Celebrating My Disabled Pagan Life: Photoblog

Every time a Pagan or polytheist tries to tell others that they should only take natural remedies or dictates what health should look like, I get twitchy.

I’m currently deep into drafting my thesis about disability and a particular religion (which will eventually be 100,000 words long, so it’s keeping me fairly busy). I’m exploring big themes. And the more I read and write about certain religions (you know, the ones that Pagans are often so quick to judge), the more nervous I get about how Pagans can be very similar in our attitudes towards bodies and minds. We, too, dismiss disabled and chronically ill people for being different. We may do it much more subtly. But we do it.

For example, I’m looking in my research at how some religious and spiritual communities keep out people who are different, telling them they just need to pray more and have more faith, and then they’ll get better. That has varying effects on people, usually negative ones. For Pagans, the equivalent could be: you just need to take more natural, herbal remedies and ‘think positive’ and you’ll be all better soon, and then you can come and join us. Or it could be: sickness is full of miasma and bad energy, and you need to be cleansed before you can be a member of our group/do magic/be good enough.

Well, bollocks to all that.

I want to allow my body to be me. It’s different, and it’s beautiful. We are all different. This is not a bad thing.

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See how beautiful! This is how great I am looking after nine hours working on my thesis. I think the threadbare second-hand hoodie is particularly glamorous. And the birds-nest hair.

[Image: Me in chair. With slightly worrying grin.]

I celebrate my reliance on ‘big pharma’. It has allowed me to do a PhD in which I am blessed to be allowed to share the stories of disempowered people. How does it do that? By providing me with medication that treats my appalling levels of pain. Without medication, I’d be unable to move from bed most of the time. It also treats my heart problems and blood vessel issues, extreme fatigue, anxiety that stops me from having the life I want, my three separate sleep disorders, and a few other things. And what a blessing to live in a country with a National Health Service that offers me all that medication at a price that I can afford (and that’s even giving me free acupuncture at the moment). Blessings of Brighid on the doctors and nurses and physios and pain clinicians and sleep technicians that are a part of my daily life (yes, I do mean daily – I have medical appointments most days at the moment).

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Just three of the many gifts that great human minds learning from the wisdom of nature have given to me. I will have to take these meds for the rest of my life – and I will have a rest of my life. How cool is that?

[Image: packets of pills.]

I celebrate my reliance on modern medical technology. It means I don’t have to risk dying in my sleep. That’s a very real risk that people with sleep apnoea live with. Mine is comparatively mild (although I still stop breathing 50+ times an hour in deep sleep), so the risk of that is low, but it exists. More likely, though, is that my ten years of untreated sleep apnoea has led to degenerations in my brain. That may be the root cause of why I’m so anxious, forgetful and brain-foggy. Herbs won’t help that (not least because I’m allergic to most of the ones that traditionally help with sleep). Right now I am struggling very hard to get to used to this dread machine. (I, ahem, may have screamed at it and then thrown it out of my bedroom door at 2am one night earlier this week.) But I persist. It’s been four difficult months trialling it. And I am still deeply, profoundly grateful for this stupid fucking machine with its enormous sleep mask that means I wake up uncomfortably every half hour. Slowly, crawling along month by month, I’m getting used to it enough that it’s actually having the chance of treating my daily and long-term effects of this. (Sleep apnoea, by the way, is a common side effect of my genetic condition. I don’t have enough collagen in my connective tissue, so everything is very very floppy. So my airway collapses a lot. Fascinating, huh? I love the amazing diversity of the human body.)

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My APAP machine to treat sleep apneoa. It runs on the will of the evil beast of Electric Power. (It’s alive! It’s alive!) [Image: black machine with clear face-mask sitting on top.]

These negative attitudes I see in Pagans towards medical treatment – they all reflect the insidiousness of ‘normalcy’, which is a way that our culture regulates our bodies. “Be normal,” says our culture. So we try to pretend we are. And that is very, very limiting of us. And it’s bad for us. It stops us from loving our human diversity. It stops us from understanding our complex, remarkable bodies and minds. It teaches us to judge each other. The very fact that I’m writing about this will be frowned upon, and mostly ignored, since these aren’t topics to be discussed in polite company. (Yes, physical conditions are stigmatised in our society too, even though I hear some people with mental health problems claiming otherwise.)

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That little display says I got nine and a half hours sleep last night. IT LIES. [Image: Close-up on APAP machine.]

But I, like Whitman, sing myself and celebrate myself. (Please excuse the hubris of comparing myself to great poet.) This is my Druidry. This is my polytheism. This is my daily practice.

