Earlier this year, I was honoured to be awarded a prize from the Caroline Gooding Memorial Fund to support my research in Disability Law. Last Friday, Baroness Jane Campbell gave the annual Caroline Gooding Memorial Disability Law lecture – co-hosted by the University of Leeds School of Law and Interdisciplinary Centre for Disability Studies – during which the prizes for 2019 and 2020 were formally announced and presented (via Zoom).
In addition to the financial support the award has given me – meaning that as a disabled researcher, I am able to continue my work without further compromising my health – it is a huge honour to have my work recognised and supported by the committee responsible for a fund set up in memory of the work of such a pioneering disabled activist as Caroline Gooding. Gooding was a ‘radical lawyer’ who was instrumental in the campaign for, and the development of, the Disability Discrimination Act 1995 (now incorporated into the Equality Act 2010), and who worked tirelessly to research and implement ways in which the law can be used to make the world a better place for disabled people. You can read a commentary on the work of Caroline Gooding, and her contribution to the field of civil rights for disabled people in this article by Nick O’Brien: “Disability Discrimination Law in the United Kingdom and the New Civil Rights History :The Contribution of Caroline Gooding“. For me, as a disabled feminist and academic lawyer, it is a huge privilege to be awarded a prize commemorating the life, work, and activism of such a remarkable person who has now become a significant influence for me.
In this post, I want to share the link to the Caroline Gooding Memorial Lecture 2020 – at which Baroness Jane Campbell gave a talk entitled “Disability Rights and the Pandemic: A Story of Resilience”: you can access a transcript of the talk via her website (here).
I also want to share my short acceptance speech that was played at the lecture after my prize had been awarded by Baroness Campbell (which was quite a moment!). The clip lasts 3 min 21 sec.
It is so encouraging to have my work recognised and supported by this prize. I would once again like to thank the Caroline Gooding Memorial Fund committee for the faith they have shown in the work; and look forward to doing it justice with my completed thesis.
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.
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  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.
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 , 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.
 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.
[Side note: Happy New Year! I’ve decided I’m going to try to write a blog summarizing my PhD work, and related thinking, every week. Wednesdays are traditionally my day off, so now seems as good a time as any to get going…]
Why do we obey the law?
This is probably one of those jurisprudential questions that verges on the unanswerable, perhaps precisely because there are so many possible answers. And indeed, the question of obedience to the law has been debated extensively among legal philosophers (see, for example, the edited collection of readings on “The Duty to Obey the Law” by Edmonson, 1998). My aim here is not to try to provide an answer to this philosophical question.
But I have been reflecting on what “accountability” means in the context of the Mental Capacity Act 2005: taking as my starting point the perhaps rather simplistic assumption that if a law exists, its impact should be discernible in the consequences of its observance, but also of its transgression. I.e. If you break the law, you should hold a reasonable expectation of personal consequences as a result.
As I have been working through the analysis of my dataset for my current project (a textual ethnography of research ethics application processes for research involving participants who lack the capacity to consent – engaging ss.30-34 MCA 2005), I have noticed how many times I’ve referred to the “responsibilities” of the researcher – their “obligations” and “duties”, under either the law, or other forms of professional or institutional regulatory governance frameworks. And this has led me to question the nature of these responsibilities – particularly, what happens if the researcher fails to meet their legal obligations under the MCA 2005?
It has seemed rather difficult to identify any single, universally applicable answer to this question. But here are some of my findings and thoughts so far:
Institutions sometimes refer to the MCA 2005 in their ethics application forms, but they don’t always. When they don’t do this, they direct researchers working with participants who “lack capacity” to NHS research ethics protocols. If they do refer to the law, this may be to inform the researcher (sometimes erroneously) as to what the MCA 2005 “requires”.
The MCA 2005 sets out, in general terms, what is “required” of the researcher (although it is necessary to consult secondary legislation, and additional legal and professional guidance documentation for definition and clarification).
The MCA 2005 states that research that does not abide by the requirements set out in the Act is “unlawful”. However, it makes no mention of any consequences arising directly from such illegality.
I have been unable to find any cases where researchers experienced legal sanctions as a direct result of failure to adhere to the MCA 2005.
It seems most likely that consequences of failure to follow the Act may arise indirectly, depending on the type of research undertaken, and what this involves for participants. For example, if research involving the administering of a specific treatment is undertaken involving participants who lack the capacity to consent, and the framework set out in ss.3–34 MCA 2005 are not followed, the research itself is “unlawful”. This means that the treatment administered was given without the required “best interests” process set out elsewhere in the Act, and would therefore constitute assault/battery. It is perhaps harder to think how this may apply to research that is less invasive (e.g. research involving interviewing) – although as the obtaining of “intrusive” personal data via unlawful research may be construed as fraudulent, it is likely that redress may be sought via fraud, or data protection legislation.
