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.

What Am I Worth?

I had a fascinating conversation with a friend recently, in which I mentioned in passing that a group was asking me for help and advice in shaping disability-related policy, but that I didn’t have time or energy to give it to them. (Not to mention that the attitudes of the group in question have not filled me with high expectations for how they will use that help and advice.)

My friend pointed out the major oversight here, the huge thing I was missing. In this particular situation, I’m not just being asked to share a bit of advice or help. I’m being asked to share my expertise, which has been shaped by years and years of training and experience. By an organisation that makes a profit (albeit a small one). And I’m being expected to share it for free. Why, he asked, was I not quoting them a price for my work?

A society that allows disabled people no opportunities

In my purest, most altrusitic, most utopian state of mind, uncorrupted by real life, I am a socialist. I think the economy should work along lines that are close to Marx’s principle of ‘from each according to their means, to each according to their needs’.

But there are two problems with attempting to hang onto socialism in a real, disablist economy. The first is that Marx had little time for disabled people and his principles probably would never actually work for us.[1] The second, of course, is that we do not live in a socialist economy.

In fact, we live in a society that is oppressing disabled people, and driving them into horrific poverty, to a degree that we have not seen since probably the Victorian era. I’ve talked to a lot of my disabled friends recently who are facing the prospect of a future full of dire poverty and literally being stuck in bed long-term, thanks to our current government’s policies around taking away benefits, care and support provision, all of which used to allow disabled people to work (and now they can’t). I know that we disabled people need to seize economic opportunities when we can, in order to survive. The government is not giving us anything according to our needs anymore. It’s possible that they never will again.

“Your expertise is not worth anything”

I also know a lot of disabled people who consistently face the expectation, from non-disabled people, that they should give away their expertise for free. This is because of the incredibly low value that non-disabled people place a) on disability rights and equality, and b) on disabled people ourselves. Why, they think, should we pay for disability equality training, when we could happily (and cheaply) continue as we are? At the very least, you should give us this training/information for free, they say.

Here’s an example. Ann Memmott delivers incredible autism equality training. She mainly works in church contexts, but also in other settings. I’ve been lucky enough to hear her at conferences. Her expertise is worth a lot of money. But she has talked about being told that her expertise is not even worth the cost of her travel. She has literally been told, “Your expertise is not worth anything, and should be free.” Our society places an extremely low value on autistic people, and on autism equality/rights. It places even less value on changing its practices to be more inclusive of autistic people.

I may not personally be horribly short of money (thanks to the incredible privilege of having a partner who can work and who supports me.) But if I contribute to non-disabled people’s expectations that I will do work for free, what precedent am I setting?

I also realise, as I’m writing this, that I seem to believe I’m only worth “not being horribly short of money”. This is hardly having a high expectation of my own skills and their value. My training is actually worth a lot of money. I charge up to £500 a day for disability equality training, with organisations that can afford this. That’s what my expertise, skills and experience are worth. (I have a Master’s degree in Disability Studies which took a year and cost me a few thousand pounds; I did a year’s training to be a Disability Equality Trainer; I have a PGCE in adult education and training which took another a year; I have been working on my PhD in disability and religion for many years, which also costs me money every year; and I am bloody good at what I do.) So why do I not charge this much consistently for my expertise? When I am working with smaller groups and charities, why do I not look at what they can afford, and only discount my fees based on their ability to pay? Why do I offer my skills for free so much? How far am I creating my own poverty here, and how poorly am I valuing myself?

The principle of ‘My expertise is worth a good price’, despite how poorly society may value me

There are places where I will always offer my expertise pro bono. The fantastic Druid Camp, which has literally no money, offers me a free working ticket in return for my year-round and on-site expertise, and they are really using that expertise to try and improve access. (I had to be persuaded to accept the free ticket, which continues to say a lot about how poorly I value my skills.) Some churches have very little money, but are very keen to hear from me and will pay for my travel and give me networking opportunities, and I know they will take the expertise and do something with it. When I’m sharing research findings from my PhD, I will rarely charge, because ‘sharing findings with the community’ is part of my role as a disability researcher with responsibilities to my participants. Sometimes my friends request advice or help, and I’m delighted to offer it, because they’re good people and they really want to learn, and will use what they learn from me. (My partner Shai works on the same principle – they share disability benefits application advice for free to those in most need, despite being a trained lawyer and professional advisor/advocate. This is because Shai is a ridiculously good person and knows there are people in real need out there.)