The siren song of the normal is seductive. But we know better – we liminal ones who live in the ever-moving spaces between pain and relief, between difference and normalcy, between this world and the Otherworld. And if we force others to look at the shadowy spectre who walks with them daily, that they have forgotten how to see? Then we have done the sacred work of the Lords and Ladies of Life and Death. That sounds a lot more adventurous than doing the normal thing.

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Disability does not make me ‘impure’. That’s why the gods don’t mind me giving them an offering from my scooter. Like here, in which I sit on another beast of the Demon Electricity! This one is made of Iron! [Image: Me on my scooter holding a piece of paper and a cup. I was at a Pagan Federation event in which I called on many deities.]

My polytheism/Paganism celebrates my entire human experience. Does yours?

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It’s coming to eat me. I don’t know why I appear to be finding this amusing. [Image: Me wearing APAP face mask.]

The River of Justice

I’m in a bad place.

I’ve had two months of attempting to get my university to allow me an interruption to recover from some serious health problems I’ve had over the past year. I don’t know whether I should be resting, or working my arse off in an attempt to meet my deadlines.

I’m having a (not unrelated) mental health crisis and am trying to find the money to see a specialist autism psychiatrist. There are few of those on the NHS, and none in my area. This will be difficult to raise the money for. Then I have to go to the pain clinic next week, knowing that pain clinics can be dreadful experiences for disabled women in particular. I’m trying to deal with some awful experiences with my GPs too. My poor spouse is attempting to support me through all this, which causes other problems. Around me, the dominos fall one by one.

I haven’t done any ordered spiritual practice in maybe six months, except for (rare) incredibly loose meditation and off-the-cuff brief rituals. As someone who finds great order and joy in ritual, not being able to do it for so long is terrible.

I feel deeply mired in a vicious cycle that I can see no end to.

My Ogam fid right now is Ur. Shroud of a lifeless one; in cold dwellings. I am buried deep in the dark earth, and I don’t know how to claw my way out.

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Image: Ogam fid Ur

In a Field

So you can imagine that I was looking forward to my little break at the camp I’ve attended for (I think) three years now. Not a long time, really – but this is a community you can fall in love with very fast.

Without going into some details that I’m not ready to broach yet, this was a hard week for me at the camp. I was doing a thousand things all week, rushing between events that I was facilitating and Ogam reading sessions I was doing and supporting other disabled people. That was the good stuff. Then there was the less good. I was excluded from things that I should have been included in – maybe unwittingly, but who knows. I was made fun of when I raised certain accessibility-and-inclusion issues. I was ignored when I raised others. In common with other years, a feature of opening ritual was a fabulous spiral dance that no one had warned me about, so I sat there being stared at and feeling like a lemon. For a talk I was running on accessibility, I was put in a venue that was inaccessible to me. I was allowed to be ambushed by someone I did not need to be left to deal with, allowed to be put in a situation that made me vulnerable as an autistic person. There were times when I was too overwhelmed to go into venues because I was couldn’t deal with the sensory and people overload from poorly-designed environments. I ended up in my wheelchair on the last day, entirely dependent on my spouse for getting around between venues while working, because my scooter batteries only last three of the four days of camp. I had several emotional breakdowns – quietly, in my tent, attempting not to ruin anyone’s camp experience.*

These are all issues that are very easy to individualise. You could say that I found it difficult to deal with people because I am vulnerable. But vulnerability is social – it is something we do to people, as a society, when we put them into unsafe positions. You could say it’s my own fault if I can’t be in loud spaces or can’t get around packed cafes. But someone chose the design of the camp and of the venues, and repeats that design from scratch every year. You could say, as people have been telling me for a while now, that this is a camp in a field, and nothing can be done about that when it comes to accessibility. And yet we have hot showers, and huge tents with beds for hire, and enough electricity to host exciting bands. We are not living as close to the land as we think we are, in this back-t0-nature camp. There’s nothing natural about disablism and exclusion. We create it.

At one point, I stood in the centre of the field, wondering why we still have no lit paths back to the accessible camping area, why we still have no electric mobility aid charging points, why people’s mental health difficulties or triggers or physical needs still aren’t taken into account when we design rituals, why we don’t have a hearing aid loop for deaf people, why the showers are still a death trap for people with mobility difficulties (though slightly less so than in previous years… so that’s something… I suppose?) I know that there are other camps I could have gone to this summer, also in a field, that have all the facilities I mention here. I wondered, and continue to wonder, whether there was any point me being there, when my arguments for these things have been making no inroads towards change. And while I continue to push for these things alone, at a cost to myself.

