Structures remain the same

I’m sitting on the floor of our office with my back against bookcases, facing our desks, laptop on my knee. I wondered if a change of perspective might shake me out of this current fug. It hasn’t.

Sometimes, when I’m feeling fatigued (as I often am), when my mind is clouded (as it often is), and when frustration and despair dominate (as they often do), I lie on the floor here, to give my body and mind a break. I have indicated previously that things have been tough, and they still are. The last two years have been relentlessly so. I was diagnosed with a long-term, likely permanent, chronic illness after (as is the way with our medical system) having increasingly debilitating symptoms over a long time. I’ve vaguely talked about this and moaned about the consequences quite a lot, but at the same time I remain conscious that whatever you throw out into the public domain, you cannot pull back. So the place I’m in is somewhere between wanting to write about my feelings and experiences, while also wanting to retain some privacy and not be labelled (or used!) in particular ways.

As I’ve reluctantly adjusted to my new reality, I’ve become increasingly angry with notions of accessibility, inclusion, and equality, particularly where hidden disabilities are concerned. A sentence by Kristie De Garis from an interview she did with Elspeth Wilson a few months ago has stuck with me: ‘Representation is welcomed, but the structures remain the same’. The structures remain the same. This is true of so much representation, be it neurodivergence, disability/illness, sexuality, gender… systems climb all over themselves to look inclusive and representative, but by god you better be willing to jump through more hoops than you’re likely capable of to participate. And remember to look grateful.

The amount of additional admin and advocacy I’ve had to do because of my chronic illness is staggering, it truly is, and it’s in every walk of life. Want reasonable adjustments in your work or other aspects of your life? Be prepared to go through every symptom of your condition(s), and its impact, multiple times, with people who are not medically trained. If there is something that will make your life slightly easier, you’ll discover that there are numerous steps to go through before you can access that thing. When you point out that the people who are, you could argue, the least capable of taking on these extra burdens but must do so in order to reach everyone else’s baseline, you are told that yes it’s terrible isn’t it but sadly just the way it is. People who I don’t doubt are good and with all the right values and opinions, do absolutely nothing to change these systems, and because of this don’t realise that they’re actually helping to uphold them, reinforcing and reproducing inequality. Representation, inclusion, and accessibility seem to be box-ticking exercises for so many institutions, and those who might have the power to change something shrug their shoulders and lament how terrible it is.

On top of all of this, we had some very distressing and upsetting family news a few months ago, which I intimated in my last blog, things they don’t tell you about grief. While I (we) have had time to adjust to this, the situation and the resulting emotional toll will continue to run in the background, colouring everything we do.

I hate to write blogs that are so lacking in joy or hope, but then that’s the reality and I’ve always hated those people who insist on slapping a silver-lining on every cloud, anyway. For me it’s essential to be able to say ‘everything’s massively shit and it’s okay that I’m really sad about that’ without any race-to-the-bottomers going, ‘well at least you don’t [insert suitably weird fucking thing to say here]’.

In an effort to drag you part way from the dark depressive cloud I’ve pulled you in to, there are some small things that have been cause for a smile lately, and so I’ll leave you with those. The first: I was invited to a Royal Garden Party this year, nominated by Sue Snowdon the (then) Lord Lieutenant of County Durham. Despite me being a bit of a republican, it was lovely to be acknowledged and me and The Man had a nice time in the big posh garden, eating tiny cakes in the sunshine and watching people stare at the royals. We went to see Hamilton while we were in London, and it was marvellous. Second: despite all the difficulties which impact my health daily, I am enjoying the PhD reading and finding it all very interesting. Third: a friend of ours whose cancer returned recently has successfully got through some pretty scary and intensive treatment and seems to be over the worst of it. And lastly, we finally got around to tidying up our garden, which is extra important to me with being stuck in the house a lot more. A little blackbird (who I’ve called Norman) visited me often on one of the days I was sitting out there working, and he comes back regularly, which is lovely. I will leave you with some pictures of him.