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?

 

Fighting to Protect University Mental Health/Counselling Services

I have an article up at the PhDisabled blog, about the media debate currently going over student mental health services in the UK and how they are overstretched and underfunded.

Disabled PhD students are dealing with a lot at the moment. Apart from the ongoing academic disablism that we always face (see the #academicableism feed for many, many examples), there are specific situations dragging us down during this age of austerity. Student Finance England is finding ways to delay and turn down students’ applications for Disabled Students’ Allowance. (Anecdotal evidence includes my own fight to get it back – evidence of my disability that was always accepted in the past, has this year been refused. Talking to others, it seems that I’m absolutely not the only one.) Tuition fees are rising, which further excludes already-excluded disabled students, since disabled people are among the poorest people in society and are only getting poorer under the current government regime. And now there’s a crisis in the funding of mental health and counselling services based in universities.

The protection of our services at universities is a priority in these days of increasing exclusion – especially mental health/counselling services. Not all students with mental health problems would consider themselves disabled, but many would. As I say in the article, UCAS evidence suggests that increasing numbers of people with long-term mental health problems are applying to university in recent years. Meanwhile, non-disabled and disabled students alike deal with the mental health difficulties that can arise from stress at university. And disabled students face a whole lot of stress.

That’s why I’m arguing here that we need to talk about mental health services at universities and how they are under-funded. Unlike some university representatives, who apparently would rather we didn’t.

Cross-posted to Uncovering the Roof

Derailing

I wanted my first proper ‘return’ post to be about something meaningful. The way Asperger’s has been (possibly incorrectly) related to the shooting in California, and what that says about the Othering of neurodivergent people, for example. Or the cuts to Disabled Students’ Allowance which are going to further exclude a group of students who are already extremely marginalized in academia. And hopefully I’ll come back to each of those topics. Continue reading