From one perspective, much of this was because it was a stressful year for everyone at the camp, and things were very difficult, and things get overlooked as a result.

But as my friend said yesterday, what and who is it that suffers when things get tough, in this and many other institutions? It’s the oppressed people and the vulnerable people. The ones who are included as an afterthought, not as a central value and joy of the community. And that is an important lesson.

Because it is absolutely not just about me. I am not the only person whose vulnerabilities were exploited and whose needs we did not have enough resources for, this camp.

Creating Channels for the River of Life

Water flows down channels. The digging of new channels to bring in other streams – outsiders and excluded people – is difficult. That’s ‘inclusion’. Beginning with channels that bring all the streams into the flow at the start – that’s justice. That’s not easy either, but once it starts, the great river of true, diverse, and deeply honourable community can be the long-term result. And what a river it is.

Communities create thoughtforms. We choose what we value, what we honour, what we want to be part of, and what we want to be part of us. The result will always reveal the architecture of the thoughtform – of the tribe, and of the institution that surrounds it.

These are the flows of the Xartus – the great tree of life, of the pattern of the universe, whose pathways of justice we can either move along, or resist. Or, to put it in theoretical terms: political philosopher Paulo Freire says that, in the long view of our evolution, humanity tends towards humanising each other, rather than dehumanising. I suspect that he is almost right. I think we co-create the universe around ourselves and our communities. That if we choose to tend towards justice, we will tend towards justice. But if we choose to tend towards oppression, then we create a world of oppression.**

For We Are Not Yet Free

I’m not unaware that this post could cause controversy. But you have to start from the place where you are called to stand.

There was much I loved about this camp, this year. I loved the people – the wonderful tribe that grows up around the camp. It takes me multiple years to make friends and to know who I can trust, and this year I was particularly honoured to get to know some old friends much better and to meet some fantastic new ones. I loved reading Ogam for the most wonderful people who were willing to put up with me. (Am I the world’s only dyslexic Ogam reader who has to sit and count the strokes? I do hope not.) I was honoured to be asked to do things to help the camp – not least to be asked to embody the Goddess of Life in a ritual. (A disabled Goddess of Life? I may have got a bit teary-eyed at being given the opportunity to be so visible in my unavoidably embodied, reminder-of-death self.) I was delighted to be so busy that I am now more tired than many non-disabled people will be able to imagine, and it’s totally worth it. I was honoured to be given a bottle of mead in exchange for a reading; to be thanked for making camp a more accessible and inclusive place; to be part of a growing, wonderful queer community that now makes up part of the life of the camp; to benefit from the very hard work of the people who create the camp.

But I stood in the tension, in the liminal spaces, where I live. In the indescribable joy of hearing a queer-celebratory poem that reinterpreted myths of old gods, I also heard its sad undertone of the divine queer lovers’ inevitable return to the goddess. For we are not yet free. In the shock and anger and fear of hearing my daily reality laughed at and my very ground of being rejected, I knew that while things have improved, they will never improve enough. For we are not yet free. In the paradox of loneliness of my retreat from an environment I could not cope with, I had no choice but to cut myself off from friends and support. For we are not yet free.

Without wanting to sound too ‘up myself’, I think maybe I’ve had a small effect on the camp, by standing in my space and my truth. I suspect I was one of the first people at the camp to turn down hugs, particularly in the closing ritual, where there is a cost involved in saying “I can’t hug you – I can become overwhelmed by touch from those I don’t know.” I saw people’s conflicted faces when I first did that, three or four years ago. This year I experienced people asking me, and others, whether they could hug us. That is huge. It’s not just my doing, of course – but if I have helped to contribute to a growth of consent culture at the camp in any way, maybe my work has been worth it. I have talked to a number of people about how things have changed in terms of accessibility while I’ve been involved with disability work there, and that’s good to know. As much as change is not coming as fast as I want, this is becoming an issue that’s important to at least a few people. My accessibility workshop was small, but held space for some great conversations and creative ideas. Maybe things in our wider Pagan community will continue to change, very slowly, as we build new channels for the course of the river of life.

But there must always be a balance between what things cost and what they are worth. And I always have to ask, to quote my wonderful teacher Cat: What am I doing? And why am I doing it? I have boundary issues. I am too quick to say ‘yes’ to requests – I forget to be sure I can cope with the fallout for my body and mind. Partly, I take on so much because I am so excluded from so many things, and I want to fight my way in. I don’t want to be kept away from camps because of poor access. I don’t want to have to leave druid orders when they don’t want people with mental health problems involved. I want to go to moots and community events even when most of them are upstairs. But the exclusion is about them, not me. It is not always my job to fix it.