My analysis of the full legal, ethical, professional, and institutional regulatory frameworks that apply to researchers working with participants who lack the capacity to consent has shown that the majority of “consequences” relating to transgression of the framework set out in the MCA 2005 are to be inferred from institutional/professional regulation mechanisms that indirectly invoke the Act – e.g. Research Governance Codes of Conduct that require researchers to follow any law relating to their proposed research undertakings. As such codes form part of the studentship/employment contracts existing between the researcher and the institution, personal consequences (e.g. dismissal for gross misconduct) are likely to be swift and devastating to the researcher.
This last point reinforces, and reminds me of how important it is that I research and understand the Mental Capacity Act 2005 as a socio-cultural structure that exists within a complex matrix of social domains. In this instance, the “reach” of the MCA 2005 is perhaps felt most acutely, not in the Court of Protection, but in the university Human Resources department.
I have also been trying to identify wider consequences of failure to adhere to the MCA 2005. The Act brought with it a new criminal offense – that of “Ill treatment or wilful neglect of a person lacking capacity” (s.44 MCA 2005).
Another case of interest to my own research (that relating to Advance Decisions to Refuse Treatment) is that of Jillian Rushton: a retired nurse who received Clinically Assisted Nutrition and Hydration via a feeding tube following a brain injury, contrary to the provisions of her ADRT – seemingly due to a failure of healthcare professionals/organisations to maintain and communicate her ADRT. The case (NHS Cumbria CCG v Mrs Jillian Rushton (by her Litigation Friend) and Mr Tim Rushton  EWCOP 41) is reported here (https://www.bailii.org/ew/cases/EWCOP/2018/41.html) – though is of limited relevance to the issue of sanction for non-compliance with the Act, because as Mr Justice Hayden made clear in the judgment, he was not asked to consider matters of responsibility for failure to adhere to Mrs Rushton’s ADRT, and did not address this in the judgment.
Lastly, for now, my own ethnographic work in the Court of Protection identifies a consequence for Local Authorities of failure to adhere to an aspect of the MCA 2005 that has widely been interpreted as a bureaucratic burden for LAs – the Deprivation of Liberty Safeguards (DoLS). On more than one occasion, hearings I had planned to attend were vacated at short notice, at the request of a Local Authority that was unprepared for the hearing. However, on one occasion, the LA in question assumed the judge would agree to vacate, and therefore did not attend the hearing. This was not, in fact, the case. The judge had not agreed to the request to vacate, meaning that an (unsurprisingly short and unproductive) hearing took place, with costs being awarded against the Local Authority.
I would like to expand this list of “consequences of non-compliance with the MCA 2005” – by adding themes, and details, and by considering the impact of non-compliance from multiple perspectives.
If you have thoughts or experiences to add, please get in touch!
Alongside my academic research and other arts and activism, I work for an advocacy organisation in Leeds called Advonet. Part of this role has involved being a work-based evaluator for a very exciting endeavour – the Leeds LGBTQ+ Health Inclusion Project. This is a project that uses self-advocacy/peer support, and the training of healthcare professionals to address the exclusion and inequalities experienced by members of LGBTQ+ communities who have “additional needs” (i.e. who are autistic, have a learning disability, and/or who experience mental health difficulties).
My role as evaluator involves observing the project as it develops – sitting in on self-advocacy workshops and training sessions, and talking to project staff, and participants, to find out what they think about its achievements. In order to do this, it is essential that I am able to build a rapport with all those involved with the project, but I’ve found a problem with this, as it’s been difficult to communicate what my role involves. This has meant that project staff are unsure how to introduce me, and people are slightly concerned as they don’t know what to expect from me. This is especially challenging, given the personal, sensitive nature of much of the discussion that takes place in the workshops and training sessions. I needed to come up with a way to communicate what I’m trying to achieve.
Alongside this, I’m keen to start a conversation within the voluntary sector more widely – to discuss how we evaluate ourselves: how we celebrate our many achievements, and how we make our work even better.
So – I came up with the idea of making a video presentation (using PowerPoint and YouTube), in order to communicate my ideas around project evaluation – and, particularly, how we might use evaluation as a tool to ensure that all those involved in our projects and partnerships have the opportunity to have their “voice” heard in taking the work forward.
