July. More info to follow.

I also continue to be proud of the impact we are making with the Autistic Mutual Aid Fund. It has been a special privilege this week, in the face of global reminders of racial injustice, to be able to reach out to Black autistic advocacy organisations in order to ensure that everyone benefits from the community generosity encapsulated in the fund. You can find out more about the fund, and contribute or apply for a grant via this link.

I’m still struggling with the exhaustion, guilt, and fear of being a disabled #AutisticsInAcademia approaching the end of my PhD. Most of all, I love this work (and the activism that surrounds it) so much, it feels heart-breaking to worry that I may not get the chance to do more of it – in my mind, this is a risk mostly because nobody is likely to want to employ someone who looks as “weak” as me. I get myself past this fear by reminding myself that the majority of the work I enjoy most is unpaid anyway so there’s nothing really to stop me carrying on post-PhD – the silver lining of capitalist exploitation!

Right now, I’m excited about the week ahead – especially about spending more time with my data. But I need to rest, otherwise pain will get the better of me.

Wishing you a fulfilling week.

#AutisticPhDiary 1 – A Journey Begins…

This is the first post in a new blog-writing project I have decided to undertake during the last few months writing my PhD thesis. I am due to submit my thesis no later than 29 September 2020, and that date is beginning to loom frighteningly close on the horizon. I am feeling lots of things about the imminent end of a 5 year-long “journey”. There are two main reasons why I have decided to document these final few months – the first is personal, as regular writing (particularly for an audience) helps me to document, process, and structure my experiences; thereby making them less overwhelming. The second is that while there are some great examples of literature discussing how the viva process may be adapted for autistic doctoral students, (see for example, Martin 2010; Chown et al., 2016) what I would really like to be also able to read is an account of the experiences, and emotions of an autistic PhD student approaching the submission of her thesis; so I have decided to create such an account. I have written elsewhere (e.g. here) about the impact of my autistic identity on my self-confidence as a researcher, and it is certainly the case that this aspect of me is having an impact on how I am making sense of the prospect of a period of intense hard work alongside significant transition.

Of course it goes without saying that my autism is not the only “part” of me that will be relevant in what I document in this series – other characteristics such as my physical impairments and my part-time employment, as well as the wider social context (not least the fact that we remain in the grip of a pandemic) are factors that influence my views and experiences, and therefore my writing. It should also go without saying that this account is the account of one autistic researcher[1] , and is not in any way attempt to represent the voices of any autistic except myself. It should therefore be approached as a “diary” rather than as a “how-to guide”.

I aim to post a weekly update, each Sunday evening.

Week One – 25th May to 31st May

I am currently working on one of the empirical chapters of my thesis. This one uses interviews with 14 disabled activists to explore their views on advance decision-making. Advance decision-making (including Advance Decisions to Refuse Treatment and Lasting Power of Attorney) enable an adult in England or Wales to make medical decisions in advance of a time when they lose the mental capacity to do this themselves; or, to nominate someone else to make welfare decisions in their best interests. I am interested in the ways in which disability-identity and politics influence the ways disabled people approach this topic, and how we may be supported, and support each other to make informed decisions about this key aspect of our lives. This week, I have been particularly looking at the roles my interviewees envisaged for Disabled People’s Organisations in providing information and support on these topics. I am really excited about this part of the study in particular, as I think it has the potential to generate the kind of “real-world” impact about which I am particularly passionate.

I made an exciting breakthrough in my understanding of the methodology I am using (Thematic Analysis) too this week, as feedback from one of my supervisors pointed out that I had fallen into a trap of beginning each sentence with an individual pseudonym, and basically simply listing the relevant quotes from my data. Having read the feedback, I had a mental conversation with myself that went roughly like this:

“It does sound wrong with so many names at the start of sentences”

“… But if I make it less tied to individuals, I’m going to be generalising beyond that which is supported by the data. That feels uncomfortable…”

“Why is that?”

“… It’s because you are only listing quotes. You’ve rushed into writing and haven’t allowed your thinking to “cook” sufficiently. This means you haven’t actually added any analysis in what you’re writing. It feels wrong because it is wrong. You need to go beyond the individual quotes and think about what they tell you about the topic.”

I know that there is fabulous methodological literature on Thematic Analysis, that expresses precisely this issue much more eloquently than I have put it here, but there was something very special about the fact that this was my discovery (having been pointed in the right direction by my supervisor) in relation to my data that made this a powerful learning experience. I always find it easier to learn from concrete experiences like this, rather than from general, theoretical teaching. Obviously nobody likes having mistakes pointed out but if there is one thing I have particularly enjoyed about my PhD experience, it has been the opportunity to have time and space to really “grow” my thoughts and my writing over time and to be able to treat feedback as the kind of learning experience that I think it is supposed to be.

I have also begun working through the requirements for submitting my thesis. I have had a lot of support from my disability coordinator at Uni to help me locate the relevant information, and we are getting together a plan. For me, this includes having as much concrete information as possible, as soon as possible so that I can picture what the processes of submission and my viva will look like – preferably in a visual format. I have also worked with my learning support worker to make a condensed contents of the guidance for thesis submission so that I know what’s where when I need to find things. This is an important process, as it stops me being overwhelmed by too much information. These are the kind of thing that are the absolute hardest for me, and other parts of the PhD of which I’ve been most afraid throughout. My “survival strategy” is a combination of pragmatism (making sure I have all the relevant information when I need it, and being proactive in making sure I have access to this) and “escapism” (I am able to “lose myself” in the writing, and imagine myself doing it for its own sake – because I have something to say, much the same as my approach to writing this blog). This combination of approaches means that everything gets done that needs to be done, but I also have clear headspace, with anxiety under control, that enables me to get on and write. I will keep you up-to-date with the success (or otherwise) of this approach!

