How it used to go:
Calculate when it’s 10 hours since I took my morning dose and can therefore take the evening one and go to bed.
Go upstairs to fetch hottie. Put kettle on.
Go back upstairs because I’ve forgotten to check if more morning pills are needed.
Calculate how long it is since I had my dinner, because the pills don’t go well with an empty stomach.
Try to remember to eat the requisite snack before doing my teeth.
Take handful of pills (2 small, 4 big) and bicarb as my stomach quite rightly doesn’t agree with me eating right before bedtime
Do hottie, pour out glass of smoothie to take morning pills with (see empty stomach)
Carry it all upstairs
Note how the day has been on my chart for monitoring such things
Go to bed.
How it goes now:
Do bathroom stuff
Go to bed
Lie there wondering what it is I’ve forgotten to do.
Just as I’m trying to come to term with the feelings of abandonment at the prospect of not having to present myself at the hospital every few weeks once the chemo is finished – I know, I know, it should feel a pleasure not a loss, but it doesn’t. They warn you about this in advance, like a type of Stockholm Syndrome – I’m invited to join a clinical trial into the potential protective effects of aspirin. This will require regular check-ups there for the next five years. Five years. Abandonment? Not yet, I’m pleased to say.
Also, of course, it’s nice to think I’m giving something back.
One of the most egregious mistakes in print (imho) is when writers, usually but not always in film reviews, confuse “psychotic” with “psychopathic”. I have pointed this out to the Grauniad, you will not be surprised to hear, on many occasions. And this time it worked! Within hours I had an email back from the readers’ editor dept not just agreeing with me but saying they will amend the online article, and consider how to add further clarification to their style guide, which all their reporters are expected to follow.
I may be spending most of my days in bed, but it’s giving me much more time to tell the world what I think needs improving.
It’s a funny thing how even people who can accept that you’re ill still believe it’s good for you to get up early.
My landlord is planning to replace all the doors and windows in my house (in winter?) and when I said I’d need good notice of when it would be, so that I could go and stay elsewhere for the duration because I’m ill and don’t wake up early enough to suit builders, he just laughed and said maybe I’d have to learn to. Even an oncology nurse, as she was giving me the drip that contributes to me currently sleeping 13 hours a night was unsympathetic with me complaining about being required to be there for 9am (and it’s an hour’s drive away) and said maybe I should go to bed earlier. I’m already in bed these days at 9pm, how much earlier could I go without missing my dinner altogether?
It’s like there’s supposed to be some peculiar virtue in early rising. Like early hours are for proper stuff like working and later hours are just for being lazy and selfish. Despite the fact that most days I don’t even get out of bed, I should still be doing so earlier than later. This seems to me to derive from Christian traditions of mortifying the flesh, the welfare of your soul versus the welfare of your body. I’m glad that Pagan ethics suggest listening to your body, giving it the sleep it needs, and working with mundane realities not against them.
Next time, I’m coming back as a lizard. I shall lie in the sun on a Greek beach and eat leftover watermelon. For the life after that, I might consider something horribly challenging again.
It’s now 6 months since I had my tumour removed. I’m two thirds of the way through chemotherapy, which isn’t too bad except the fatigue is kicking in more, and gets complicated by worsened ME/CFS and a deteriorating right hip, which severely limits my walking ability but can’t be remedied until the cancer stuff is sorted.
All in all it’s not a bad life. It’s restful. I read a lot of books, spend a lot of time on Facebook, and if I wake in the the morning not feeling like I want to do anything difficult, like getting up, I don’t. No-one cares if I’ve washed my hair or put on clean clothes, because no-one knows. If I have to go out to the shops, there’s dry shampoo and deodorant to tide me over. I’ve friends I can call on if I need to for shopping or more books or general cheering up. And if I don’t contact them, they’re not offended. Cancer really does give you a “get out of jail free” card. And I’ve got a Blue Badge.
