#AutisticPhDiary 3 – Advance Decisions Study Update, and the Open Justice Court of Protection Project


Observant readers will have noticed that I missed posting my weekly PhD update last Sunday night. This is because I was busy working on an exciting new project that launched last Monday – more of which below. Firstly though, let me fill you in on what I’ve been doing with my PhD.

PhD Update – Why making an Advance Decision is a holistic process

I have been working on my PhD study looking at the views of disabled activists on the subject of advance decision-making: Advance Decisions to Refuse Treatment (ADRT) and Lasting Power of Attorney (LPA). A question I’ve been exploring in my data is why, when so many of the participants seemed to be supportive of the right to refuse treatment, and of Advance Decisions in principle, only one of the 15 people I interviewed had made one for themselves.

One very good reason why a person would choose not to make an ADRT is if there are no treatments they would wish to refuse in advance. Some people have philosophical or practical reasons for this, so I wanted to see if any such reasons were represented among the activists. I found one participant (“Georgia”) who seemed to fit into this category, so I decided to explore her views further.

In our interview, I had asked Georgia if there were any circumstances in which she could envisage that she would wish to refuse treatment, and she said that she couldn’t – “because until I’m there, I don’t know”. Our conversation indicated that, like many people, Georgia viewed an Advance Decision as something that applies to end-of-life circumstances and life-sustaining treatments. She saw the decision as being concerned with whether a person would want to live a (potentially severely disabled) life post-treatment, with treatment refusal being a way to avoid this, adding that “it might not be as bad as we think it would be”; and referring to “research” that indicates people have a tendency to “think things are going to be…awful” living such a life, but that when “it happens to them” the situation is “not as bad as they thought”. This means that she wouldn’t wish to refuse medical treatment in future and risk “missing out” on a quality of life that is more tolerable than she may have predicted.

This kind of view is very prominent in disability rights activism. We are used to defending ourselves from people who tell us (seemingly as a compliment) that they would rather be dead than live with your impairments; and we have experienced our own “journey” of “getting used to” the onset or progression of our impairments. With this as our frame of reference, it can be anathema to us to consider that we may wish to outline a situation in which we would rather refuse life-sustaining treatment than live with profound or severe impairments. It “goes against our grain”. It also seems, on the face of it, to provide a clear-cut illustration of a situation in which an Advance Decision would not be appropriate.

But then I looked at what else Georgia and I discussed during the interview. And I found that we talked about Georgia’s medical history and activism. She told me about a new treatment for her impairment about which she was sceptical, as “I don’t feel it’s been researched properly”. She also worried that the parents of children with her condition were subject to “social pressure” to pursue the treatment for their children, but commented “I don’t think my life is that bad and I have not had the treatment. So why would it be amazing for them to have it?” This treatment is given during childhood, and would not be offered to Georgia. She wouldn’t need to consider making an Advance Decision to protect herself from being subjected to it if she were to lose capacity in the future. In itself, it therefore isn’t a reason to challenge the position that she does not need an ADRT.

What this point does illustrate though is that there are circumstances in which Georgia may contemplate refusing medical treatment. I think this is important, because it shows how important it is to go beyond asking a direct question that seeks to elicit information about specific treatments a person wishes to refuse. In Georgia’s case, such a direct question would establish that she does not wish to refuse any treatments in advance. Instead, it is key to have a comprehensive, nuanced discussion about the person, their experiences and values. Doing so with Georgia has cast doubt on the position that an Advance Decision would be inappropriate for her. Instead, it may be appropriate to provide her with examples of situations in which Advance Decisions can be used in other situations (i.e. not specifically to refuse life-sustaining treatments. Given that we know Georgia is not philosophically opposed to the refusal of medical treatment, and that she is keen to defend life with impairments, it is possible that she may come to a different conclusion regarding her personal use of ADRTs with access to further information. It is also possible that – particularly for a disability rights activist – a direct question regarding their intention to refuse treatment in advance may elicit a defensive response in the way that I outline above. A broader, more nuanced conversation allows for the nuance and person-centred approach that could enable a person to outline their views and values more comprehensively.

I think that I’ll be able to incorporate this finding into my analysis, and that it will contribute to knowledge about how best to support disabled people to access their right to advance decision-making. We shall see…

Exciting news – Launch of new project

As I hinted above, the last couple of weeks have been very busy. This is because Celia Kitzinger and I have launched a new project!

The Open Justice Court of Protection Project promotes transparency and open justice in the English Court of Protection – a court established by the Mental Capacity Act 2005 to make key decisions in the lives of disabled people who lack the capacity to make such decisions for themselves. It builds on Celia’s and my respective research in the Court of Protection, and is encouraging and supporting people to be Public Observers of court hearings, and write about them on our blog.

You can find out more about the project on our website openjusticecourtofprotection.org – It has really taken off, and attracted much more interest than we thought it might, proving that there is a real appetite for promoting transparency and public scrutiny of a court that makes, and sanctions, often life-changing decisions in the lives of some of the most vulnerable members of our society.

I am delighted to be co-directing this project with Celia, and look forward to making a difference and creating socio-legal change with it.

Life in general

Lots of work and excitement means that I am tired right now – and weak. But I am also intellectually, politically, and emotionally energised, and feeling competent and capable. It is such a tightrope being a person with disabilities and chronic illnesses who is passionate about her work, and has high standards about what she wants to achieve in life. Becoming (more) ill in the last couple of years has robbed me of a confidence I used to feel – that I could do anything I put my mind to, if I just worked for it (I am very lucky to have been brought up to believe that by parents who encouraged and believed in me). I have always assumed that things need doing, and my job is to work until they are done.

But chronic pain and chronic fatigue throw a spanner in those works, and life suddenly becomes unpredictable. You never know until you wake up in a morning how you’re going to feel that day – and whether you are going to be efficient, productive, and able to manage pain; or whether you’re going to spend most of the day in bed, crying because you know you’ll feel better if you eat, but you can’t get to the food – and you’ve had to cancel meetings and extend deadlines, and you hate letting people down. And unlike for most people, this isn’t a “sick day”, this is your life. You can’t guarantee that you’ll feel better tomorrow or the next day. What if this is yet another “progression” of your disease? What if this is the “new normal”?

But right now, I am working hard and enjoying myself. I feel like someone who can do things – not like a “disabled person” (I know those two categories are not mutually exclusive). All the symptoms, and the disability-bureaucracy are still there, but they’re not my focus. Hyper-focusing on work enables me to put them into the background, and concentrate on something good, and useful, and important.

It’s inevitable that exhaustion and pain, and sickness, and inability to work will be features of my life for the rest of my life. But I refuse to live my life on that basis. I will cross that bridge when I come to it, and enjoy doing what I love until then. One day at a time.

#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.