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.


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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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.

‘The language of shirkers and scroungers?’ Talking about illness, disability and coalition welfare reform – Disability & Society

Picture: protesters at today’s ‘Hardest Hit’ march, carrying a sign which is partly written in Braille. It reads “We’re being —- by the government.” Someone has written a translation of the Braille word below it: “shafted”. Photo copyright Lisa Egan.
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