But the principle of valuing my skills, and sharing those for what they are worth, is really, really important. It’s not just a principle that affects me. It affects all disabled people fighting for opportunities in this disablist society that does not value what they have to offer, but should value it. It is a principle which is not particularly socialist, but which is good disability activism.

If you can afford to pay for my expertise, I’m not sharing it with you until you demonstrate that you really value that expertise. Until you pay for it. While we live in a capitalist economy, this is key to my survival, and to the survival of other disabled people. And more than that: it’s a spiritual principle that I need to maintain, as a Pagan who says my worth comes from my humanity and my connection to all life. And it’s a humanist principle that I need to maintain, as a humanist who says that we all have true worth as human beings, whether we are disabled or not.

*                                                               *                                                                 *

[1]I’ve said before that I’d be second against the wall in the revolution. The first wave would be those that the revolutionaries hate for principled reasons – the rich oppressors. The second wave would be those who prevent socialism from working properly, because we will always have far, far more needs than means. I think that most disability activists don’t consider how poorly socialism would work for us in the real world. I’ve worked with enough egalitarian socialist radical groups who remind me how much disability access costs them, to know that most groups are not benevolent enough to include us. Individuals, maybe. Not groups.

Sorry to end on a note of cynical realism. You may now return to your regularly scheduled experience of finding me a weird source of thought-restructuring inspiration. 😛

Celebrating Good Access, Never Forgetting Disablism

We had a wonderful day yesterday.

My dear partner Shai likes me to take me out on adventures. Most of the time, I’d really rather stay at home and watch Agent Carter have adventures without me. Having my own adventures tends to lead to access difficulties, constant microaggressions, stress, meltdowns, exhaustion and days needed to recover. But going on adventures makes Shai so happy. They are determined that we will access the world even if it would rather we didn’t.

So when we woke up yesterday and it looked like it was going to be a nice day, we were off. Me on my scooter, Shai with their sleeves rolled up ready to fight anyone who got in our way, off for a London adventure. All day we tweeted clues about where we were.

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Setting off from home

We started by getting the (surprisingly accessible) rail replacement bus to Stratford, from where we went over to the Olympic Park.


Access information area at the Olympic Park

The Olympic Park, former site of the London Olympics, is fab. Because it had to be designed with the accessibility of Paralympians in mind, it’s fully accessible, from its paths to its wetlands to its river walks. We met some fantastic volunteers who gave us great advice on accessing the park. (Well, actually, they saw me and got very excited. A disabled person we can advise! Finally!) The park has a buggy service for those who can only walk limited distances (it will pick you up at set points so that you can get back easily from your short walk), electric mobility scooters that can be borrowed, and volunteers ready to give out lots of information including directions and advice on the most accessible ways to do things.

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Wetlands area at the Olympic Park

After that good experience, we caught the DLR train (because the River Lea towpath was out of action, as we discovered on the way) and headed to the Emirates Air Line – a cable car across the Thames with views over London.

The DLR is fully accessible, which is good because the rest of London transport has a lot of catching up to do to get to this level of accessibility. But it’s not bad at all, unless you don’t know which doors to go in to find the wheelchair space. Two DLR train changes later…

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I may have been a bit over-excited about getting the cable car above the Thames

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View over the Thames from the cable car!

It was a great day. We had very few access problems, other than a few mean people (mostly well-to-do-looking older people, interestingly) who wouldn’t move suitcases out of wheelchair spaces on the train, and held up lifts, and stared at me, and were generally not so nice. On the whole though, people were wonderful. We met allies with baby buggies, and friendly restaurant servers, and very helpful tube staff, and wonderful park volunteers, and a lot of just plain lovely people. And there was nothing I wanted to access that I couldn’t. I’ve tweeted the Olympic Park and Transport for London, thanking them for the good access.

But I wonder about the amount of celebrating I’m encouraged (and encouraging myself) to do over good access. Do non-disabled people celebrate being allowed to get on buses and tubes? Do they rejoice over tables in restaurants that they can reach without an obstacle course, or that they can simply get to at all? Are they ecstatic about being able to use the toilet? Do they breathe a sign of relief when they aren’t shouted at by transport staff or venue managers? Are they grateful daily for housing that doesn’t harm their body and where they can access everything they need including the kitchen and the bathroom?

Finding the balance is a tough one. The people who go out of their way to help break down barriers in this inaccessible world are worth thanking – there are so few of them. And I need to be encouraging people to respond positively, rather than aggressively, when I ask for access. But I would still far rather live in a world without the barriers. And I strongly believe that expecting access should be the norm, rather than something I should be expected to be grateful for (as the UK government would have me believe).

