Today I started my second year as a part time MA student. I only joined for the afternoon session because I am currently in a period of recovery from an M.E Crash, and am functioning on very limited energy reserves at the moment.
In order to prevent my complex, multi-systemic nueroimmune illness from spiralling into 'bedbound' status, I have to observe strict daily pacing and spend alot of time resting in between every activity I do - be that the boring stuff, like laundry, or the fun stuff, like spending a week in Wales to help my puppetry team mates open a new shop, or even attending an amazing animal therapy workshop or lecture at university.
Everything you do when you live with a chronic illness comes at a high cost that most able people struggle to comprehend. The toll is literally paid in pain, energy, and time - not just in cash! Living with a chronic illness is a constant battle for striking the right balance between activity and rest, and it's never simple, even after 12 years practice!
Do the thing you want or need to do, and you will undoubtedly spend several days in a state of medical recovery, known as 'payback' or 'a crash'; or, don't do the thing, and watch your life pass you by from the sidelines, or the shadows, existing merely as a passive observer of all the things you could do once, but can't do anymore. It sounds like a choice, but it isn't. If you pace really well, it might occassionally be a free choice, on a good day; but chronic illness is a thief, and the one thing it will always try to steal is that choice!
For me, when it is my choice to make, I tend to opt for the former and 'do the things', believing that life is for living, however limited your time doing that may be.
Having been forced into slowing down and stopping (by the thief!) many times before, I know that option 2 is the greater of these 'two evils' for me personally, for now.
Sure, my physical health suffers alot more when I do the things, and I pay for them all in pain, energy, time and money too, BUT my mental, emotional and psychological health suffers far more when I am forced NOT to do things. The way I see it, I lose either way, so I might aswell have some fun inbetween the bad days, right?! Afterall, nobody likes FOMO. (YOLO!)
There's a saying in the chronic illness community:
'The good days have to make the bad ones worth the fight.'
It's our way of keeping some hope alive, when the fight gets particularly tough or the bad days start outweighing the better ones. Of course it's never really one or the other, but more of a sliding scale that slips regularly - seemingly of it's own accord! - somewhere between the ever tilting platforms. The pin in the centre of these scales is way, way too loose, so the scales tip easily and become much, much more difficult to balance. Even when you do manage to balance them, they will still tip with the smallest breath in either direction, often without any warning.
The problem with this precarious balancing act is that we are never the only ones on our scales. There is a tightrope stretched between the good day platform and the bad day one, and we are often dangerously treading the line, desperately trying not to fall off. Some outsiders see the rope, but do not realise what it is, and do not understand how to interact with it; so they decide to do unhelpful things, such as hang their laundry on it!
Usually remaining oblivious to the additional strain this puts on us as chronically ill tightrope walkers (because afterall, we ARE invisible!) outside influences are infact responsible for the vast majority of our falls!
I know I'm mixing my metaphors here, but just go with it - I'll do a sketch for you later!
[**Inserts Sketch of libra scales/ tightrope/washing line here!**]
One such 'outsider' (or external influence, if you prefer) that regularly messes with my ability to 'not fall off the washing line' is my university. Or, more specifically, my status as a university student.
Don't get me wrong when I say that. My university is excellent. It's one of my favourite places to be, my course lecturer is one of the kindest and most supportive teaching practitioners I have ever had the privelege of learning from, my course mates are all incredibly talented artists and social care practitioners, the campus is one of the most friendly and accessible I've ever encountered, their disability and inclusion team are genuinely fantastic; and yet, I still experience attending university, studying at post graduate level as one of the main contributors to my washing-line-slash-tightrope being 'wobbly'.
Why?
Because I'm not only disabled, I am chronically ill, and there is always some overlap here, but there is still a significant difference too.
The vast majority of support is designed for disabled students. Some of it - which my university is insanely good at, by the way! - centres around more general student wellbeing and support services, industry leading mental health and wellbeing practices, adaptive assessment protocols and a real desire to keep learning and improving their accessibility, diversity and inclusion too.
Infact, as a 'team on the ground' I absolutely cannot fault them and wouldn't want to. The team here on campus are the ones trying to help me stay balanced, and standing nearby to catch me should I fall anyway. That's what it feels like the vast majority of the time. Like if my legs give out or the thief steals my energy, I have a safety net here.
