Public Service Announcement: On taking myself seriously…

…as a disabled, chronically ill autistic person doing their final year of a PhD. And setting boundaries accordingly.

I thought I was sort of kidding when I said my final PhD year would be so tricky that I’d be able to do nothing but eat, (overwhelmingly) sleep, and (occasionally) wake up to write thesis. (And even ‘eat’ and ‘sleep’ aren’t going so well currently.) I don’t think that people have understood what I meant by doing nothing else, though. Or what ‘rest’ means for me, and how much of it I have to do. (I just did some laundry, then had to go to bed for so long to recover that I’ve lost all of today’s functioning work hours.) It’s really looking like my executive function and energy are going to be so tricky, under final year stress, that I won’t be doing much of anything else, if I want to produce a thesis at the end.

And here’s the unhelpful thing. I’m really terrible with boundaries. I will agree to do almost anything when my enthusiasm for a subject or a thing gets going. Example: I said I’d make a list of activist disability resources for an activist group I’m in. A quick task, I thought. Having now spent hours on this and not got very far, I’ve realised too late that volunteering for this was a mistake. But I got excited. I love putting up my hand and saying “I’ll do that!” At the time, I always completely believe I can and will do that thing. I love doing things for other people. I love when the people around me are happy (or, y’know, when they get the opportunity to learn more about structural barriers faced by disabled people in society)…

I’m very privileged. I have a spouse who does almost everything, and other privileges that really help. Still doesn’t change how uneven my rest:work ratio has to be right now. Or the executive function/health issues. It definitely doesn’t help with not being good at boundaries. And various other things that I have to address if I’m going to finish this thesis.

Otherwise, though, I’m setting my boundary here. I suspect that I will not be able to commit to any groups, committees, planning structured activity, campaigning, activism, or anything else that will take time away from my PhD, in the coming year. If I agree do anything, it will be things that are a one-off – low pressure and low activity – on a day when I know I will be able to do them. (And that will be only with groups where my boundaries are respected and understood.)

So this is the plan: Seeing the people who mean the most to me, when I can. Doing a lot of my own level and type of ‘rest’, which is extremely dull and I will have nothing to talk about (so it’s maybe a good thing I won’t be seeing many people). Attempting to respect the way my wonky brain and body are working right now (what they need is what I do). And otherwise: writing the thesis. Even if I only have the energy to do that an hour or two a day right now. (With enough of the ‘respecting of brain and body’ thing, that will get a bit better.)

I’ve already started pulling back (officially) from activities that require anything structured from me (including just things like writing an email occasionally). I will be doing this with more activities.

Yes, people may quietly (or vocally) think I’m lazy. Yes, I may fall off people’s radars, and never get offered opportunities again. Yes, it could affect my employment prospects. But let’s face it – this is what happens to disabled academics.*

[Oh, and I’ve said elsewhere (on Facebook) that I’m no longer answering the questions “when do you finish?” and “what are you doing afterwards?” Thank you for respecting this!]

I’m sorry! I know I shouldn’t apologise, because I’m not in control of this, I didn’t know it was going to happen, and who can fathom the mysteries of non-normative bodies and minds sometimes… But I was going to explode if I didn’t apologise just once. 😀

Endnote: I know how many people will want to reply telling me that this is the situation for all PhD students. I would consider that to be invalidation. (Here’s what I wrote on epistemic invalidation recently.) So I’d rather you didn’t say that (it’s entirely your right to think it, of course). Much more acceptable instead: Cheery waving from afar. Offers to chat to me on (text) chat** occasionally, so that I don’t feel quite so much like I haven’t spoken to anyone all year. Most importantly, understanding that this is a real, serious thing for me, and still being there when I’m coming back to life after I finish. (And because I’m doing this, I will finish.)

Probably won’t be responding to comments on this one. But thanks and I still love you. 🙂

*As always there are many interesting conclusions to be drawn here – normalcy in academia, disability in academia, general conditions in academia… and lots of things about how disabled people have to over-perform to succeed and what happens then… I’m not currently ‘up’ to writing about all of that. But I look forward to a time when I’ve recovered and I am, and can bore you all with all of that again. I bet you do too. 😉

**Face-to-face Skype, while better than the phone, can be dreadfully draining when I’m working. Again, I am sorry.

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Inconvenient Bodies

My body is inconvenient.

When I’m moving house they say: only flats with stairs available. You want more accessible? Wait longer; pay more; move elsewhere. I scour the tube map – I can get on here but I can’t get off here so I’ll have to get the bus here and do these uncomfortable bounces around London to get where I need to be… And then I get to the meeting and they say, oh, sorry, it’s hard to find a pub without stairs – can you just do a few? My body doesn’t fit the London world.

In the ‘academic careers’ session they say: Be ready to go anywhere in the world, at short notice, for any job. I look down at my weak, dislocation-prone, support-requiring body. I think about the disability systems that I would need to fight my way into, in every new country (or even new city) I went to – social care services and work support and funding. I think about the adjustments that universities would need to make for me. I remember the stories of disabled academics working in cold huts on the edge of campus because their departments’ offices are inaccessible. My body doesn’t fit the academic world.

When I’m attending autism conferences they say: Yes of course we’re accessible. But… they’re not. I cram my body into narrow hallways, am shoved around by crowds, run over people’s feet. I worry about old buildings and wonder whether I should risk my physical health for the benefit of neurodiversity support. I get stressed. I have meltdowns. My body doesn’t even fit the neurodiversity world.

So I choose. Miss out on life entirely — or fit myself to their worlds, contorting and twisting and breaking my body to fit the spaces where normalcy reigns?

Lately I’m thinking and writing about the embodiment of disability discrimination. I don’t think it gets written about enough. Disability discrimination does not exist in an interpersonal vacuum. It oppresses the body, and/or the mind. Often, it’s not a case of “You can’t come in,” but more a case of “Come in, if you can twist your body and mind into our shapes.” The square peg squeezes into the round hole… and it’s never quite the same shape afterwards. My body is inconvenient — but in the end, to save them discomfort, I allow the the inconvenience to become mine. And the pain, and the physical harm, and the long-term effects on my health (physical and mental). The embodiment of the oppression.

Disabled readers: How do discrimination, disablism, inaccessibility and exclusion affect your body and mind?