#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.

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