Mark Neary seems to be having this conflict over his blog posts too. People are asking him to be more ‘balanced’ when he criticises services where oppression of marginalised people happens. He’s basically getting a ‘not all psychiatrists’ argument – which is a silencing and derailing technique, a bad faith argument. Similarly, I’m often told I complain too much, or that I’m too aggressive about disablism/poor access, or that ‘not all non-disabled people’ hate disabled people. If I’m not told it in words, it’s in eye rolls, uncomfortable silences and quiet encouragement to be nicer and less complain-y. (“But you must also have had GOOD experiences with…” *…cue silence from me*) It’s true that ‘not all’ services, facilities and social structures are oppressive and/or inaccessible. It’s true that not all non-disabled people get their thrills from controlling disabled people, as in the example from Mark Neary’s blog. But all disabled people encounter disablism, microaggressions, marginalisation and oppression. Often, daily.

And as with the basic problems evident when people say ‘not all men’, neither is it acceptable to say ‘not all non-disabled people’. Non-disabled people should not expect to be thrown a party full of gratitude and presents just for providing acceptable levels of access. And criticism by disabled people should never be silenced.

I will always criticise disablism more than talking about good access. The latter should be the least I can expect. The former should be widely and loudly decried, so that the word gets out that it is never, ever acceptable. If you get bored of my complaining, you’re free to stop spending time with me. (Many have chosen this option! 🙂 ) It’s worth losing friends over. Disablism must be rooted out and challenged wherever it is found. The same goes for other forms of insidious social oppression – racism, sexism, transphobia, homophobia, oppression of religious groups particularly Muslims… the list could go on and on. I’ll always aim to shout about it before I celebrate its absence.

But still. Thank you to the lovely disability access volunteers at the Olympic Park. You’re fab, and you made our day.

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Naming and Shaming: The Science Fiction Book Group

*ETA: I had a sudden moment of more-madness-than-usual and edited in the direct link to the group, below. Enjoy.*

I’ve decided to start a ‘name and shame’ series here, aimed at organisations and institutions that discriminate against disabled people, exclude us, and don’t follow equality legislation.

Obviously there are some groups and orgs that I can’t name because I’m, let’s say, connected with them in ways that mean I should be careful of what I say. With others, I’m too afraid of repercussions to share the full details of the group (as in this post’s example). So ironically, today I can only shame, not name. But on the whole, I’m able to, and I want to. I go through life giving my time and money to a lot of institutions that then feel they can treat me less favourably than others, or directly discriminate against me, because I’m disabled. This is a daily occurrence for many disabled people, and I don’t think we should sit back and stew silently over it. And many people don’t – the other side of our highly connected age is the ability to share the names and details of the companies that treat us like crap. Allies and fellow disabled people can then choose what they want to do about this. I personally don’t want to frequent establishments and services that have treated me, or my friends and colleagues, poorly.

Plan and Cancel: Nay and SJ’s Strategy for Life

Meet the heroes of this adventure, SJ and Nay  — the indefatigable Team Jacobs.


(Well, not really indefatigable, as Nay is regularly very fatigued, but definitely undefeated.) Nay and SJ (a mutant and a… weirdo) travel the universe battling the forces of disablism. Each has their own strengths that compliment those of the other, like any good hero team. Their strategy: to ‘plan and cancel’ – to make sure that Nay doesn’t miss out on life due to the effects of being a mutant in non-mutant society, by making plans and then cancelling if Nay is ill – I mean, having a mutant attack. This way, Nay gets to enjoy a full life as much of the time as possible, not being too afraid to make any plans and never going out as a result. Nay has spent many years teaching herself that cancelling does not make her a bad person (even though our story’s minor antagonists, the Inner Demons from Planet Neurodivergent, spend a lot of time trying to tell her otherwise). Mostly, she’s winning.

However, there is an evil enemy in this story – the enemy of the wonderful ‘plan and cancel’ strategy of the super Team Jacobs. An enemy that would like Nay to give in to the Inner Demons from Planet Neurodivergent, and worse. This enemy is called Disablist Society.

OK, I can’t keep up this metaphor or I’ll get very confused, but you get the idea. 🙂 and the Sci-Fi Book Club That Did Not Understand What ‘Discrimination’ Meant

In these highly connected times, some people start small groups and forget that these, too, have to follow disability equality legislation – no matter how small or unfunded they are. There is a strange idea out there that you have to be some sort of big company to be required to make reasonable adjustments for disabled people. That isn’t true.

