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

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

My Day Yesterday

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

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

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

My Mistake

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

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

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

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

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

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

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

My Commitment

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

Next time. I will be better…

“Crip Time” – and the Theft of Disabled Pleasure

“Crip Time” (Samuels, 2017) describes how time can operate as a site of loss and of alienation, but also of liberation for disabled people. The concept resonates extremely strongly with me – as the combination of my physical impairments along with my seesawing tendencies towards inattentiveness and hyper-focus mean that I have always struggled to conform to normative social constructions of time – particularly regarding the notion of “work-life balance”. Here, I want to outline what I experience as one of the cruellest implications of my disabled relationship with time – the loss (theft) of “free time” – and of joy and pleasure.

My first memories of experiencing the inequality of “free time” was in junior school. It was common for my teachers to arrange the day so that we would be expected to do “work” (English, Maths etc) in the morning, and “fun” things (creative work, topic-based projects etc) in the afternoon. This sounds great, except for the fact that you had to finish your “work” before you were allowed to move onto the “fun” stuff – even if this meant you were sitting there “working” most of the afternoon, while others around you had “fun”. The feeling of being punished for working too slowly was exacerbated by the fact that being made to “work” during “fun” time was often required as an explicit punishment for others who had deliberately misbehaved earlier in the day. This set a pattern for my life that persists to this day – in the sense that I actually perceive many tasks associated with “work” to be “fun” (particularly anything involving writing), and find social divisions between “work” and “life” (and the requirement to “balance” these) to be rather arbitrary. But also in the sense that I expect to take longer than others to fulfil the required amount of “work” before I can move on to “fun” – and feel crushing guilt as and when I try to relax.

Another theft of time I have experienced due to my disabilities seems on the surface to be benign – even compassionate in its motivation, but it can be crushing in its impact on your self-esteem. When I got to grammar school, and was approaching GCSEs, it became clear that with the support and equipment to which I had access at the time, the time it took me to complete the workload required for all my courses, along with the toll this took on my body meant that it was unsustainable (to illustrate – I was allowed unlimited extra time by the exam boards for my GCSEs – my final exam, by which point I was quite beyond exhaustion, took me 7.5 hours). One solution offered was that I should reduce the number of courses I took (and therefore, obviously, the number of qualifications open to me) in order to give me more time to work on “important” subjects. I really didn’t want to have to do this, because it would have meant I got fewer qualifications than my peers (in the extremely competitive, pressurised school environment that was my “world” at that point), and also that I would have to drop subjects at which I excelled – and that brought me huge amounts of pleasure and respite from the painful and exhausting experience that epitomised the rest of my school life, in order to spend more time on things that confused and hurt me – simply because those things were deemed “important” by others. Fortunately, we managed to reject that suggested option for my education, but this meant that I had stuff to prove, and I developed the feeling that I couldn’t allow myself to be seen to struggle too much, as this would lead to me losing out on things I enjoyed, and that meant a lot to me.

Interestingly, extra time to do “work” was also perceived by my peers as an “advantage”. I was constantly verbally abused throughout my time at school, because other students believed I had an unfair advantage as I got to spend longer on exams. They had clearly never spent 7.5 hours deliberately doing something that caused themselves intense physical pain. Doing so is perverse, but it’s a constant feature of my daily life.

Related to this was a battle we had to fight for me to be able to do one of the A-Level courses I wanted (and at which I had excelled for GCSE) because the teacher was concerned I wouldn’t cope with the physical demands of the course (i.e. the amount of writing required). I remember being devastated when I heard that this had been suggested – not least as the teacher who suggested it (my French teacher) had always talked and written about what a “gifted” and “promising” linguist I was, and how I was a “joy to teach” (well, it was my “joy” to learn too). I will always be grateful to my beloved German teacher for fighting my corner, and saying there was no way that I should be denied the opportunity to take French. I did French, German, English (Language) and Music A-Levels, and they were some of the happiest days of my academic life. It frightens me how easily I might have missed out on those experiences.

And then, as an adult, I entered the “world of work”, with the expectation that I should manage my own “work-life balance” around the (to me, completely arbitrary) notion of a 37.5 hour working week. And I ran into problems – because everything in my experience of “work” (loosely defined) to this point had confirmed for me that work takes me longer than other people – and that it is expected to make me hurt almost beyond endurance, and exhausted to the point of spontaneously falling asleep in public. So if my peers spent 2 hours on an exam that took me 7.5, and a working week for those same peers is 37.5 hours – well, you do the Maths. And then people are surprised when I can’t “switch off” – when the guilt induced by “leisure” time makes it not worth attempting, and why I feel like a constant failure.

And because my sense of what is “difficult” and what is “easy” and what constitutes “work” and what constitutes “pleasure” are so at odds with much of the rest of society, I can end up losing out when people try to be helpful too. It could be that my (paid) work requires me to make phone calls, or write emails, or do any of the other tasks that my autistic brain finds bewildering, exhausting, and painful – and this could be on a day when my unruly body is already burning and stinging and swimming in treacle. A “normal” person would be curled up in bed being looked after. But it isn’t so easy to play the “sick role” when this is your default setting. Society runs out of patience very quickly. The thing that might help me could be writing an essay, or working with my research data – my ability to hyper-focus on a topic I find interesting and engaging is a particularly useful analgesic. It would actually be helpful to my “recovery” to do a task that others would regard as “work” – and it’s good for my “self-esteem” too. But if I try to ask for help with the specific things I can’t do (the phone calls etc) then I know from experience that people with power over me will try to “help” by removing the “burden” of the things I enjoy and do well – so I have to struggle through the impossible things, in order to be allowed to do the good things. And I also know I run the risk of being found guilty of not playing the “sick role” properly – like the person with clinical depression who would benefit from going to the pub with friends, but would also face disciplinary action at work if they were seen out of their house while “off sick”. Being sick gives others the right to control how you spend your time – and being disabled makes this a default setting. And it all just emphasises to me that I “don’t fit” – that I’m faulty.

The liberatory struggle at the centre of our disability politics needs to encompass a fight for our freedom to experience joy, and pleasure, and rest – to dream, and to hope, because these experiences are part of what it means to live a fully human life. If all we gain from our struggles is the right for individuals with impairments of body and mind to spend their life in a constant loop of work, illness, and exhaustion – running to keep up with a pace at which others walk,, then we really aren’t aiming high enough.