And there is a question that comes up time and again. The question of whether I want to be part of any community – however wonderful in many ways – that so persistently cannot make space for me and my people. Because we are not their priority. And that’s a much more terrible thing than it may first seem. What am I saying about myself and my value if I consistently demonstrate that I agree with them?

However much I love the tribe, however much I love the camp, I don’t know if I can continue to let that love and celebration be at a cost to me and mine.

“Well the Mississippi’s mighty
But it starts at Minnesota
At a place that you could walk across with five steps down
And I guess that’s how you started
Like a pinprick to my heart
But at this point you rush right through me and I start to drown…”
– ‘Ghost’, Indigo Girls

*I am ironically ruining that by talking about it now. But silence is rarely the solution to anything. It just took me too long to work that out.

**Oppression is never accidental – it’s always chosen, but sometimes we don’t notice the tiny choices we make every moment that create it.

30 Days of Practice: Orlando, the One Sheep, and Me

I was doing so well last week. I was so proud of myself for doing at least some of what I’ve committed to (the daily devotionals – I’ve had a total failure mode around podcasts, but a post on failure can wait for another day). I was telling myself that I was doing really well. Am I not such a balanced spiritual person? Am I not such a great activist? Am I not so good at being a disabled person in a disablist world? I thought that maybe the key was to keep telling myself that, keep thinking positive, keep ‘acting great’ to be great.

And then there was Orlando.

The day before yesterday, my friend messaged me to tell me about the vigil. I was desperate to go, but unlike many of the people who went (probably), I had to think very carefully about going. Every moment had to be planned – from getting there (can’t park in Soho – too scared to get buses at the moment), to being in the crowds (will I get scared and have a meltdown and be an embarrassment to myself and everyone with me?), to getting around Soho (terrible accessibility of streets and I don’t know if I have the energy for pushing myself around), to going home (will I be able to find a taxi?) A huge amount of spoons had to be measured out and used – see later in the post for what that means. Another wheelchair user passed me in the crowd at one point, said “I’m glad I’m not the only mad wheelie here”. I knew what she meant. I felt vulnerable and stressed out for the whole thing. That was helped immensely by my amazing friends who stood between me and the crowd, and helped me get around, and did lots to support me – I couldn’t have asked for more support. But there I was, thinking about myself. Fifty people had died and more had been injured… and I was worrying about my comfort.

Then, without giving myself a rest, yesterday I spent seven hours volunteering, and being in settings where my brain and body do not cope well. After the first five-hour meeting (hardly any breaks), I came home briefly and I so desperately wanted to go to bed. It was serious desperation – and the idea of being around people and having to behave like a neurotypical person in a meeting was terrifying. My body was screaming at me and my brain was already beginning to hit ‘shutdown’ territory (which happens to some neurodivergent people after a long time of fighting to appear neurotypical and wearing ourselves out). But I went out to the next two-hour plus meeting anyway, because I had said I would, and being true to my word is part of the virtue of Honour. But I had forgotten to take stock of quite how much things had affected me this week, including the attack and the vigil. I was seriously running low on spoons. And there I was, thinking about myself. Again.

Much better people than me have written about Orlando. People who are writing, and silenced, from within the Latinx LGBT community, like Vincent Cervantes, and people writing about being Muslim and queer at a time like this, like Amanullah De Sondy. People who have called for voices to be amplified that are not being heard, in the midst of the narrative-creating and the news biases and the many, many agendas. People like Mariella Mosthof and Ferdiad and Theo Wildcroft and Pat Mosley. I’m seeing many white LGBT people pondering intersectionality and privilege in the wake of this tragedy. It’s important stuff – lived social theory, social justice in writing.