Things with the science fiction book club started off quite well. The group leader saw that I was using a wheelchair in my photo, and contacted me to reassure me that the group was on the ground floor of an accessible pub. Some people might have found this a bit odd or creepy, but it was certainly convenient for me. Accessible meet ups of this kind are not too common in London, so I was pleased that I could get into the building. But I mistakenly assumed that the policies and practices of this book group would be equally non-discriminatory.

The problems started when I had to miss two book groups over about a three-month period. I experience severe migraines related to my EDS – and I do mean severe. At this particular time last year, I was experiencing occasional but very nasty episodes of all-day severe pain, dizziness, vomiting, intolerance of almost all light and most sound… Not exactly a great situation in which to attempt to drive across London for a book club. I was as disappointed as anyone could be about having to miss meetings, when I had read and very much enjoyed the books due to be discussed. (In the case of one book, I hadn’t been able to stop talking to SJ about it for weeks, and my disappointment at not being able to go to the discussion was huge.) But my migraines can come on with little warning, and then there’s nothing I can do. On the first occasion, I think I got the first signs of a migraine in the afternoon of the book club evening, so I changed my RSVP to ‘not attending’ the moment I knew I wasn’t going to make it. On another occasion, I believe the migraine came on very suddenly, too late to change my RSVP, but I wrote on the message board for the group explaining that I wasn’t going to make it and that I had disability-related reasons for this. On one further occasion I was a few minutes late because I had just come from a medical appointment at a hospital on the other side of London – literally maybe five minutes late. (That was my first sign that something was wrong – the book group leader was very rude about my lateness, even when I went up to him privately afterwards and explained I’d come from an unavoidable medical appointment. Making me feel like a naughty school child…)

You can probably imagine how I felt when, after the second time, the book group leader sent me one of the nastiest emails I’ve ever received. He made it clear that my ‘behaviour’ was not acceptable, that lateness and cancelling could not be allowed in his book group, that I was preventing other people from coming to the book group, and that I was on my ‘first strike’ and would be removed from the book club after three. When I, nonplussed, replied explaining what disability can mean to someone with chronic illnesses and an autistic spectrum condition, his response was to treat this like an excuse and to talk to me like a naughty child. I made it very clear that disability discrimination is not just about ramps and buildings, and then I left the group.

It’s now several months later. This morning I received an email from the book club host. He has, apparently, recently sent out an email shaming a large number of people for needing to cancel their ‘yes’ RSVPs to book group meetings. In this email, he outlines some of the ‘excuses’ he received. Among these were several cases that were clearly to do with disability and chronic illness. He wanted me to receive this email too, apparently to prove to me that there was ‘nothing personal’ in his response to me. I emphasise: I have left this group and he still felt the need to remind me of how poor my behaviour was, and to tell me about others’ medical situations that have led them to lead to ‘plan and cancel’. One poor person who is shamed in these emails apparently had gastroenteritis during a couple of book group meetings. What a horrendous situation for that person to be in: not only experiencing an extremely painful and activity-limiting illness, but then to be treated like a terrible person for having to miss out on life as a result.

I am under no illusions here: this is a manifestation of our society’s normalcy structure, and what it values (and does not) today. It values those who know when they can be active, and who can be active most of the time. It values those who have ‘standard’, ‘normal’ abilities to get to meetings, and who don’t get ill and have to cancel at the last minute. Normalcy: it’s insidious.

Picture a non-disabled Glorious Leader of a very organised crew. He probably thinks of himself as a hard worker and values efficiency, good time-keeping and all those other things that non-disabled people can take for granted, because society is built for them and their needs, and doesn’t put up barriers against them. He’s probably never had to plan and cancel in his life, and he certainly doesn’t have to on a regular basis. So he never considers putting in place alternative arrangements for those members who do, so that their issues don’t have to affect whether others can come to group meetings or not. (This could be an easy fix with some creative thinking, by the way.) He simply shames those whose lives are not as simple as his (because society isn’t built to fit their bodies or minds), even going so far as to share their medical details with the rest of the group, expecting that this will stop their ‘behaviour’. But all it does is drive away the people who only wanted to join a simple book group for a little bit of evening fun*. People who can’t shape their bodies around normalcy. People who can’t meet the rules and regulations of our Glorious Leader. Who, funnily enough, doesn’t think that other rules (like the Equality Act) have to apply to him.

