A Day in the Life of a Spoonie-Crip: Notes from the Tightrope

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:

The Physical

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.

The Emotional

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.

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

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

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

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

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

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

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

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

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

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

Exciting news – Launch of new project

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

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

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

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

Life in general

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

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

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

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

My experience of working from home; and why separate is not equal.

Earlier today I had a new experience. I delivered an Autism Awareness training session from my flat. I’ve been writing and running training courses on autism for over a decade, but today was the first time I’d done so using technology to deliver the session from home. This came about due to the restrictions we are all currently experiencing, arising from the Coronavirus Pandemic, and it generated for me a list of thoughts about what went well, what went not so well, and what we might do differently next time. I’d thought I might write up this experience – envisaging a sort of “How To…” contribution to the growing body of literature about “remote” pedagogy that is understandably sprouting up in the fertile ground of Lockdown. I had thought that I’d share how we navigated technology across a range of different platforms with varying capacities for running the software we were using, and how we communicated with people who had little experience of using this technology to get them logged onto the session, while not being able to see what they could see on their version of the platform. I thought I might share how disconcerting it feels not being able to see people’s faces fully as I talked to them, and how odd it felt to have a bunch of strangers in my home. I might well write such an account if I feel I have things to add that haven’t already been written about online interaction in the circumstances in which we currently find ourselves.

But there is another aspect of my experience that I didn’t expect to affect me in the way it did. There is a part of working from home in this otherwise very “public” part of my various work roles that I hadn’t even considered in my preparation for this afternoon, and in my angst-riddled role-playing about all the myriad ways in which things might not go according to plan. And it is an experience that my mind is left turning over, and wondering what I do with it – and what I do about it.

Funnily enough, this particular experience was one of liberation. It happened when I realised, as the session began, and I started to talk, that the participants could only see my face. This mattered because, unlike in face-to-face sessions, this meant that they couldn’t see my wheelchair. These were all people (with the exception of my colleague who was facilitating the session) who hadn’t met me before. They knew me only as a one-inch by one-inch square on a screen, and that was such a liberating feeling. I hadn’t realised until then quite how exhausting it is holding all the feelings that result from being on the receiving end of the Able Gaze. Other visibly disabled people will know what I’m talking about (and I know other groups of visibly “different” people articulate similar phenomena). It can be the quick-look-and-look-away, as people go out of their way not to be caught staring. It can be people falling over themselves to make it clear that they don’t actually see the chair (what?). It’s the ways in which people make exaggerated hand gestures as you pass – waving you on. Or the distance people leave around you, as though you might run them down – and how parents shoot out their arms to protect you from their incoming children (or vice versa) – do they realise they are taking part in this commedia dell-arte? Or it’s the silent wall of wondering – when you don’t know what people are thinking: if they’re thinking some of the things that other people will come out and say – like “what’s wrong with you?”, or “how long have you been wheelchair-bound?” or “have you got a license for that?” or “wow, you really have a job?” or “do you have anyone with you?”. Or if it’s the more hostile thoughts – like the people who will appear to offer to “help” you, as an opportunity to try to grab your bag, or your boob. It’s the people who explain that people like you are scroungers – not you of course. Just people like you. It’s the exhaustion of being constantly seen – until it comes to a time when it would be good if people did actually see, or think about, people like us; or factor in our concerns into their planning and shaping of society. Then we are very much not seen. The paradox of hyper-visible invisibility.

Anyway, this afternoon, sitting at home in front of my computer – none of these aspects of the Able Gaze was getting at me. I was an inch square in a grey box – just like everyone else. I even had to make verbally explicit that I was a wheelchair-user when it was relevant to a point I was making. It was a powerful experience. And the particularly striking thing is that while I knew I noticed all of those phenomena, I hadn’t appreciated quite how much of my time is spent adjusting for the ways in which they dart through my mind. And I hadn’t realised quite how very exhausting it is.

And then I thought, for just a very little while – wouldn’t it be heavenly to be able to work like this all the time! Wouldn’t it be lovely to be free of the Able Gaze! And then I got angry. Because why on earth should I retreat like that? We may all be experiencing the circumscribing of our opportunities to take up social space right now. But why should I be welcoming this as a longer-term solution to the un-expecting, uncomfortable, or hostile reactions to the fact that I navigate the world by wheels rather than legs? It is frankly terrifying how easy it is to succumb to, often seemingly benign, oppression – simply because it is the more comfortable solution. But that is unfair, and unjust. Enforced separateness is not equality. It never has been, and it never will be.

This experience has reminded me of the ways in which I share with many, many other individuals and social groups the discomfort, and the danger that goes with being visibly “different” – with daring to flaunt our transgression of society’s norms in society’s shared spaces. It has reminded me of how much work we have to do, before society is a truly safe and equal space. And it has also warned me of how very easy it is to settle for “separate” – when in fact, nothing other than equal should be acceptable to us. Ever.

#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.