It’s also not helping. To admit this is to demonstrate my horrendous privilege. I can actually sit in my comfortable house, with its decent security, and know that I’m probably not going to be attacked tomorrow (although the rate of disability hate crime is rising and I feel more unsafe every time I leave the house). I sit here as a white, rich person (and as a neurodivergent* person and a disabled person who seriously struggles with life, and doesn’t admit that enough). I am someone who will never worry about where my next meal is coming from (someone who has been told by doctors for ten years that I’m making up my illnesses, and recently found out I’ve been denied treatment for one condition for at least that long, as a result). I am someone who can afford to run my car and even the taxis I need to get around, to help me avoid the struggles that most disabled people face while out and about (someone who, on account of using a wheelchair, nonetheless has to plan life in exceptional detail, and who, on account of neurodiversity in an ableist world, doesn’t cope well with the execution of those plans). I am someone who lives in a country with an NHS and will never go hungry in order to pay medical bills (someone whose chronic illness regularly ruins my life and never, ever lets up – even when I ‘look’ OK). I am someone who can send my PA out into the world to do things, and thereby avoid some of the daily disablism and abuse, because I can afford a PA (someone who gets shouted at in the streets and often has to tell people to stop pushing my wheelchair without asking me because you might be about to break my fingers, not to mention taking away my agency and my right to attempt the hill on my own and also my right not to be grabbed by a bloody stranger).

I think my battles matter… to some extent. But I am struggling to balance my fear and exhaustion with my incredible privilege and my safety and my very comfortable life. It’s difficult. Those of us who have wide intersections in our lives between privilege and oppression sometimes struggle with this. It’s OK to admit it. But also, it isn’t.

I am not a queer Latinx. I am not a person of colour in the LGBT community. I am not living under US laws, with their bathroom segregation and removal of rights for trans people, or in US culture, with its violence towards my LGBT siblings (especially trans people). I am not a trans person on the American continent or in other countries, at high risk of being murdered, and at risk of having to survive via sex work in order to live and to pay for surgery (associated with even more risk of murder). I do not live in a country where it is illegal for me to be in a same-sex relationship. I do not live at a time when I could be sectioned or worse for being attracted to people of my sex or for being gender variant. There is so much I should be deeply grateful for.

But I am still writing a blog post about me, not about them, today. I am that person. I think that, today, I would rather admit it, than pretend to be better than I am.

It’s a fact I’m trying to take on board, that this tragedy has clearly affected us more than others (as an LGBTQI community) because it relates to us. It’s human to feel closer to our tribe than to the rest of humanity. It’s also deeply problematic.

Two metaphors: spoons and filters

Two metaphors are useful to talk about, at this point. ‘Spoons‘ are a metaphor widely used in the disability and chronic illness communities, to talk about measures of energy (or of coping skills, or similar). A lot of non-disabled people have at least enough spoons to get through the day. They may use one for a shower in the morning and one to make breakfast, but they still have two hundred left. In comparison, I may start the day with twenty. Then choices have to be made. Will I be able to make myself cups of tea today, or is it more important to be able to work? When I’m having a day with a few extra spoons, I may ‘look’ like I have as many as most people. But I’m still calculating in my head all the time. Do I have enough energy to buy the food that I’ve been asked to bring to the meeting, and still make it through the meeting? Do I have enough spoons to get myself lunch at the conference, or do I just have to sit here hungry so that I can get through the next talk without having to leave? Am I going to manage the whole of this event, or am I going to run out of spoons or the ability to act neurotypical, and have to run away (and be stared at as I leave oh gods please stop staring at me)?

The other useful metaphor is that of filters. I live my life filtering out my neurodiversity and its effects. I work hard every second of the day, using a lot of energy, thinking consciously about how to act in seminars and with supervisors and with friends and in meetings and in crowds and in pubs and in shops and on public transport. Imagine needing to think actively about every single thing you do, a mix of trying to get your brain to function in a world that you don’t fit into, and trying to act like it’s all unconscious and normal for you. Slowly, as I do more and more of this, and get more and more tired, my filters start to drop. You’ll begin to see more and more of the ‘real me’. You probably won’t like her – she’s irritating and unhelpful and gets a lot wrong.

Then the filters will fall away entirely. And then, collapse. Shutdown, or meltdown. A total giving up of brain (and body) that means nothing else is possible – literally – until I am out of ‘danger mode’ according to my neurological systems (which are far better at protecting me than I am).

Back to practice…

Last night, after the meetings were over, I did my daily devotional as planned. (I was too wired from ‘performing’ to sleep, anyway). I’ve been working with empty shrines, on the concept of stripping everything back, nothing left but myself and the Divine:

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Picture: my shrine to Beara, currently empty except for candle, taper and offering bowl.

After all the fear and struggles of the past few days, the emptiness hit me.

I just sat there, at Her empty shrine, and sobbed. The candles burned down. Darkness came. I sat. I loved. I longed. I hated myself. I was afraid. I wrote poetry in my head. I sat. I didn’t wake my spouse. This was about me, and my goddess, and the darkness, and the silence, and the empty altars – and me, empty. I sat.