I’m particularly interested to ponder the relevance of this being a science fiction book group. This saddens me, but it shouldn’t really. SFF culture has long-standing issues with disability. Every time I try to play in their pool, I find that they want me out (and send me off the one with the mouldy access ramp and the cold dirty water). Read some of David Gillon’s recent work on SFF and disability for more.

Our intrepid heroes are currently looking for a new book group that will fit Nay’s mutant body and mind, where the evil non-mutant overlords don’t get to make all the rules based on their needs while ignoring everyone else’s. It’s a struggle to find one that works. But they fight on! (I’m currently considering going to one that sounds lovely but is down some stairs. Swings and roundabouts.)

Be careful of science fiction book groups in the London area. I will share the name of this book group privately, on request, if anyone reading is looking for a group to join and wants to avoid this one.

Next in this series: the restaurant that turned away my father and his hearing dog in a truly appalling way, and have gone on to behave very badly towards him.

*And it’s not like those of us with chronic illness get to have much of this, for gods’ sakes…

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?


STOP QUOTING THE POLICY AT ME! (Or: Your Piece of Paper Doesn’t Exclude Me Any Less)

I am so tired of having ‘the policy’ quoted at me.

This year I wanted to attend Autscape. I am tired, so tired, of daily trying to fight my way into the neurotypical world. I was excited about an event that puts autistic people at the centre, makes itself accessible to all autistic and neurodivergent people.

Then I found out it wasn’t fully accessible to wheelchair users.

OK, I thought. Maybe I can make it work for me. Maybe I can be creative, work around issues, with the help of the organising committee who will no doubt support me with information and help.

Then I found out that it’s their policy to focus on wheelchair accessibility only ever other year, to keep costs down the other year. And the familiar disappointment kicked in. And I just… gave up.

I found it a little ironic that the theme of this year’s Autscape was ‘creating autistic space’. Autistic space that excludes certain autistic people. And that when I talked with a delegate over twitter about a session running there on the subject of exclusion in the autistic community, I was told that wheelchair accessibility had already been discussed (with the hint that it would not be discussed again). While the person no doubt meant the comment helpfully, it was a reminder that even in discussions about who is ‘in’ and who is ‘out’, a whole excluded group has already been ‘dealt with’ and the conversation there has ended.

All because of a policy.

To quote an email I sent to a friend today:

I told my wheelchair-using neurodivergent friend about this and she wondered how the autistic community would feel about a neurodiversity conference that wasn’t accessible to autistic people every other year. Despite the fact that everyone is quoting the bloody policy at me every time I bring this up, telling me that it will be accessible next year is not good enough… I sobbed my way through reading the Autscape twitter feed this year. And deleted a tweet complaining about access because I worried I’d get shouted at. Really sucks.

Pagan Parallels

I’ve talked a lot, mostly on my other blog, about inaccessibility in the Pagan community. It continues without much sign of improvement, especially in London. The excuse gets rolled out a lot when I complain – whatever the excuse is, whether needing privacy for discussion, or the inaccessibility of pubs in London, or (funniest of all) that no wheelchair users ever come to the events. (Really?! No wheelchair users come to events held in an upstairs room? You do surprise me!)

For the past couple of years I’ve also been struggling with OBOD‘s approaches to accessibility and policies about certain disability issues. (More on that can be found on my spiritual blog when I feel up to discussing it, and maybe at Gods and Radicals soon.) Once again, it’s not so much the existence of the policy that’s the problem (although it is a problem). Worse is the way that people respond every. single. time. I mention it. “This is the reason for the policy! Learn about the policy! It is a good policy!”

Brick walls, and communal dismissive attitudes, and regrouping protectively around the boundaries of your organisation. These are the very definition of exclusion.

Please Stop Quoting the Policy At Me: Some Effects of Brick-Wall Exclusionary Policy-Citing

It’s one thing for something to be inaccessible or exclusionary. It’s quite another for you to have enshrined that inaccessibility in a policy – and then to constantly quote that policy at me as justification for your inaccessibility. I know there’s usually a reason for inaccessibility. I know it’s sometimes a really good reason. Can we please assume that, as an informed disability rights campaigner, I already know the reason, disagree with it, and would like to move on to talking about ways forward, alternatives that might include me and people like me? Instead, though, I meet the brick wall of a hundred people quoting the policy whenever I mention access difficulties. Or saying things at me like “This has been discussed before,” as though that solves the problem. Somehow, never an apology. Never a “Here’s what we’re in the process of doing to try and fix this, longer-term.” Never even an acknowledgement that this is a problem, a policy of exclusion, an example of disability oppression. Always the justification. Always the assertion that we are right, and that I am the one with the problem.

