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

View story at Medium.com

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.

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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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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?

 

Blogging Against Disablism Day 2015: Disability and Christian Churches

This post is part of Blogging Against Disablism Day 2015.

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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.

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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.

References

[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.