Lighten our darkness… and by thy great mercy defend us from all perils and dangers of this night.[1]
For the night is dark, and I am far from home.[2]

Soon I’ll start building up my shrines again. Starting with an ancestor shrine for the beloved dead of the Orlando shooting and of the many, many other terrorist attacks and state-sponsored violence going on around the world.

*                                        *                                        *                                      *                                         *

Here are two relevant stories that I’ve been pondering recently – told in my own words, so don’t trust their theological accuracy – they are very much my interpretations.

The One Found Sheep

A shepherd had a hundred sheep. He could always tell his own from the others in the fields — he knew their sound, their movement, their little ways. Every evening he took the measure of his sheep, and there they were, always a hundred of them. And then he could sleep as dusk came in, his shepherd’s crook curled around him, the sound of his sheep’s voices a constant in his dreams.

One evening he counted his sheep… and there were ninety-nine of them.

He panicked. Who is missing? Where are they? He searched the places that he could reach and still have his other sheep in sight, but the lost sheep was not there.

And so he left his fields, and left all the rest of his sheep, and went into the roads and out into the far edges of the country. And there he found it, lost in a ditch, unable to get itself unstuck.  

And he carried it home.

– From the Christian tradition

The Myth of Sophia

Sophia was the first creation of the God. She was his Wisdom.

Her daughter, Sophia the younger, was beautiful, but she was not satisfied with her existence, nor with her heavenly consort the Christ. She looked down into the mortal realms and saw a great Light. She longed to be with it. “Why,” she said to the God, “can I not bring the world light and life, and create as you do?”

The God sighed a great, defeated sigh. “You are the child of Wisdom,” he says. “If you think it is wise, go, and create as I do.”

And so, enchanted by the world of matter, Sophia fell. And she created. But her first creations were born of chaos and darkness and fear. Her first son looked at the world and wanted to possess it – and he could not see that anything existed above him. From darkness he ruled the world. He denied wisdom to Adam and Eve.

But Divine Wisdom stayed with them.

The earth-bound Sophia could see that humanity was lost. She sent them the Serpent to teach them that they could think for themselves – but though they began to, they were already corrupted by the darkness and weighed down by the struggles of a corrupted world.

But Divine Wisdom stayed with them.

Unwilling to leave humanity alone, Sophia called on her mother, Sophia the Elder, to send the Christ, if he was willing to leave heaven and come to join her, to help this world and its people.

“And the Logos was made flesh, and dwelt among us.”

And Divine Wisdom stayed with them.

– From the Gnostic tradition

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What if we are not always the sheep, but sometimes the shepherd?

What if we are sometimes Sophia, and sometimes the Christ?

What if we can only rescue ourselves?

And what if we don’t matter?

I have no conclusions. There is only silence, and the empty shrine.

Video: the Gay Men’s Chorus singing at the London vigil for Orlando. A wheelchair’s-eye view.

ETA: The list of the dead and injured in last weekend’s shooting. I’m sorry it took me so long to think to add this to my post. As the Wiccans say, what is remembered, lives.

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*Neurodivergent: a non-medical term used by the community of people affected by autism/ADHD/dypraxia/dyslexia and many other neurologically-affected different ways of being. Those of us who think differently from the ‘neurotypical’ people.  The world is full of neurodiversity. We are different, but not less.

[1] From the traditional night service of the Church of England.
[2] From the hymn ‘Lead Kindly Light’.

An hour in the life of a… priestess?

Blogging Priestess series: #1

Now playing:

Woke up this morning and the streets were full of cars
All bright and shiny like they’d just arrived from Mars.
And as I stumbled through last night’s drunken debris
The paperboy screamed out the headlines in the street:
Another war and now the pound is looking weak,
And tell me have you read about the latest freak?
We’re bingo numbers and our names are obsolete –
Why do I feel bitter when I should be feeling sweet?

Hello, hello – turn your radio on
Is there anybody out there? Help me sing my song
Life is a strange thing
Just when you think you learn how to use it’s gone…

Woke up this morning and my head was in a daze
A brave new world had dawned upon the human race,

But words are meaningless and everything’s surreal –
Going to have to reach my friends to find out how I feel.
And if I taste the honey is it really sweet?
And do I eat it with my hands or with my feet?
Does anybody really listen when I speak,
Or will I have to say it all again next week?

