Practising Reflective Activism: I messed up, I’ll be better in future…

We all mess up sometimes. Having political consciences, and doing activism, do not make us immune to such failures. But they do give us a responsibility to hold ourselves to account when we make mistakes, and to commit to doing better in future. Yesterday, I made such a mistake. I have decided to write about it here, to encourage others to learn from my mistake, and to commit publicly to doing better in future, and to working to tackle the structural oppression and inequalities that form the context of my mess-up.

My Day Yesterday

Yesterday, I went into my local town for shopping and to meet my mum for coffee. It’s only the second time I’ve been out like that in the last 5 months, and the first time I’ve been out at a weekend, so it was a little confusing and disorientating. There are some things that are now harder about navigating the space as a wheelchair-user than they were before the Pandemic: for example, most of the shops now have queuing spaces marked out on the pavement in from of them. This makes a lot of sense for maintaining physical distancing, but my town is built on a hill, and has lots of slanting pavements and cobbles. I know the pavements intimately, and am expert in navigating them precisely so that my wheels go exactly where they need to. But now, there are often people congregating where I need to be, and I have to be ready to explain to them that I need the exact bit of pavement they’re occupying because the bit just next to them is inaccessible. I think accessibility is more complex than many abled people believe, and until you’ve actually used a wheelchair out in the “real world”, there are lots of things you just don’t consider. As I’m autistic, I find that the words I need for spontaneous social interactions are often hard to find too – so I’m having to memorise appropriate “scripts” for finding my way around this new landscape.

But some things are now much easier as a result of the Pandemic. Many shops have changed their layout to enable physical distancing – removing lots of displays, and creating one-way systems in their premises. This makes such places much more accessible for me – given my wheels, and my “challenged” (read: virtually non-existent) sense of direction. Indeed, I may (or may not) have spent extra time in such shops yesterday, purely for the purpose of doing laps – the sense of freedom and sensory joy, after months spent in my tiny flat, was just wonderful.

I had also forgotten quite how exhausting “outside” can be, and if I’m honest, I think I overdid it a bit. It was at the end of this tiring afternoon that the event alluded to in the title of this blog took place – what follows is a “confessional” reflective account, and a public commitment to try my best to do better (and to be better) next time…

My Mistake

I had finished my shopping, and was ready to get back in my car and head for home. As I say – I was tired. I was about to go pay for my parking when I figured I needed to use the bathroom and couldn’t wait to get home (a 5-minute drive, but augmented at each end with around 10 minutes of hoisting my chair in and out of my car). Like many disabled people, I don’t generally get a lot of warning when I need to use the bathroom, so I headed into Marks and Spencers (other chain-stores are available – though in my hometown, M & S is the only one with an accessible bathroom – “This is not just any bathroom…” etc etc). When I got to the bathroom area, I found that the accessible bathroom was occupied. For context – I should explain that there is also a “Ladies'” and a “Men’s” bathroom, as well as a totally separate room for changing babies (though there is no Changing Places facility). I then began the familiar experience of waiting…and waiting…and waiting, while listening to the voice of a female adult and a female child inside the accessible bathroom. People came and went from the other bathrooms, and I sat and waited. As I said, I don’t get a lot of warning when I need to use the bathroom, and I was getting anxious (as well as feeling the usual frustration and humiliation at the structural reminder of my “difference”, my “otherness”, and my social inferiority). As I waited, I reminded myself that I should not be judgemental. There was probably a completely legitimate reason why the people occupying the accessible bathroom were taking (what felt to me like) an inordinately long time. I generally take longer than most abled people when I use the bathroom myself, and I should be the last person to police other people. And I reaffirmed to myself that not all impairments are visible, and no one has appointed me Bathroom-Judge. But I was getting more and more anxious, as well as distinctly fed up that this was realistically the single only bathroom available to me as a wheelchair user in the town (there are actually 4 other accessible bathrooms in town – but three are in cafes/restaurants where you’re expected to purchase food/drinks before you can use the facilities, and one is in an independent department store at the other side of town, on a very inaccessible street). So I waited, and checked my prejudice…

Then, a woman and girl (around 7 or 8 years old) came out of the accessible bathroom. Usually, when this happens, those coming out of the bathroom make brief eye contact with you as they leave – if it is someone who feels guilty for having used the bathroom when perhaps they didn’t need to (e.g. abled people who “sneak” into an accessible facility because the place in general is quiet, and they don’t expect a disabled person to need it, or a parent with multiple young children), they look apologetic, and sometimes even say “oh, sorry”. Or if it’s another disabled person, there’s a kind of expression of comradeship as we both acknowledge the experience. But in this case, there was nothing. The woman and the girl just ignored me, and continued their conversation as they walked past me.

