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.
Today – 3rd December 2020 – is designated by the UN as International Day of Persons with Disabilities (#IDPWD2020) and this year, we as a global society are asked to focus on ‘invisible disabilities’.
Invisible to whom?
‘Invisibility’ is a facet of disability, and of disabled experience, that is all too familiar to those of us within disabled communities, as we are aware of the challenges experienced by those of us whose impairments do not cause the physical deformities, scars, or other outward signs that the general public seems to expect of ‘disability’. Indeed it seems too that the rest of society is slowly catching up to the existence of such impairments – with many accessible toilets in shopping centres, supermarkets, and coffee shops having signs on their doors reminding customers that ‘Not All Disabilities Are Visible’. This certainly seems to be a concern of the moment.
Such growing awareness of the existence of ‘invisible disabilities’ is certainly to be applauded, if it prevents seemingly ambulatory disabled people with Blue Badges (parking permits entitling the holder to use accessible parking spaces) from being harassed or abused in car parks, or enables people to access facilities and adjustments to make life easier, without the anxiety that requesting or using such measures will be met with disbelief or hostility by self-appointed gatekeepers. But, as with so much of how the non-disabled world views ‘Disability’, the concept of the ‘Invisible Disability’ seems to have been constructed as an individual issue, located within a disabled person’s body-mind, and in a socio-political vacuum. The issue rests with the subject, not the viewer.
However, when I think of ‘Invisible Disability’ I consider another aspect of ‘invisibility’. I think about how much of my life as a disabled person, and how many of my experiences relating directly to my multiple impairments, seem to exist in a parallel world that is invisible to – or hidden from – non-disabled society. As an autistic woman who is also a wheelchair-user, I straddle the boundaries between ‘invisible’ and the ‘ultra-visible’ impairments, and I am acutely sensitive to the ways in which the ‘Able Gaze’ can shape one’s experience of disability (I have written about it – here ). But I am also mindful of a different aspect of the ‘invisibility’ of disability.
I remember discussing a trip to London with an acquaintance. I complained about unreliable transport, and about how complicated I found it trying to establish whether specific train or Tube stations were accessible. She replied with surprise – ‘Doesn’t everywhere have to be accessible now?’. I have similarly been met with shock when I tell friends I am charged on average 2.5 times the standard rate for a taxi journey. Conversely, members of the public engage me in conversation and make it clear that they assume I live in Local Authority funded accommodation, I am not in employment, and that the benefits and social care support I receive are considerably more extensive than those I do in fact receive. Disabled existence is a mystery to large swathes of non-disabled society, and the challenges and limitations that inaccessibility places on life with impairments are invisible to the mainstream majority. For some disabled activists, such as myself, sharing our experiences (such as via blogs or social media) is a key aspect of our activism – precisely as an attempt to make the invisible visible – but this comes at a cost, and it is always incomplete. I am relatively open about my impairments and their impact on my life, but when it comes to the most challenging impacts – the moments of despair, of disgust, of hopeless, defeated sobbing: the moments when existing in a world that is not designed for me, that views my presence in it as an unfortunate encumbrance, seems like too much, like too high a mountain to climb – those moments remain hidden. They are invisible. And while they remain invisible, I am on my own with them. They are my challenges alone.
Open Justice – A step towards liberation
It is my view that society should be made aware of how it treats its disabled members – and that ‘social invisibility’ is a form of willful ignorance, and an unjust privilege. Oppression thrives in darkness, and it is most efficient and effective in silence and in isolation. It is for this reason that I am passionate about the importance of transparency in terms of the legal and political policies, procedures, and bureaucracies that shape disabled existence in our society – because shedding light on such structures is one way in which they can be held to account, and injustices embedded within them can be dismantled.