Hello, hello – turn your radio on
Is there anybody out there? Tell me what went wrong
Life is a strange thing
Just when you think you learn how to use it’s gone…

– Hello, Shakespears Sister*

The Morning

“We’re bingo numbers and our names are obsolete…”

This morning I woke up crying. (This isn’t a rarity for me, although the further we get into medical explorations of my sleep disorder, the more I’m very occasionally allowed a few sleeping pills, and that helps. I’ll sleep better tonight. Not so many of those pesky dreams.)

Then I went onto Facebook and twitter to check that none of my disabled friends are (more) suicidal (than usual) today from battling in the long war society is raging against us. I remember when I used to go onto Facebook and twitter to procrastinate from work. Now I can’t go near them a lot of the time, for fear of what I’ll read – ‘benefits’ measures get ‘stronger’, and we are pushed ever further towards the edge of the cliff. Falling off, one by one.

Next: remembering that I have no support worker this morning. (There’s only so much money for these things.) I pondered how (if) I was going to have a shower today. (I have so much more running/hot water privilege than almost everyone else on the planet. I must not let myself feel self-pitying about having to go some days without. But still.)

Then I remembered that I won’t get any help making breakfast and lunch today, what with absence of support worker, and considered my various lifehacks that resist a society that creates our vulnerability and refuses to support us through it. These are usually linked to my financial privilege, because it’s what I have that can help make this life work — I go to a cafe, park close to the door, struggle in, and let the low-paid exploited precariat compensate for a stripped-away welfare system (that our parents knew would last forever), and do my privileged, non-manual knowledge work. We oppress and are oppressed. It’s the way of this world and its systems… for now.

Then I finally get to thinking through the state of my body. It hasn’t been doing well recently. Over the past couple of weeks I have done a lot of driving to meet people, to help people, to be with people. I helped a friend whose father has died to clear out his house, just for a couple of days (I really wished I was up to staying longer). I wouldn’t change that, though, despite how much pain I’m now in. My friend is disabled herself. Most of her friends are disabled. We come, and we probably cause far more problems than we solve, but we give our bodies as an offering to the causes of friendship and resistance against oppression. And then an email from a family member who is going into hospital and who I want to help… and thoughts turn to other family members and friends I would like to support far better than I do, or just to offer more time and energy to sustain our friendship… There is a sense in which I do much of this bodily harm to myself, willingly and knowingly. (Oh how the DWP would love to hear that.) But only because I insist on maintaining my integrity and links to community in a world where systems of disability oppression are self-sustaining. Systems of oppression are embodied, not abstract. They break us, again and again. We carry on.

Then my partner sends me a message about a clarification on government policy on disability ‘benefits’ (they come across these things in their job), and I’m crying again. Because I may have to write that 40+ page application to renew my ‘benefits’ at exactly the same time I have to hand in my thesis. It’s a kind of strange irony – or is it the opposite? The famously appalling benefits process (that destroys lives and self-esteem and leads to suicide, that disability scholars and activists and many others have critiqued in much detail, to little effect) may catch up with me (again) just when I am trying to make my dent in these systems, my little attempt at critiquing oppression. That I will be most degraded by the state, for its own very conscious purposes, at a time when I will be on the last push to get out my biggest stab at resistance against this stuff. It’s… oddly fitting. And fits this government’s ideology perfectly.

The Moment

And now here I am in my shrine room (well, the shrine corner of my office). And because of all the chaos in my life at the moment, it currently looks like this.

IMG_1316

I was hoping to meditate. I don’t know how effective that will be.

On the other hand. I honour a deity of Chaos. And whenever I try to be tidy, to go with the mainstream, to stay in control, she swallows the ground beneath me and vomits up a new mountain. I die and am reborn every thousand years. I come from stone, and to stone I shall return. Either follow in the wake of my blast, or get out of the way.

And everything shifts into a bigger perspective.

The Concept

I am pondering the concept of ‘priestess’ at the moment – planning to start a new blog series here on it very soon. I am thinking about issues such as: is this a gender-essentialist concept? Is this a female-subjugating archetype? Can a Jungian archetypal approach to the Work ever be a useful one? What about the connection of ‘priest’ and its variants to hierarchy – does that have any relevance anymore, and does it continue to oppress the powerless? And, then, if any of these can be resolved in any meaningful way: what is the Work of a priestess?