As a result, I feel excluded from your community. (Which becomes your community, not mine anymore.) I increasingly withdraw from your events, including those that are fully accessible. I become avoidant about talking to people from your group about access at future events. I become scared of your group. Mentions of it start to be upsetting to me. Your group stops representing safe space, and starts representing exclusion and oppression.

I Keep Offering Help…

I don’t have a lot of  free time. The time I do have is spent dividing up my tasks (PhD, other work, volunteering in many ways, personal life) against my spoons, trying to eke them out into something that approximates a rewarding life. Yet I will always respond to inaccessibility with an offer to help fix it – usually for free. Consider taking me up on this. I charge private organisations around £250 per half day for this help. If I’ve offered you help to fix something, you’re being offered something valuable from a trained and experienced Disability Equality Trainer and widely-published writer on the subject. If you turn me down, and then get taken to court by someone with more determination than me, and find yourselves unable to say you’ve done anything, you might start wishing you’d accepted the help. (I’m talking mainly to the dozens of Pagan orgs and groups I’ve offered help to, here.)

There’s a related question, too: how far do I have a responsibility to fight these things? Can I belong to OBOD when I know that one of their policies, and other of their accessibility practices, are problematic for entire swathes of the disabled community? Can I go to Autscape knowing that their policy is to exclude wheelchair users every other year? In both cases, the policies do exist for really good reasons, in one case (Autscape) with the aim of not excluding others (people living in poverty). Intersectionality is complex, and the real world is a complicated place. So what is my responsibility to campaign and fight here? Do I have a personal obligation to fight and campaign? And how does that affect my right, and need, to live as ordinary a life as possible? (I need spiritual practices/groups that make me happy and I need safe autistic spaces. Am I allowed them, as a campaigner with integrity?)

Accessibility Has More To Do With Imagination Than Money

Yes, accessibility can (sometimes) be expensive.

Yes, inclusive policies can open you up to other kinds of legal issues.

You can still make change, with enough imagination. Druid Camp is working with me on making their camp more accessible for more disabled people. If they can manage that in an empty field, you can change a few things with a little creative thought.

And by accepting help from those who offer it.

And by not shouting people down, but instead being willing to listen and change.

Final Thought: A World of Disappointment

For me, my experience as I engage with an inaccessible society is one of consistent disappointment. I meet disappointment about 80% of the time that I want to do something other people can do. And I am disappointed in people I want to think better of.

I would like to live in a world in which I experienced a little less disappointment.

And this is why we fight.


I’ve recently been writing about exclusion from universities and churches, in relation to my research, for a creative research journal that’s coming out soon. I’ll link to it here when it’s out.

I’ve set up a Facebook group for marginalised Pagans from minority, oppressed and excluded groups. Do join if you fall into that category. I’d like to get allies together to work on some of these issues.

Cross-posted to my Pagan blog.

Blogging Against Disablism Day 2015: Disability and Christian Churches

This post is part of Blogging Against Disablism Day 2015.


Churches do not, on the whole, have a great record with disability.

Stories abound of exclusion, discrimination, and even injury and deaths of disabled people at the hands of churches.[1] And these stories are often not being told by disabled people themselves. While there are plenty of charitable groups working on issues of disability in the churches, until recently there had been few groups led by disabled people.

Which is shocking, when you think about the long, tangled history of disability and the Christian churches. Disabled people were used by the early churches to legimitise their beliefs – if we can control ‘demons’ better than you, then our beliefs are clearly better, they said, using people with epilepsy as their examples[2]. Miracles were the bread-and-butter of the churches in the medieval era, when the churches were suspicious of medical treatment that did not go through them, and when the power of saints and relics was used to support the churches’ authority. Later, the Poor Laws gave the local churches a great deal of power over ‘deserving poor’ disabled people – not least in helping to decide who fit that category. Victorian charitable institutions for disabled and other disadvantaged people helped soldify what we now know as the charity model – which has been very disempowering for disabled people.

There are signs that the tide is turning in the churches, though. User-led groups of disabled Christians are springing up, making use of the social media tools that can amplify the voices of those who were once kept silent. Disability and Jesus have been leading #fullaccesschurch days recently, asking people to tweet about their experiences as disabled church members. Disability-accessible action like this is starting to make a difference, starting to draw the attention of the churches.

