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.
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.