This style of presentation/communication itself is a work-in-progress. Things I’m aware of so far include the fact that the video is too long overall, perhaps because I’m communicating to multiple audiences. I think it may be difficult to hold people’s attention for so long. I’m also aware that in places, the text on the slides doesn’t sync with what I say in the audio. This is because as I was figuring out my working method, I edited things considerably. In future, I think I’ll be much clearer about what I’m doing, and about how much content I’ll be aiming to include altogether, meaning things will be much more fluently presented.
I’d really like to know how else I might develop these kinds of communication tools (both conceptually and technically).
Here is the video. I’ll copy the transcript below:
Introducing Project Evaluation: How does it help our voices be heard.
Welcome to this short film, providing an introduction to project evaluation– and explaining the evaluation of the Leeds LGBTQ+ Health Inclusion Project.
This film is for anyone involved with the project – including project facilitators, peer supporters, self-advocates, and funders; along with anyone interested in carrying out project evaluations for other, similar, projects.
A transcript of what I am saying is available in the “notes” section of the PowerPoint file, or in the description box below the video, if you’re watching on YouTube. If you have any questions, contact details are provided at the end of the film – feel free to get in touch.
I’m Gill Loomes, project evaluator for the Leeds LGBTQ+ Health Inclusion Project.
As a disabled person, I care about disabled voices being heard, and as a researcher, I want to use my skills to make that happen.
In this short film, I explain what project evaluation is, particularly how it’s being done at the Leeds LGBTQ+ Health Inclusion Project, – including how you can get involved, and how it can help us to be heard…
The word “evaluation” can have different meanings. But, in broad, simple terms, it means something like “checking the progress or merit of a thing, according to agreed standards”. When it comes to projects like the Leeds LGBTQ+ Health Inclusion Project, this is often thought to mean checking whether the project is delivering “value for money”.
You might think that the process of evaluating a project, such as the Leeds LGBTQ+ Health Inclusion Project, sounds like a rather boring job, that produces pages of words and numbers that no one will ever read. Or you might see it as obligatory – something we have to do, in order to keep the organisations that fund our projects happy. And it is often the case that funders require projects to evaluate their progress – for example, the Leeds LGBTQ+ Health Inclusion Project is funded by the Government Equality Office, which requires all projects that it funds to provide evaluations – in order to check how funding is being spent, and also to provide information that might be useful to other, similar projects.
But, depending on how it’s designed and carried out, a project evaluation can serve another important purpose – one that should matter a lot to advocacy, and self-advocacy organisations: a project evaluation can be an opportunity for all those involved in the project to have their say, and to have their voice heard – about how the project is run, about the difference it makes in society, and about what is working, and what is not working.
In this way, an evaluation can be an opportunity to promote equality within a project, and to ensure that everyone’s voice is heard. As it says here – [reads quote above from House, 1993]
So, let’s take a look at how a project evaluation can work – and how the evaluation of the Leeds LGBTQ+ Health Inclusion Project aims to ensure that the voices of everyone involved in the project are heard.
There are 2 more slides in this film. They explore the following questions [reads questions on slide]
So, the first question we are going to think about is “What is Project Evaluation – and how can it help our voices to be heard?”
We can think about what an evaluation is by answering 3 questions:
How (is the evaluation done) – an evaluation looks at something systematically – that is, it’s organised, and happens according to a plan.
What (does the evaluation do) – it produces information about a project, and the effects of the project.
Who (is the evaluation for) – anyone who is interested in the project; how it works, and how it can be improved.
We can think about what an evaluation considers:
Project goals: How has the project met their goals? Have their goals changed in response to the priorities of project participants?
Decision-making: How does decision-making happen within the project? Is it efficient? Who gets a say in important decisions? Who is responsible for making sure things get done?
Different explanations: When evaluating a project, how do you ensure that different views about the project and how it works are represented?
Different users: When planning what questions to ask in an evaluation, think about who is going to use the evaluation. What do project participants need to know about the project? What do project funders need to know? How do you ensure you ask, and answer the right questions?
And we can think about what is important to make sure that an evaluation helps voices to be heard:
The evaluation must be responsive to the needs of project participants.
It can be goal-flexible, ensuring that different goals prioritized by participants are represented.
It ensures that alternative explanations and perspectives are represented and explored.
And it considers the needs of all users of the project, and the evaluation.
On the next slide, we’ll see how the evaluation of the Leeds LGBTQ+ Health Inclusion Project considers each of these things in its evaluation.
The LGBTQ+ Health Inclusion Project works to improve access to healthcare services for members of LGBTQ+ communities who are autistic, who have a learning disability, and/or who experience mental health difficulties. It does this by organising self-advocacy courses, and peer-support for members of these communities, and by offering training, designed and delivered by people with lived experience of these issues, to healthcare professionals.