The Church of England, in particular, continues to wield a lot of influence in society. Which is why I sat up and listened when ‘Disability and Jesus’ asked the very thought-provoking question, above, on the #fullaccesschurch feed today. “If things get worse for disabled people after the election is the church ready to stand in the gap?” Although the churches have made a few noises about cuts since the coalition came to power, I can’t be the only disabled person who has felt that, from its privileged position in this country, there’s so much more it could have done. At the same time, I can’t be the only person who is nervous about the power over disabled people’s lives that is being passed to the churches in our society, with food banks and other resources now being managed by many faith groups. This has implications for disabled people that need a lot more discussion and consideration.

But first, a #fullaccesschurch is needed. A church that doesn’t close doors and put up walls against disabled people is a church that may have a right to participate in a debate around meeting disabled people’s needs. If we’re going to trust them to plug any gaps that any unscrupulous government creates, and if we’re going to trust them to stand up for us to said government in the House of Lords (C of E bishops) and in the social marketplace, then they need to put their own houses of God in order first.


If you’re a former Christian who left the churches for reasons related to disability, or you’re a current church member who is disabled, I’d love to hear from you. I’m doing research into the experiences of disabled people in the Christian churches. I want to see what the general picture is for disabled Christians today. How well included are they? Are my experiences of exclusion unusual, or the norm? I’m writing about my research on my academic blog. So far, I’m getting an interesting mix of results. Follow me there, or at twitter, to hear more about it.

See also my post for the last #fullaccesschurch twitter access there.


[1] Some references: great books to read on this subject include Nancy Eiesland’s ‘The Disabled God’, Kathy Black’s ‘A Healing Homiletic’ and Sharon Betcher’s ‘Spirit and the Politics of Disablement’. There are lots of examples there of disabled people facing exclusion from churches. And lots of examples of good practice and real inclusion, too.

[2] Nicole Kelley writes about this in the excellent book Disability Studies and Biblical Literature. She looks at the way that epilepsy was used by the early churches to establish their power.

A bit about Asperger’s and how it affects me

It’s very hard to have Asperger’s when you’re a highly-intelligent person who is able to mask it (though only through incredible, exhausting, constant effort). Especially when the mask falls, when you’re unable to keep it up anymore, and people get a glimpse of your reality and don’t know what to do about it.

I write about Asperger’s a lot. But there are still some things I don’t explain about it, and I think I should. Here is some more stuff about how Asperger’s affects me. (Note: this is not a comprehensive list. I could have written three times as much. But it would have got boring.)

And people who have known me a long time, since before I had this diagnosis, may be confused about how I’m now categorising things that I used to see differently. Just know that I have found it so helpful to have a diagnosis and to learn that these things about myself do not mean that I’m broken, or wrong, or ill. They mean that I’m different and that the world doesn’t cope well with my difference. Getting a diagnosis has been the most helpful thing for my self-image that has ever happened to me.

Please note: Do not tell me you understand, unless you have Asperger’s or autism too. The likelihood is that you may think you do, but you really don’t. Instead, please listen and learn. In return, I will listen and learn about your life, about the things that are relevant to you. I have a hard time when people say “I do that too, and it’s normal.” Usually that means they have not understood the extent of how difficult I find these things. Instead of ‘I understand’, consider saying ‘I hear you’ or ‘I’m listening’. Thanks.

– I get very tired from ‘pretending to be normal’. 

Trying to act like a neurotypical person is exceptionally hard work. I have to think about every single word I say, every gesture, every action, every aspect of social interaction, and more. I have to calculate things like when to speak in a conversation (every time, which in even a five-minute chat can be exhausting). I have to manage my emotions to a very careful degree – they make me do things that people respond negatively to, but I don’t know what those things are or how to avoid doing them, so I spend a lot of time sitting quietly and trying to work out if I’m showing any sign of emotion or response and whether it will upset people. I often go too far the other way and talk and talk and talk, sometimes inappropriately for the situation I’m in.

I don’t understand sarcasm, although I have learnt about it by rote and through a lot of negative encounters with it, so now I can sometimes recognise it – but it’s always painful. I don’t understand most metaphors or analogies, and I have to pretend that I do, even when I’m deeply confused by something that someone has said (which could be something as simple as ‘I’m so tired that I’m about to drop’ – does the person mean it literally? – figuring this stuff out can take up all my mental and emotional resources in a conversation). My tone may be inappropriate, because I don’t understand about tone and what’s wrong with the words I’ve said, or what they may communicate in the mysterious word of the non-verbal. (If you think I’m being aggressive, please ask me what I mean. I probably don’t intend to be!)

