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.


Medium cross-post: This failed activist is tired of being told what to do.*

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I’m being given a lot of advice and instructions about how to be a good activist recently.

Let’s be clear about one thing, from the start. I am a failed activist. It is a key part of my identity. I’ve been a really terrible disability rights activist since I was 17. I’ve been a mediocre-at-best LGBT rights activist since I was 25. I’ve done all kinds of activism really badly. No one is going to take away my right to be a failed activist. If you recently arrived on the activism scene and have discovered how to do it, I’m really happy for you. You do not get to tell me how to improve. I’ve tried it all, and still failed.

I’ve gone on many marches that have harmed my body and helped no one. Nothing changed. I’ve been to endless meetings that no one ever noticed. The hegemony continued to be the hegemony. I did online action and people laughed at me. The world turned on, oblivious to any of us. I will always be a failure at activism. And I secretly think that activism may be part of the problem.

The Pastoral Model: Telling Us What To Do

This month I’ve been told by non-disabled people that my reactions to the world are clinically abnormal, and that they can help. I’ve seen white people advising black people on how to come together under Trump. (Because they’ve never done that before, hello Black Lives Matter and the whole of the civil rights movement, sorry, we self-centred white people didn’t see you over there.) I’ve been told lots of things that I am doing wrong in activism and should do better. I’ve had men tell me what should be done about Trump’s effect on sexism in society (often not very helpfully). And I’ve had non-disabled people telling me it’s OK if I can’t ‘do activism’ — I get a pass because I’m disabled, poor thing, go and sit in the corner and knit anti-racist slogans on scarves for the rest of us.

And I’ve been told stories that have been presented as the Truth. That poor people are stupid. That third-party voters are evil. (Even if they were more desperate than you — say, those who once came from countries oppressed and destroyed by the American Empire — and saw no second option there.)** That we all saw this coming… even though the most well-informed of us really, really didn’t. Some of this Truth, I fear, is liberal hand-wringing by people who won’t admit that we, too, benefit from the power structures that have led to Trump’s ascendency.

But a lot of this is the pastoral model. Privilege imposing its expertise on those without privilege, so that it can hang on to power. A concept identified by Foucault. When you tell people of colour, disabled people, disempowered LGBT people and other marginalised people what to do, you may be engaging in pastoral model discourse. And as for the world you are trying to create, that looks equal (to you): you may just be selling a new phase of white, sexist, abelist and colonialist hegemony. Where you still think you get to patronise us. Where you still think you get to lead.

Leaving Us Off The List

This month I’ve had people make long lists of groups who need solidarity in the post-Trump era, and leave people like me off the list. Reminding me that my existence is such an affront to so many sides of the hegemony, that I don’t even deserve to be thought of as under threat. Which gives people ongoing permission to ignore those threats to my existence. Disability hate crime? Surely that doesn’t exist. Daily disablist microaggressions, that could easily escalate if I don’t react in the acceptable way? You’re giving in to anxiety, and we’re really only trying to help. Scared by the gleeful apocalyptic language that everyone’s indulging in, portraying a future in which I will die really fast? Well, the majority wants to indulge in them, so they will. I’m only worthy of an occasional after-thought. Of charity, not solidarity. It’s not only Trump’s lot who are a threat to my existence. It’s everyone who engages in and benefits from the pastoral model.

The disability rights movement has a slogan: Nothing About Us Without Us. We still say it, because people still need to hear it. We are among the most well-known children of the pastoral age, but there are parallel discourses everywhere. The ‘white man’s burden’, where white colonials represented their power as a helping, educating hand to primitive and helpless people. (Thereby erasing their role in disempowering those people.) The charity model, and its disempowering and silencing of so many groups in society, whose voices are now smothered under ‘good works’ that keep them in their place. (But don’t rich people get to feel good about putting a penny in a bucket, and not have to look into the results.) And now: liberal hand-wringing, and forming over-simplistic narratives of a very complex time. (Setting up the story of the good guys and the bad guys, and making sure you talk loudly enough so that everyone knows what side you’re on.)

These models, these ways of being and behaving towards others, they shape the elite colonialist life that we lead — that you lead, if you have privilege along the right axes. We must protect. We must send aid. We must help. We must change. We must lead. We must do something.

My Existence Is An Affront

You people who mock armchair activism: your concept of activism is ableist. You people who say I must do more instead of being more: your concept of activism is ableist (even if you ‘excuse’ me as an excluding afterthought). You people who don’t recognise that I change the world one person at a time: your concept of activism is ableist.

My very existence is an affront to entire contingents of the hegemony, both on the ‘bad’ side and on the ‘good’. And so I will exist, and live, and be what they hate, and change the world. One person at a time.

And I won’t go on your disablist marches to do it.

Destroy the structures of activism. Rebuild them without (dis)ableism, without racism, without colonialist thinking, without sexism and heterosexism, without white supremacy. Without normalcy built in. Otherwise, I will have no part in your activism.

Can it be done? I have absolutely no idea.

Right now, I am not looking for answers. I am sitting with the questions. (I may need an oven.) I think that leaping to action is dangerous, and I think that representing stories as Truth is dangerous. But re-evaluating everything we think we know… well, that’s my only way ‘forward’ right now.

Love from the Failed Activist, busy just existing, and changing things one person at a time. Even if, at the moment, that person is me.

*A note: this is a bit of an angry post, aimed at structures not individuals, and may sound a bit harsh in places. Confronting structures can involve harshness. The hegemony wants disabled people to be quiet angels. And so I embrace the ‘bitter stroppy disabled person’ thing. Yay.

**Another note: I feel this way about the Labour party, who I will never vote for again, so I sympathise with the third-party voters in the US. At some point, I’ll write about my own reasons for being a committed third-party protest voter.