The Government Equality Office, which provides the funding for the project , needs an evaluation of how the project works, and what it achieves. It needs to be able to show how public money has been spent.
The evaluation also provides an important opportunity for participants to have their say about what has worked, and what they might do differently.
And we also hope that the evaluation will be useful to other people and organisations looking to set up similar projects, so that they can learn from our experiences.
In order to provide information about the project that will be useful to all the people who are interested in the evaluation, and to ensure that we provide all the information that is needed, the evaluation is in two parts: An independent evaluator (called Tia) will look at the project from the “outside”, focusing mostly on how the project has achieved the goals it set out to achieve.
Alongside the independent evaluation, I am undertaking a work-based evaluation to give participants an opportunity to have their say about their experiences of the project.
If you are involved in the Leeds LGBTQ+ Health Inclusion Project, you might well come across Tia and me at some point. We may pop into a workshop you are involved in – this is to see how the workshops run, and to look at what works well, and what might be organised differently. And it is to give people an opportunity to describe their experiences with the project.
A word about what evaluation is NOT:
It is NOT to record details of discussions that are taking place, or to “check up” on anyone involved in the project – and anyone involved in the project with any questions or concerns should feel free to speak to Tia or me, at any time.
Contact details for me, and for Advonet (the organisation hosting the project) are on the next slide)
Thank you for listening to this short film. Please feel free to get in touch about the evaluation, or about the Leeds LGBTQ+ Health Inclusion Project itself.
Thanks so much for checking out this blog – I’d love to hear your thoughts about communicating ideas, research findings, evaluations, anything…
I’m quite used to being supported by support workers/PAs in different capacities – having had educational and employment support in different forms for the last 20 years or so. I’ve also BEEN a support worker. However, no matter how “used to” it I get, I still find the initial meeting with a new support worker – or rather, a worker in a new role, challenging and extremely anxiety/panic-inducing.
I’m not too sure to what extent this is impacted by my autism – I suspect my autism plays at least a contributing part in my discomfort, given that what I struggle with most is interacting with a “new” person. It just generally feels like I don’t know what to expect – what the person will say, how I might respond, what comes next etc – without having “learned” how a person communicates, I find it extremely difficult to predict what they might say in any given context, meaning I can’t prepare or “rehearse”, as I would before meeting with someone I know. However, I’m fairly certain that many people (autistic or not) would find being supported for the first time, or in a new context, challenging – so I hope that this blog might help.
Today, I met a new PA at uni. This is a different kind of support, to add to that which I already have in place, so I was very apprehensive. What we did during the session was to put together a list of things that it’s useful to know, in order to support me effectively. This list is not exhaustive – because of the nature of support work, you often have to work with lots of people, who only get to meet you at short notice, and it’s difficult to get information to your team in advance. So it’s important that the list is something that can be given to the worker at the start of the session, and that they can look through quickly without being “over-faced”. So the list prioritises things that someone needs to know as soon as they meet me – taking into account that at this point, I’m likely to be extremely anxious, and not as competent at verbal communication as I ordinarily am.Other things I can explain as I get to know each support worker over time.
I’ve also prioritised putting in writing aspects of my preferred support that go most against how support workers are trained, and what is perceived as “good” support (for me, the clearest example of this is the fact that I prefer support workers to make suggestions about what we might do, that I’m happy to agree or disagree with, rather than them leaving this totally up to me). I’ve found in the past that people can feel very uncomfortable with (what they perceive to be) “taking control”, so putting in writing that this is what I need in order for me to make autonomous decisions from the beginning can give “permission” for them to work in a way that is truly “person-centred” for me. For this reason, it was really helpful to make this list along with one of my support workers, in order to get her input about how support workers are trained, and what is expected of them.
I’ll have copies of the list with me at the start of each support session.
I’m reproducing it here, in case it helps anyone else to communicate with new support workers, or lessens their anxiety about doing so:
Introduction for New Support Workers
I’m Gill Loomes. I’m a PhD student – I have multiple physical
disabilities and autism, and I’m a wheelchair user. Here are some things that
it’s helpful for you to know, in order to support me.
best to meet me in Disability Services. I’ll try to wait in reception, but I
might need to go to the Quiet Room. If I need to go to the Quiet Room, I’ll let
whoever is at the reception desk know that this is where I’ve gone.