And this is when it happened, the thing of which I’m quite ashamed…

…I was so fed up at having had to wait, and at having been totally ignored, that I called after them “Couldn’t you just have used the regular bathroom?”. It was a split-second decision, and I was inside the bathroom with the door locked before I fully appreciated that I’d spoken. I don’t think there was any reply, but I don’t know for sure.

It was at the point when I was on my own with the door locked that I realised how in the wrong I had been. I was angry, fed up, anxious, and tired – that is true. There are not enough accessible bathrooms in public places – that is also true. Lots of people use accessible bathrooms for convenience, when they could go to the effort of using regular bathrooms – that is also true. And other social groups apart from disabled people are not adequately catered for when it comes to access to public bathrooms (parents of small children, trans people – as just two examples) – that is certainly true.

These are all political concerns, and should be focuses for activism (indeed, they are – see, for example, the campaign for Changing Places facilities, that has seen recent success). But they should not have influenced my individual behaviour towards the woman and the girl in that moment.

My actions were a “venting” of personal frustration, but they were probably socially and politically harmful. If the woman and girl were using the accessible bathroom illegitimately (for convenience or added privacy, or to jump a queue, maybe) then my calling after them in a challenging and confrontational way is unlikely to have made a positive difference to their future behaviour. It probably just confirmed prejudices about disabled people. Indeed it’s possible that if I had just sat and waited for them to leave without saying anything, they might have reassessed their own behaviour, and felt guilty themselves – and I’d have made a greater political intervention by staying quiet. But – far worse than that in my view – they may have had an entirely legitimate reason for needing to use the accessible bathroom. And my behaviour may have simply added a long list of times when they have not been believed, or have encountered hostile responses for using accessible facilities. I may have contributed to existing fears they have about accessing public places.

My Commitment

I have no way of knowing what their reasons were for using the accessible bathroom (that is exactly the point – I had no way of knowing), or what impact my words had on them (I was all ready to apologise when I came out of the bathroom if I had seen them – but I didn’t). But I do know what kind of person I want to be – I want to be a person who contributes to making the world a better, safer, kinder, more accessible place. Yesterday afternoon, I briefly failed to be that person.

Next time. I will be better…

#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.

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

[Side note: Happy New Year! I’ve decided I’m going to try to write a blog summarizing my PhD work, and related thinking, every week. Wednesdays are traditionally my day off, so now seems as good a time as any to get going…]

Why do we obey the law?

This is probably one of those jurisprudential questions that verges on the unanswerable, perhaps precisely because there are so many possible answers. And indeed, the question of obedience to the law has been debated extensively among legal philosophers (see, for example, the edited collection of readings on “The Duty to Obey the Law” by Edmonson, 1998). My aim here is not to try to provide an answer to this philosophical question.

But I have been reflecting on what “accountability” means in the context of the Mental Capacity Act 2005: taking as my starting point the perhaps rather simplistic assumption that if a law exists, its impact should be discernible in the consequences of its observance, but also of its transgression. I.e. If you break the law, you should hold a reasonable expectation of personal consequences as a result.

As I have been working through the analysis of my dataset for my current project (a textual ethnography of research ethics application processes for research involving participants who lack the capacity to consent – engaging ss.30-34 MCA 2005), I have noticed how many times I’ve referred to the “responsibilities” of the researcher – their “obligations” and “duties”, under either the law, or other forms of professional or institutional regulatory governance frameworks. And this has led me to question the nature of these responsibilities – particularly, what happens if the researcher fails to meet their legal obligations under the MCA 2005?