This is why I am proud to be a co-founder and co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project (openjusticecourtofprotection.org) – We promote transparency in the Court of Protection: a court that can impact significantly the lives of disabled people who lack the mental capacity to make key decisions in their lives. The public has for some years had the right to observe hearings in the court, but this can be a challenge for people without relevant legal understanding or knowledge of court procedures, and public and press attendance at Court of Protection hearings has been minimal. We therefore support people to access and observe proceedings – e.g. by highlighting the details of hearings people may wish to observe on our website (our ‘Featured Hearings’), by providing information (our ‘Observer Resources’) and by publishing observations, along with posts on topics of interest, on our blog (we have posted over 70 blogs from more than 65 contributors since 15th June). In this way, members of the public – including health and social care workers, lawyers, educators, family members and advocates for disabled people, and ‘interested individuals’ – have been supported to observe the ‘law in action’, and to write about, thereby highlighting, the details of court proceedings, and of the social and political issues affecting the disabled people at the heart of them.
These have included:
A young man called ‘Michael‘ with complex needs, for whom no suitable accommodation had been identified.
The failure of expert evidence as to whether ‘Barbara‘ had the mental capacity to decide where she lives, the care she receives, and with whom she has sex.
Whether a person with Dementia should be medicated covertly.
Whether ‘AB‘ (who has Anorexia) had the capacity to decide whether or not to be tube-fed.
Questions of accountability for the rape of a woman with ‘significant learning disabilities’ (‘KB‘)
Many decisions of significant impact in the lives of disabled people are taken away from society’s sight. Decisions about my own life – my education, my employment, my access to healthcare, and to benefits – have taken place in hospitals, or local government offices, without public access, and often without me being present. Where we have the chance to shed light on, and to scrutinise decisions that shape the lives of disabled people, I suggest we have a strong moral imperative to take this chance. It is by doing so that we challenge the social invisibility of disabled people, and of the experiences that shape our lives.
And social visibility is a powerful step towards liberation.
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…
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.
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.
Today is a challenging day. It’s not particularly unusual, but it is difficult – more difficult than some days. There are lots of things that I am failing to do. However, one thing I can (just about) manage is to speak my thoughts and experiences and record them here. I have two reasons for doing this:
I am in my flat with no one except my cat for company. I feel desperately alone and sharing things here on my blog is one way of feeling “heard”. When I am this weak and incapable, feelings of being “abandoned” and “vulnerable” are particularly acute. The wheels of Disability Bureaucracy grind exceedingly slowly, and the time spent waiting to find out if you will be provided with support you have been assessed as needing can be particularly distressing.
Much experience of disability is absent from collective social consciousness and social imagination. There are disabled people who are unable to narrate their experiences, or to whom a way of doing so that is accessible to those around them remains elusive. Also, the very process of narrating our disabled life experiences involves navigating a tightrope of social norms and preferences, as by definition many of these experiences transgress that which is considered socially “acceptable”. This means that taking up our place in social discourse means necessarily setting ourselves outside of the bounds of social legitimacy – revealing ourselves as the possessors of bodies and minds that are outside of our full control: that disobey our instructions, that wobble, that shake, that leak, that bleed – that fall short. But being “hidden” is unacceptable to me. I have a voice, and I want to use it. I want to take up social space, and I want my needs, desires, and concerns to contribute to social consciousness. Recording my thoughts and experiences here is part of my trying to figure out how I negotiate the personal tightrope, and contradiction that arises from this dilemma.
So here is what my day looks like:
I am exhausted today. I need to clarify that – many people, indeed most people will have experienced “exhaustion” so will think they know what I mean, but I want to be clear. I want to do my best to make sure we are on the same page. I am pretty much always “tired”. I wake up feeling worn out, and my daily life feels like a constant battle against falling asleep. Whatever I appear to be doing, I will also be engaged in this battle below the surface. My attention will be divided between whatever you see me doing, and the efforts of keeping awake, silencing pain, and keeping control of my body. That endeavour in itself is tiring. But that is my “normal”. So when I say that I am “exhausted” I mean that I am experiencing something that goes beyond that “normal”.