I’m autistic, I often experience extreme sensory overload and “panic” when
meeting someone for the first time. This means I might not look at you, I might
flap my hands and tap, and/or I might struggle to speak, and stutter. When
this happens, it helps me if you give me time and plenty of physical space. If
you want to talk to me, it helps if you start with my name (I prefer “Gill” to
“Gillian”) in order to get my attention. Please DON’T try to finish my
sentences for me.
I appreciate that you will want to provide “person-centred”
support for me, and to enable my autonomy. For me, person-centred support includes:
find open-ended questions very overwhelming and demanding (e.g. “what shall we
do today?” “where do you want to go for coffee?”). It’s better if you give me a
yes/no, or either/or choice (e.g. “Are we going straight to the library, or
are there other things to do first?”)
a PhD student, I mostly need physical support in writing up my thesis. I can
tell you exactly what to do. I just need help with skills requiring fine motor
co-ordination and arm mobility (e.g. typing, using mouse etc).
can you prompt me to take short breaks? – Approx. every 20 mins
Thank you very much.
Hope you find this useful.
I’d be interested to hear how other people get on with working with new support staff – or how support workers feel about meeting new people. What have you found effective? What is best avoided?
When I was thirteen, a doctor
wanted to break my jaw.
I have multiple skeletal
abnormalities due to gene deletions and mutations, as a result of which, I’ve
had a long history of interactions with healthcare professionals. The encounter
with the orthodontic surgeon was one such interaction. He proposed surgery for what would have been
largely cosmetic reasons, and we decided against it. I compare this encounter
with what happened when I first visited my hand specialist. I was 15, and had
just been diagnosed with a specific deformity affecting my forearms and wrists.
After telling me about the condition, the specialist explained that as I had
stopped growing, there was no appropriate treatment, He went on suggest that
there had been a number of surgical treatments attempted for this extremely
rare condition, that the reason for so many varied attempts was that surgeons
were keen to “make their name” by devising complex surgical interventions, but
that none had a strong likelihood of a positive outcome, and many had made
patients’ symptoms worse. He also told me that surgical intervention was more
common in the U.S. than in the U.K. – because the system of medical insurance
made surgeons keener to pursue interventions that could be funded by insurance
I am not concerned here with the “truth”
or otherwise of these issues. I am using these experiences to set out the
context that forms my experiences as a disabled person, concerning medical
treatment. Encounters such as this mean I grew up with the impression that
doctors were likely to propose aggressive surgical treatments, not on the basis
of what might provide the best outcome for me, but on the basis of what they “could
do”, or of what may be in it for them, and their career. I certainly was not encouraged
to believe that I could rely on a doctor to have my “best interests” at heart, or
to consider the impact of my conditions and related treatments on my life
outside of their consulting room. This, along with humiliating examinations,
and rooms crammed full of curious medical students, made me feel like a series
of “problems” to be “fixed”.
I know I am not the only disabled
person to have such formative experiences. I know that many of us have stories to
tell of such oppressions at the hands of healthcare professionals. I also feel
strongly that such oppressive encounters are not unique to medical environments,
but rather they reproduce and echo the ways in which disabled people are viewed
and treated in, and by, society more widely. Such clinically-situated
oppressions manifest themselves in two ways:
Coercion into unwanted or unnecessary treatment,
with the aim of enabling people to conform to normative expectations of cognitive,
emotional, or physical presentation.
The withholding of treatments, based on assumptions
or judgments about the “worth” of a disabled person’s life. This may include
placing DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) orders on
disabled people, without discussion or consent, as a result of views about the
person’s “quality of life”.
My own experiences, and the
culture within which I exist as a disabled person, are some of the reasons why
I am passionate about autonomy and self-determination, particularly regarding
interactions with healthcare professionals, and with medical systems and
structures. There are lots of ways of tackling social injustices around
healthcare, but it seems a good strategy to begin with the tools we already
have. One such category of tools comprises the rights enshrined in existing
legislation. So, for this reason, part of my PhD research (which focuses on
issues around the Mental Capacity Act 2005, and its impact on the “voice” of
disabled people), is concerned with Advance Decisions to Refuse Treatment (ADRT).
In this blog, I am setting out my emerging thoughts about the concept of ADRT,
and what it may offer for disabled people – particularly in conjunction with
another existing legislative instrument: the United Nations Convention on the
Rights of Persons with Disabilities (the UNCRPD).