It has seemed rather difficult to identify any single, universally applicable answer to this question. But here are some of my findings and thoughts so far:

  • Institutions sometimes refer to the MCA 2005 in their ethics application forms, but they don’t always. When they don’t do this, they direct researchers working with participants who “lack capacity” to NHS research ethics protocols. If they do refer to the law, this may be to inform the researcher (sometimes erroneously) as to what the MCA 2005 “requires”.
  • The MCA 2005 sets out, in general terms, what is “required” of the researcher (although it is necessary to consult secondary legislation, and additional legal and professional guidance documentation for definition and clarification).
  • The MCA 2005 states that research that does not abide by the requirements set out in the Act is “unlawful”. However, it makes no mention of any consequences arising directly from such illegality.
  • I have been unable to find any cases where researchers experienced legal sanctions as a direct result of failure to adhere to the MCA 2005.
  • It seems most likely that consequences of failure to follow the Act may arise indirectly, depending on the type of research undertaken, and what this involves for participants. For example, if research involving the administering of a specific treatment is undertaken involving participants who lack the capacity to consent, and the framework set out in ss.3–34 MCA 2005 are not followed, the research itself is “unlawful”. This means that the treatment administered was given without the required “best interests” process set out elsewhere in the Act, and would therefore constitute assault/battery. It is perhaps harder to think how this may apply to research that is less invasive (e.g. research involving interviewing) – although as the obtaining of “intrusive” personal data via unlawful research may be construed as fraudulent, it is likely that redress may be sought via fraud, or data protection legislation.
  • My analysis of the full legal, ethical, professional, and institutional regulatory frameworks that apply to researchers working with participants who lack the capacity to consent has shown that the majority of “consequences” relating to transgression of the framework set out in the MCA 2005 are to be inferred from institutional/professional regulation mechanisms that indirectly invoke the Act – e.g. Research Governance Codes of Conduct that require researchers to follow any law relating to their proposed research undertakings. As such codes form part of the studentship/employment contracts existing between the researcher and the institution, personal consequences (e.g. dismissal for gross misconduct) are likely to be swift and devastating to the researcher.
  • This last point reinforces, and reminds me of how important it is that I research and understand the Mental Capacity Act 2005 as a socio-cultural structure that exists within a complex matrix of social domains. In this instance, the “reach” of the MCA 2005 is perhaps felt most acutely, not in the Court of Protection, but in the university Human Resources department.

I have also been trying to identify wider consequences of failure to adhere to the MCA 2005. The Act brought with it a new criminal offense – that of “Ill treatment or wilful neglect of a person lacking capacity” (s.44 MCA 2005).

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

Another case of interest to my own research (that relating to Advance Decisions to Refuse Treatment) is that of Jillian Rushton: a retired nurse who received Clinically Assisted Nutrition and Hydration via a feeding tube following a brain injury, contrary to the provisions of her ADRT – seemingly due to a failure of healthcare professionals/organisations to maintain and communicate her ADRT. The case (NHS Cumbria CCG v Mrs Jillian Rushton (by her Litigation Friend) and Mr Tim Rushton [2018] EWCOP 41) is reported here (https://www.bailii.org/ew/cases/EWCOP/2018/41.html) – though is of limited relevance to the issue of sanction for non-compliance with the Act, because as Mr Justice Hayden made clear in the judgment, he was not asked to consider matters of responsibility for failure to adhere to Mrs Rushton’s ADRT, and did not address this in the judgment.

Lastly, for now, my own ethnographic work in the Court of Protection identifies a consequence for Local Authorities of failure to adhere to an aspect of the MCA 2005 that has widely been interpreted as a bureaucratic burden for LAs – the Deprivation of Liberty Safeguards (DoLS). On more than one occasion, hearings I had planned to attend were vacated at short notice, at the request of a Local Authority that was unprepared for the hearing. However, on one occasion, the LA in question assumed the judge would agree to vacate, and therefore did not attend the hearing. This was not, in fact, the case. The judge had not agreed to the request to vacate, meaning that an (unsurprisingly short and unproductive) hearing took place, with costs being awarded against the Local Authority.

I would like to expand this list of “consequences of non-compliance with the MCA 2005” – by adding themes, and details, and by considering the impact of non-compliance from multiple perspectives.

If you have thoughts or experiences to add, please get in touch!