Life in General

There is so much going on in the world, and in my life right now that sometimes there is a risk that my PhD gets lost in it all. These are genuinely worrying times in which to be alive – especially as a disabled person. I feel frightened about being identifiably disabled and about being as “open” and vocal as I am about disability -related aspects of my life. However, I accepted a long time ago that I am incapable of being quiet, and of “playing the game” – that ship has definitely sailed. And therefore, I am relishing doing everything I can with the circumstances I have been given (e.g. check out the Autistic Mutual Aid Fund which is open for contributions and applications).

Also, it is almost impossible to explain how much of a full-time job just being a disabled person is. Before we even get to work, or study, or any other aspect of citizenship, we have to negotiate a daily onslaught of self-advocacy demands. At present, I am attempting to get some specialised mobility equipment that I need while in Lockdown, as my flat is not sufficiently accessible for my needs. The equipment will cost £130, but while I have a supportive physio who is doing her best, she is unclear as to how to obtain the funding required. In the meantime, I have had to use inappropriate equipment which is caused even more shoulder and back pain than I usually experience, and has left me with yet another reminder of just how much my dwarf body does not “fit” in this world. I have then had the humiliating experience of having to explain to the physio the exact nature of my body’s failure to conform. Self-advocacy is supposed to be “empowering”, but when you are up against an oppressive system that requires you to articulate your “need” in relation to its deviance from social norms it does not feel empowering. It feels like embarrassing disgrace. I succeeded in getting the information across to the physio, and now need to wait an unspecified length of time for a decision on whether we will be successful in gaining funding. If not, I will have to spend more of my own money on being as mobile as possible, and holding back the deterioration of my joints as much as I can. Compared with the roughly £10,000 my mobility has cost me so far this is a tiny amount, but my savings have now evaporated, and anyway – it’s the principle!

You may wonder what any of this has to do with a PhD. The answer is “nothing” – and that’s the point! I include this anecdote simply as an example of one of the countless additional tasks that are necessary alongside my PhD, and all the other necessary aspects of life. It may not seem like a big thing, and in fact, compared with other things that are also going on for me personally, and for us globally, it is a small thing. But these things get inside your head. They take up time, they divert your attention, and most of all they leave you wondering how anybody with so many “needs” is ever going to cross that PhD finish-line.

The Bright Side

Things that help me:

  • I have a lot going on, and my attention is easily distracted. I use my ability to hyper- focus to my advantage, and I concentrate entirely on whatever I happen to be doing at that precise moment. This could be working on my thesis, it could be activism, it could be making food, making my bed, taking a bath… any of the things that my day involves. The key thing is, it gets all my attention. Everything else will still be there when I have finished.
  • If I get feedback on any of my writing drafts, I print out the annotated draft and work the amendments into my original. I then save the amended original, but I don’t save the annotated version (the one from my supervisor) with my drafts. It is still available (in a folder in my emails) but it doesn’t get confused with other versions of the draft.
  • Linked to this, I found it easier to separate out the different “themes” of my analysis as the chapter is growing. It makes them much easier to navigate – especially as my visual processing is not always reliable.
  • Speaking of “processing” (and sensory/physical issues to do with working) I use dictation software, and a screen reader to help me produce my work. Dictating not only dramatically reduces the strain, and therefore the pain on my arms, shoulders, and neck, but it enables me to work when pain and fatigue would otherwise make this impossible. The positive impact on my self-esteem is quite amazing – as my life becomes much less a series of failures to navigate the hurdles my body puts in my way – and much more a routine of succeeding. Likewise, a screen reader enables me to listen back to what I have written, and to proof-read, in a way that my brain can hold onto. This means that my work feels much more “controlled” and much less a process of guess-work.
  • I have a whole heap of art projects, and books on the go. I immerse myself in these when not working with all the intensity I devote to anything I do. I am really lucky as it happens, that all my favourite pastimes now necessarily can be done from home. It makes Lockdown much less of a disruption than it must be to more sociable, physically-able people.

This week, I will be carrying on writing up the analysis for the Advance Decision chapter. I will let you know next Sunday how things have gone.


[1] Incidentally, the widespread tendency to insist that any autistic speaking or writing be prefaced with the qualification that “I don’t speak for all autistics” is something with which I am profoundly uncomfortable. This is not because I believe it to be untrue that all autistic people are unique and possessed of their own individual “voice” but because this is so obviously true as to make me suspicious that the insistence on its repeated emphasis serves more than anything to atomise, depoliticise, and ultimately silence autistic “voice” and sabotage attempts at autistic community-building. Autistic people are (at least) as individual, and heterogenous as any other social group. However, our experiences of the social world and its oppressive and exclusionary nature, tend to be boringly, frustratingly repetitive.

GLPhDProgress #1: Do (In)actions have Consequences? – Questioning accountability in the Mental Capacity Act 2005

[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).

Some case law involving this offense is available here: https://www.39essex.com/case_tag/criminal-offences-ill-treatment-wilful-neglect/

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 [2018] 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!