– I can’t easily follow (or understand) social rules and conventions.

One of the worst things here is when someone asks ‘How are you?’ First of all, I’ll tell them, whether they really want to know or not. Secondly, I always, always forget to ask about them. Social niceties are not easy for me. It’s not that I’m not interested. I’ll ask all sorts of things about the other person when it’s relevant to what we’re really talking about. I just can’t remember the rules. I won’t ask about your day or inquire about your children’s health. Remember: it doesn’t mean I don’t care. Tell me something real about you, and I’ll be fascinated and want to know more. I just really have trouble with small talk. Get to the point!

Earlier this week I had a great chat with an autistic person who is doing research that overlaps a bit with mine. We didn’t start with social niceties. We dove right into the details of our work, our lives, our research. Half way through the conversation I realised I hadn’t asked the other person anything about her life, so I asked a thing. But a thing that was relevant. I still don’t know anything small-talk-ish about her – where she lives, whether she has a family, what else she does other than her research. I know the important things, the things we were there to talk about. The rest I’ll pick up at some point, if I ever need to know. (Does it really matter anyway? If it’s important enough to her, she’ll tell me. If not, we’ll keep focusing on the big stuff.)

Relatedly, you may find I don’t make sense during a conversation. This is usually because I start talking about something that I think is relevant, but other people don’t understand my thought processes. Similarly, I very regularly misunderstand the meaning of others’ speech. Again, I spend a lot of my time trying to pretend I’ve understood. Like a deaf person pretending they’ve heard so that they don’t ruin the conversation, I may just nod and smile a lot, but not have a clue what you mean. I’m trying to learn to say “Could you please rephrase that?” – but it’s hard, especially when people get frustrated with me for not understanding.

– I have cognitive difficulties.

It can be very hard for me to get people to believe this one. I don’t *seem* cognitively impaired. But I am. I have some serious memory problems (please don’t be offended if I forget your name or something you’ve told me about yourself). I also find it very hard to recognise faces, which means that if I meet you for the second time, I may forget that we’ve met before. Please excuse my constant “Have we met before?” type questions. (I’ll soon remember, when we start talking.) I also have some theory of mind difficulties, which means I spend most of my time trying to work out other people’s intentions and getting it wrong. (It is exhausting.)

– I have overloads and meltdowns.

This is one of the most difficult things about Asperger’s. Out of nowhere I can get sensory overload or emotional overload that can lead to a meltdown. At which point I start looking and sounding like a child having a tantrum. I find this so embarassing, as a professional and an adult and so on, that I usually do my best to disappear and have these on my own. I never, ever want anyone to see, because it will affect my self-image and your view of me. But at the same time, I often secretly wish someone would help… 😦

– Wishing I wasn’t like this affects my mental health.

I experience obsessive thoughts, especially over ‘getting things wrong’ socially or otherwise. (Spending 24 or 48 hours being able to think about only one thing, literally, is not fun. It happens a lot.) I have high anxiety, which often comes out in more obsession – I may only be able to talk about one thing for a few days, and that can seriously piss others off. (SJ knows this one well.) It can look like I’m only thinking about myself, when in fact, I just want to put my mind at rest about a thing that’s worrying me (which can be anything from that cable on the floor that someone may trip over, to a thing I need to fix, to the health of another person and whether they might die…) I get a lot of depression, including over not being good enough.

–                                                     –                                                  –

I share these things on my blog, not because I want attention (in fact I spend my life trying to avoid drawing attention to myself and trying to avoid people noticing I’m different), but to avoid misunderstandings. It’s the worst thing in the world when I get it wrong – when I get anything wrong – and offend, upset, frighten, confuse, irritate or frustrate someone. I don’t want to do any of things.

But at the same time, I wouldn’t want to be ‘normal’ either. I am different, and that’s good. The problem isn’t with me. It’s with the society that expects me to behave in a certain way, to fit in, and demands things from me that I can’t give – not without exhausting myself and spending my life pretending to normal. As you can imagine, the result is often intense anxiety, depression, and worse. But it shouldn’t be. I shouldn’t have learnt to hate myself for being different. I should be able to love and appreciate the beautiful variety that I contribute to in the world.

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