If you have ever been so completely physically fatigued that you cry uncontrollably, that speaking makes you feel sick, and that you can’t control your body enough to sit up, or to raise your arms, or support your head, that is the kind of “exhausted” I mean. And as ever, the phenomenon doesn’t just affect that which is visible from the outside. This kind of exhaustion also affects your internal organs – particularly your digestive system. The consequences of this physical malfunction are on the “wrong” side of my own personal “tightrope” of things I can and cannot bring myself to discuss publicly. But managing these experiences, particularly with the level of fatigue that causes them, is in itself exhausting. And my inability to bring myself to describe them in graphic detail causes me problems when this is expected of me to try to access help with them. My advocate, my occupational therapist, and my physio are all examples of people with whom I have struggled to navigate that tightrope. Disabled existence is often a balancing act between protecting my dignity and accessing appropriate support.
I am uncomfortable. I am sufficiently medicated to manage my current pain – in fact, today pain is less of an issue than fatigue. However, I can’t sit myself up comfortably in my chair and part of my back rest is digging into me. Again, not the end of the world, just another thing to deal with. I have spasms in my breathing, which means that I do sharp intakes of breath, or sigh involuntarily. It strains my muscles, I am also freezing cold, as a malfunctioning nervous system means I can’t regulate my body temperature effectively. I have an electric heat blanket on my bed, under which I think I will go and hide when I have finished writing this. I am also hungry (I haven’t managed to eat anything today), and I really want to be able to get washed – but I can’t take care of these needs safely and independently on a day like this.
I feel useless, and I feel like a failure. I should be working – but although I am able to speak these words to my computer in order to record this blog, I currently lack the physical and mental energy and strength to do the things I need to do for work. I need to be able to use a mouse, and to pick up and manipulate bundles of documents in order to do that which I should be doing today. Also, I learned the lesson a long time ago, that if I keep trying to work through days like this, my body just throws worse at me. It keeps shouting at me until I have no choice but to listen to it. I am very lucky, in that I mostly have sufficient autonomy in my work that moving things around and working a “non-conventional” schedule are options. This means that my sickness record does not get too out of control (always a concern when looking, or needing to change jobs), but it does rather mean that my life is basically taken up by working or recovering from work. I do love my work – but there are other things I love to do as well.
I also feel a bit like a fraud. The nature of my impairments means that there are not so many things that I absolutely cannot do. Rather, it is more the case that where a typical day for a typical person may be equated with a “gentle stroll” or a “brisk walk” for me it equates to running a marathon. Similarly, I can do things like “walking” (with two elbow-crutches, slowly, and with a determined grimace on my face) and in my brain that becomes the same as regular walking, so I tell myself that I don’t really need my wheelchair and could walk like regular people if I tried. Then I remember the times when I did used to try to walk like regular people, and I realise I can’t, and I get upset and frustrated with myself.
I feel very sad. Last night I dreamed I was walking in the hills by my old house. I used to do this every day during the first couple of years of my PhD. Growing up, and living in the South Pennines, I have always been hugely blessed to have beautiful green places right outside my front door. Given that most of my work involves sitting at my desk in front of my laptop, thinking, and writing, getting outside and “clearing my head” used to be an integral part of my daily routine. I used to walk three or 4 miles most days. My other passions were competitive distance running, swimming (and generally being in water), and dancing. Sometimes, I dream I am doing these things, or I see other people doing them, and for a split-second I forget that I can’t do them anymore. In these instances, it feels like life is a continuous process of hitting brick walls. It’s painful.
Mostly, I feel overwhelmed. The basics of life require so much more of me than I can manage on days like this (indeed, on any day – today it is just more noticeable). Everything, not least the constant onslaught of bureaucracy that goes with being disabled, feels that much more impossible when you have no fuel in the tank. I’m getting better at putting things aside for a “better day” but the trouble is that they are still there waiting to spoil the “better days”. At least then though, I generally have more reserves to deal with them.
I need to stop now, as I’m too tired to keep talking. Thanks for reading.
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.
[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.