And so I stand in front of an incredibly messy shine made with human hands to a distant deity who lives in a mountain and who often pays little attention to the fragile creations of people — but who also, right now, sees the mess of boxes all around it, and approves of them far more than the pretty trinkets. The boxes that are full of things that I am ebaying for the aforementioned friend who can’t deal with them herself. That speak of the Work of – whatever I am. When I claim the space of a priestess, I don’t call on the hierarchical associations of the term — I am an anarchist (of a sort) who walks in the shadows. Nor the female/gendered ones — I am non-binary, autigender, gender-binary-rejecting, and aim to be non-essentialist in all things gender. Maybe none of these oppressive associations can be extracted from the term now. But there’s something there that has always worked better than ‘witch’ (I’m not magical enough), than ‘druid’ (I’m not white-robed-respectability enough), or any of those identities that can be reclaimed for better things than they once intended. Its shadow side speaks of standing with and for communities and lone liminal people living on the margins, shouting at the forces we call gods for support in our cause, walking alongside those who have no one to walk with them, and calling down symbolic power that was always already within us. I want to know if this archetype can be radicalised, can be useful for liminal people. But ultimately, if it can’t, the term matters far less than the Work.

I take a breath, and start on the Work again.

When you’re standing by the roadside
And it’s a long way to go
Ah, to carry me
to carry me, friend

Together in this mad land
far from truest of hands
well I’ll carry you
if you’ll carry me, friend
Oh, carry me…

If we can take the time
we’ll build ourselves a road
from what we know
each take our part
and now’s the time to start

Carry Me, The Levellers

 

*Thanks to Cat Treadwell for reminding me about this song, which was on repeat for much of my teens. Oh look, it’s on repeat again.

31 Days of Offerings – Days 20-22: Attack of the Migraines

So I have totally failed to do any extended offerings for the past few days. I’ve been attempting to maintain my very brief offerings and practice – a hearth lantern lit with a prayer for protection for my house, candlelight for Beara and Duibhne, little offerings to the Good Folk.

And I’ve had one slightly more intense encounter with a goddess in which I whined about no one knowing her properly… which I’ll get to soon.

Mostly, though, I’ve been busy warring with the migraines all day, and too tired to do anything at night. I’ve been plagued with episodes of chronic daily migraine for years now. Just when I get them under control with a new medication for a few months, the medication stops working, and round I go again with daily torture for a few weeks (longer if I’m unlucky). I can’t work, write or think. It completely sucks.

Such is the world in which we live, though. We’re privileged to be human, to be creatures of the earth. I don’t hold to all that ‘spiritual being having a human experience’ stuff. I rather think ‘spiritual’ is a Cartesian dualistic social construction we created in order to pretend that one part of our lives was special but the rest of it wasn’t. While that might have made the special stuff seem extra-special, it did nothing for the valuing of the rest of our lives. I want to value every part of my messy, physical, real human life. 

Even the migraines.

(I think.)

31 Days of Offerings – Day 17-18: Community Redefined

31 Days of Offerings(1)

Offerings don’t have to be a solely Pagan affair. We do too much separatism, for people who claim to believe that the world itself is sacred.

Last weekend I was heavily involved in helping to run this conference (see also here, where a group that participated has reviewed it), for which I’ve been on the planning committee most of this year (and I do a lot of their publicity, and was their social media person, and tweeted on the day, and, and…). I’m still recovering! I’ve not really talked about this much in Pagan circles, because, well, Christian.

But I grew up in a Christian context (actually I was about 30 when I left church), and I believe my Wyrd is tied to that community. It is part of my Work. I’m not doing a PhD on Christianity and disability for my health (and definitely not for my wallet). I believe I have a calling, and activism around disability and churches is part of that calling.

Photo: St Martin-in-the-Fields church, London

Photo: St Martin-in-the-Fields church, London

Other offerings I give to a broad interfaith local community include inter-faith educational work, work with the Druid Network, and various other things that I do with the aim of improving dialogue between religious communities and serving the local community generally.

Ultimately, as well as an offering to the people around me, this is also an ancestor offering. Most of my ancestors were Christians. Social justice and Christianity was important to many of them, I gather from stories told about a few of them.

My exploration of the story of Narnia and its less-acceptable characters is all part of this tangled web of a spiritual-religious journey that never ends. My relationship with a very liminal deity probably is too.

I am a proud non-active Anglican (while also a polytheist and modern druid), living on the edge of the community that is itself living on the edge of the churches: the community of disabled Christians. Religion isn’t always about belief. In fact, in most of the world, it isn’t really. We’ve taken American evangelicalism and tried to apply it to Paganism as well as to every other religion in the world – but religion for most people is about action, much more than belief. Do the stuff. Embody your practice. Be.

Liminality. It’s not just about Otherworlds. ;)