Adults with Capacity and Treatment Refusal
As an adult with the mental
capacity to make decisions about medical treatment (according to the framework
set out in the Mental Capacity Act 2005), I don’t need to worry overly much
about the possibility of being subjected to medical interventions to which I
have not consented. The right to self-determination and autonomy for “competent”
adults, with regard to the refusal of medical treatment has been enshrined in
English case law – for example, in Re T (Adult: Refusal of Treatment) 
Family Law 93, as Lord Donaldson MR stated, in analysing the tension between
the rights of the individual (to self-determination – the right to live her
life as she wishes), and of the society in which the individual lives (in upholding
the principle of the sanctity of life), “in the ultimate, the right of the
individual is paramount” (at p.113). Concerns about the conflation of the “competence”
of an individual to make a decision with her reasoning for that decision (as
suggested in Re B (Adult: Refusal of Medical Treatment)  2 All ER
449 – see Stauch, 2002) have, at least as a matter of legal theory, been
addressed by the MCA 2005 – in particular s.3 MCA 2005, that sets out the “process”
criteria by which capacity is assessed, in conjunction with the overarching
principles of the Act, stating that capacity is to be presumed (s.1(2) MCA
2005), and that an objectively “unwise” decision is not grounds for an inference
of lack of capacity (s.1(4) MCA 2005).
In reality, life as a disabled
person is often more complex than this. During the interviews I have carried
out so far with disabled people about their views on advance decision-making, participants
have told me a great deal about such complexities – people feeling compelled to
accept “talking therapy” in order to maintain access to medications they
believe benefits them, people who worry about losing the cooperation of doctors
they rely on for medical evidence that impacts their education, employment, or
access to social welfare, people who feel pressure from family members, and
others close to them, who view their refusal of treatment as “giving up” or as “not
trying hard enough”. So, there is obviously a lot at stake for disabled people
in refusing treatments, even when our mental capacity to make such decisions is
not contested. But what about if we lose this capacity? What about people in my
situation – who, as a result of our experiences, fear the loss of control, and
the surrendering of this control to healthcare professionals who have so far
failed to earn the right to such profound, fundamental trust? Well, ahead of
such a loss of capacity, a loss of control, we have an option enshrined in law –
we have the right to make an Advance Decision to Refuse Treatment (ADRT)
Advance Decisions: What are they?
Advance Decisions to Refuse Treatment
(ADRT) have historically been known as “Living Wills”, and, prior to their
enshrining in statute in the Mental Capacity Act 2005 (the MCA 2005), they
existed in Common Law. The current ADRT legal framework is set out in ss.24-26
MCA 2005, which state the following:
S.24 MCA 2005 (General Provisions): A capacitous
person may make an ADRT after reaching the age of 18, to ensure that if in
future in given circumstances, a medical treatment is proposed for them, and
they lack the capacity to consent to such treatment, the treatment should not
be carried out. This decision may subsequently be withdrawn while the person retains
capacity, and such withdrawal need not be in writing.
S.25 MCA 2005 (Validity and Applicability):
The ADRT will not be valid if a) it has subsequently been withdrawn; b)
the person who made it has subsequently granted a Lasting Power of Attorney,
giving someone the power to give or refuse consent for the treatment to which
the ADRT relates; or, c) the person has done anything else “clearly inconsistent
with the advance decision remaining his fixed decision”. The ADRT will not be applicable
if a) the treatment proposed is not that specified in the ADRT; b) any
circumstances specified in the ADRT are absent; or, c) there are reasonable
grounds to believe that circumstances exist that the person did not anticipate
at the time, and which would have affected the decision if they had anticipated
them. There are further requirements of an ADRT relating to life-sustaining
treatment – in order to be applicable, such a decision must be accompanied
by a statement to the effect that it is to apply even in circumstances where
the person’s life is at risk. Further, the decision must be made in writing,
and it must be signed and witnessed.
S.26 MCA 2006 (Effects of an ADRT): If a
person has made an ADRT that is valid and applicable, a) a person does not incur
liability for carrying out or continuing treatment unless, at the time, s/he is
satisfied that an ADRT exists and is valid and applicable; and, b) a person
does not incur liability for the consequences of withholding or withdrawing a
treatment from a person, if, at the time, they believe an ADRT exists that is
valid and applicable.
This means that, in theory at
least, I have the legal right to make provisions that ensure I don’t need to
live in fear of being subjected to treatments in circumstances where I lack the
capacity to give or withhold consent. I don’t need to worry about doctors
wanting to “make their name” with my body, or to make money through treatments
that are unlikely to make me better, and that might make my prognosis worse.
Such fears don’t need to dominate my life. There is lots of discussion about
the metaphysical dilemmas surrounding the concept of ADRT, as a mechanism for “present
me” making decisions for “future me” – and whether I would be the “same person”
in future, if I lost capacity (see, for example: Dworkin, 1993; Dresser, 2018).