But if it's so good, why do I still feel so unbalanced?
Because the bureaucracy and institutionalism and all the societal systems that I encounter through the world of academia remain brutally hostile to people with disabilities and the culture is still so unrelenting; driven by ableist ideals of eras that have long since been surpassed by humanity generally, but whose ridiculously flawed and inept ideals still haunt the halls at every turn; insisting on carving us all into neat little capitalist serving monsters, forcing us into states of being that continue to oppress and depress and stress out and let down anyone who is even a tiny bit different. Because existing in that world is exhausting! Because that version of the world doesn't resonate with the one I encounter on campus. Or the one I want to live in. Or the future I want. Or the reason I'm there. And my brain, which admittedly is foggy alot of the time these days, can't seem to reconcile these two practically opposing realities at all.
Here are a few examples of what I mean. To call this all 'institutional ableism' seems a bit harsh in light of how hard the team on the ground are trying to get better at it all, so I'm going to label these examples as 'accidental ableism' instead.
The biggest 'wobbler' in my experience is that Pacing - The thing that I and millions of other humans living with energy limiting chronic illnesses HAVE TO DO TO STAY ALIVE - is IMPOSSIBLE at University. It's impossible during a day filled with lectures, and impossible when trying to juggle unrelenting workloads outside of taught time aswell!
But rather than acknowledge this stark and, let's face it, pretty darn obvious reality, universities (or more likely the department for education) installed a system called 'Extenuating Circumstances', which essentially protects students who miss coursework deadlines for 'valid reasons' from being unfairly penalised in their marks. In and of itself, it's not a bad idea and it's clearly needed. But to me, always having to play catch up isn't really the answer, and a better solution would be simply to have a more realistic and more manageable 'workload to schedule' ratio instead. For everyone. Why not let everyone study at their own pace? (The lecturers could do it too, so it's fair!) Or why not have one semester for lectures and the next for coursework, and the next for placements? Why must we do it all at the same time, within X number of modules or months, or Y Thousand words, or Z amount of slides?
What is wrong with giving us a full hour inbetween classes for lunch so we have time to eat, socialise, rest AND deal with our symptoms, instead of always having to compromise atleast 2 of those for the others? What is so difficult about providing a variety of different ergonomic seating and table height/spacing options for those with different needs? Why are all the lights migraine-inducing flourescent bulbs? How come none of our (pretty extortionate) fees have been used to provide facilities that are actually relevant, appropriately stocked spaces dedicated and fully accessible for our specific course?
Why does DSA not extend to covering the ACTUAL COSTS of being a disabled student? And more importantly, who decided what MY NEEDS are 'permitted' to be, and how much they can cost, WITHOUT EVEN ASKING ME?!
Why are the government TRYING to give me a 'free laptop' when they know that model won't suit my needs and I've already got one that does anyway?
Why are they offering to give me £5 towards a £56 each way taxi ride, but refusing to help me fund my petrol so that I can more affordably just drive myself to and from campus, in my own car, that my mobility equipment and coping strategies are already organised into? Where is the common sense in any of this stuff?!
Why, when half the student rooms are not even rented yet, could they not find a way to accomodate me for 1 night per week, so that I could save 4 hours a week travelling back and forth, without having to move into - or pay for but then not use - the on campus student accomodation?
I think there is one answer to all of these questions. And I think
we all know why, don't we?
It's because the systems and algorythms used to determine all of these things only care about the money and the stats, and none of them concider the human costs or consequences of all the things that they cannot see.
They assume a problem they cannot see does not exist. They assume that if I am a part time student, I have plenty of time to do a part time job to subsidise my expenses, which they know my student loan does not come anywhere near close to covering. They believe I am bad at time management if I don't, because they assume that if I am not in lectures I am free to study, to do research, to write essays or create artwork and publish portfolios.
In short, they assume that I am well, and that I am able, and that I get to choose...
But I live with a thief, so I do not. I do not get such a luxury. I do not have the health, the time, the freedom, the energy or the financial security that would give me such a privelege as choice.
This is the real reason that I will inevitably fall from my washing line tight rope:
Everyone is waiting to catch me when I fall - but no-one is picking in the laundry.
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