But for me, the scenarios I’ve set out here illustrate a key contemporaneous value
of the concept of ADRT for me, as a disabled person – in that they give “present
me” rights to live, at least in theory, free from fears about what might happen
in my future.
Theory and Practice
There is a lot in the analysis I
have presented here that applies “in theory” – with rights set out in the “black
letter of the law”. However, as in most areas of the law, the situation in
practice is considerably less clear. Despite the possibility for ADRT to confer
legal rights that are likely to be especially beneficial to disabled people,
there are also several complexities to address:
How do disabled people approach the concept of
refusing treatment within a social and cultural context that controls the
giving and withholding of medical treatment based on a set of values that views
us as “lesser” than abled people – that makes judgments about our worth, and
our “quality of life” based on ableist assumptions and expectations? (This is
the focus of the “legal consciousness” study that forms one of the chapters of
How do the rights of disabled people to exercise
their legal capacity to refuse future treatment exist alongside those of abled
people? Particularly, given the existence of a wide range of conceptual and
practical problems impacting the population as a whole; with regard to access,
uptake, and implementation of ADRTs, what are the best ways to approach these
issues for disabled people? To what extent is it appropriate to argue for
better access to ADRT for the general population, while ensuring that disabled
access forms part of this overall agenda? And what “special” protections and
affordances might be offered by tools and strategies that relate specifically to
disabled people, and the culture of oppression that affects us uniquely (such
as the relevant provisions of the United Nations Convention on the Rights of
Persons with Disabilities)? This forms the basis of a separate but related
doctrinal analysis on which I’m currently working.
It would be great to hear of any
thoughts people might have on these themes. In particular, I am keen to hear
from disabled people about our experiences of refusing medical treatment
(including those relating to mental ill-health), and of attempting to make
ADRTs, or supporting others to do so.
You can contact me via the
contact page on this website, via Twitter (@loomesgill), or by email (firstname.lastname@example.org)
If you would like to find out more about Advance Decisions to Refuse Treatment, check out compassionindying.org.uk – or to access a template to plan your own ADRT, visit mydecisions.org.uk.
I made a request on Twitter for people working or studying in academia to share what adjustments or accommodations work to make things better for them. As usual, #AutisticsInAcademia came through, and made some great suggestions. I’ve compiled them into a list below.
I find my “voice” through writing, in a way that’s beautiful, delicious, self-expression … except when it isn’t.
When it’s “right”, it’s pure exhilaration, it’s something approaching
orgasmic – erotic, as when “work becomes a conscious decision – a longed-for
bed which I enter gratefully, and from which I rise up empowered (Lorde, 1978).
It’s pure artistry which I, as a person for whom speech, though mostly
achievable, comes with the neurological energy demands of an
almost-though-not-quite-fluent second language, value hugely.
When it’s not “right”, however – when my thoughts desert me, when the
mists descend and I can’t see the words for the trees, or, more usually, when I
feel so pulled in multiple other directions across the expansive terrain of my
life that I lack the ability – or, the “air and light and time and space” to
immerse myself in the poetry of ideas, and the music of words, it’s torturous,
And I’d love to be able to increase the “right” – to make it more
trainable, more controllable, more malleable – less “wild stallion”, more … not
“dressage” exactly, but perhaps the powerful, enthusiastic, harnessed energy of
riding across country – reaching your destination, but also enjoying the ride.
The trouble is that I’ve never been good at being “taught” to write.
It’s just been something that I “do”, and every time anyone has attempted to
teach me, or I’ve searched books for ideas on “how to” train this aspect of me,
the end has been hot, angry frustration as I attempt to (or feel pressured
into) twisting my reluctant, stubborn brain into the mental gymnastics required
for me to think, and work, like someone else.
There is one exception to this that I remember clearly – one of my
junior school teachers used to set a weekly writing exercise, whereby he gave
out a topic or title on the Monday of each week, and on the Friday morning we
had to write a piece based on the topic. This was just delightful – a chance to
indulge in playing with words, and making music using the melodies I acquired
through voracious reading, and a chance to excel at a personal passion. It was
also purely generative, as the odd suggestion over the shoulder led to an
improved lexical choice, or a grammatical or syntactical improvement – clearer
communication and sharper expression of my ideas. However, with this exception,
all other experiences of education on writing have resulted in nothing but
frustration, angst, brutality, and a host of murdered darlings.
I had reached the conclusion that my approach to writing is too
idiosyncratic, – more (uncontrollable, or at least, uncontrolled) magic than craft
– and too sporadic and reliant upon the capricious will of my own mind to be
susceptible to aid and structured improvement.
Then recently, I discovered this book.
Helen Sword has produced exactly the guide to academic writing that I needed.
And she has done this by not really providing a “guide” at all – but
rather an empirical study of the writing habits of academics across
disciplines, and around the world.
Taking its title from the poem by Charles Bukowski, the book speaks to
the image of a suffering-yet-productive artist, as a model relating to
academics, and asserts that there is no point in waiting for a perfect space in
which to create – as creativity will emerge in the most trying of physical,
personal, and social circumstances (not sure quite what Virginia Woolf would
make to this? But then, who’s afraid of Virginia Woolf?).
The central thesis of the book is the development of a “BASE” model,
which Sword uses to articulate the tools necessary to build your own personal,
virtual “House of Writing”. BASE encompasses the following 4 areas of focus:
B – Behavioural Habits
A – Artisanal Habits
S – Social Habits
E – Emotional Habits
These are explored in their own chapters, by reference to a considerable
empirical study on which the book is based (see what I did there?) The
empirical work is outlined in detail in the introductory chapter (itself a
beautiful meta-model of how to write about methods in a way that is accurate,
clear, and engaging). Sword explains how she undertook two forms of data collection,
with a view to demonstrating the contrasts between two different, clearly
demarcated categories of academic writer – (1) “Exemplary academic writers”
chosen by Sword, and interviewed in-depth, and on-the-record, and (2)
“Lesser-known academics from underrepresented cultural, ethnic, and gender
minorities who have survived, and even thrived, in academe” who had signed up
for, and attended Sword’s writing workshops, and were asked to complete an
anonymous questionnaire (n = 1223: faculty members, PhD students, postdoctoral
researchers, and independent scholars).
Sword explains that she had assumed she’d be able to make authoritative
claims based on her data, about the writing habits of successful writers, and
how these compared and contrasted with those of less confident writers, who
identified themselves as in need of support (and therefore signed up for a
writing workshop); as well as being able to draw conclusions about the
different writing practices of, for e.g. different genders, different geographical/cultural
demographics, different academic disciplines. She quickly found, however, that
rather than identifying such patterns in the writing practices of her
respondents, she was “struck by the richness of their difference”, in a way
that is highlighted acutely in this account:
“The futility of such scholarly typecasting struck me with particular force on the day I interviewed two colleagues who work in the same discipline and had recently been awarded the same prestigious research prize by the professional society to which the both belonged…they matched each other as closely as any other two academics in my interview cohort. Yet their personal affects and attitudes towards writing could hardly be more different. One was self-confident, the other self-effacing; one was earnest, the other ironic; one clearly loved to write but spoke mostly about the agonies of writing, while the other clearly struggled to write but spoke mostly about its pleasures.” (Sword, 2017: 3)
Rather than shoehorn her data into an awkward “how-to” of academic
writing practices. Sword therefore presents a wide-ranging discussion on the
numerous, often resourceful, sometimes dispirited and stodgy treacle-wading
ways in which academics at all levels, in all areas of academe negotiate and
engage with the affordances and contingencies of writing within (and often in
spite of) academic and personal lives.
I found this book a joy to read. It was so heartening to feel that I
wasn’t alone – and that it isn’t only other PhD students, but writers of all levels
of experience, at all stages in their careers, who experience many of the same
highs and lows that I do, and who deal with their own successes and adversities
in a huge range of ways. It was fabulous to have it affirmed that there is not
necessarily a black/white, right/wrong dichotomy in writing practice, but
rather that writing, as a craft, is best undertaken in whatever seem to be the
best ways that suit the circumstances in which the writer finds herself.
At times, I found myself encountering a familiar sensation that some of my own (dis)abilities, and encounters of adversity and oppression (particularly as an autistic, disabled writer) were missing from the accounts in this book: an omission that was particularly noticeable, given the focus built into the book’s methodological approach, on the experiences of writers from other minority groups. This was disappointing in terms of Sword’s (self-identified) aims of representation of diversity, but it didn’t necessarily impede my engagement with, and enjoyment of the book, because I also got a huge amount from the areas and experiences that were covered. I feel that this is simply an argument for more, pluralistic, discussion of the craft of academic writing – discussion that is rooted in, that takes as its starting point, and that engages analytically with, empirical accounts of practice. Writing is so often portrayed as a mysterious, secretive, veiled practice – or as a “talent” that you either have, or you don’t. This book really lifts the lid on this practice. It won’t provide you with a “House of Writing”, but it will begin to provide you with the tools to find the “air and light and time and space” with which to build your own.
I would recommend this book to anyone who,
like me, finds their “voice” through (academic) writing.