But, I’ve spent the last six months or more trying, in the odd moment of clarity, to do more. Trying to be more mindful, to do just that little bit more, to derive just a smidgeon more meaning from my day. It’s how all the advice goes. Try to get dressed every day and lie on the sofa instead of in bed. You’ll feel better in yourself. The chemo fatigue will be better if you take a little more exercise every day. Stay positive. I’ve tried. Tried to build healing practices into my daily routine. Made myself get out of bed. Looked for how I could deal with it all just a little bit better.
Then just this week, on about the third day in bed without making myself get up, get dressed, etc, I thought, sod it, no. I’ve only another two months of this to go before things – hopefully – start picking up again. Maybe I’ll just give in to how I feel. Actually, I’m really happy lying in bed with a hottie and a good book. So long as I keep my benefits correspondence under control, and roll up at the hospital every three weeks for my new supply of drugs, not much else matters that can’t wait til a day when I feel up to confronting it. If I drift away too far into the parallel universe of my cancer bubble, sooner or later someone will notice and call me back. You could call it mindfulness, being immersed in the present moment, not striving to achieve something “better”.
This is so much at odds with all the advice we receive. However ill you are, there’s always something you should be doing to make things a bit better. Eat more vegetables. Do something rather than nothing. I once had a horrific experience with an endoscopy, which revealed nothing more than a hiatus hernia – not good news, but not exactly calamitous. Following which the kind, caring nurse insisted that I would feel better if I lost weight. Would this treat the hernia? No, it would make no difference at all. But I would feel better in myself. She was a fat as me, so maybe this was just her own issues, but it was as if she needed to offer me something I could do, rather than just acknowledge how I was feeling.
This goes back to the old theory of illusions of control. Ages ago (it wouldn’t exactly be allowed now) there was a psychology experiment where they gave a series of mild electric shocks to volunteers, and asked them to rate each one for how painful it was. In the control group they just got the shocks. In the experimental group, they were given a button they could press to stop the shock if it became unbearable, though they were asked not to use it, as doing so would mess up the whole experiment. None of them did press it, which is fortunate since it was actually just a dummy button, connected to nothing. But, in rating the painfulness of the shocks, the experimental group perceived them as significantly less painful than the control group did. Why? Because if you think you have control over something, it’s not as bad as having no control. Women who have been raped have this tendency to blame themselves – it was my fault, I shouldn’t have been wearing a short skirt, I shouldn’t have walked down that dark alley, I should have seen it coming. This is society’s conditioning of course, but it also has a strong element of, if it was my fault it happened, then I can prevent it happening again. Illusions of control.
I think this happens with illness. People want for there to be something they can do, you can do. They will constantly offer you solutions – avoid gluten, buy crystals, don’t use microwaves, Lemsip “sorts the men from the boys” – rather than sitting with the truth that illness happens, it’s a part of how things are. There may, of course, be things you can do to help your recovery, but there’s also a stress involved in always thinking, however ill you are, that’s there’s just something more you could, and should, be doing.
So I’m practising giving up control. Giving up trying to “do” my illness better. Giving up trying to analyse which of my medical conditions is giving me which problem. Giving in to idleness and comfort and not caring too much, not thinking too much, not pressurising myself. Enjoying what pleasures there are to be had. Just being me as I am now.
Amongst the rudely healthy, there is such an egregious culture of silencing those of us with chronic illness or disability, by praising those who keep silent. How many times have you heard it? “She’s so brave, she never complains”. “He’s so courageous about his disability”. Which means, I think, don’t tell me the truth: I can’t handle knowing what your reality really feels like. I don’t want to see your tears, hear your pain. So there’s this myth built up about brave silence, and we feel guilty when we break it.
Take the Paralympics. In general, they are a great thing, reminding the world that people can be differently abled and still succeed. But the interviews with the medal winners make me cringe, playing into this myth of bravery and success in the face of impossible difficulties. Othering us, as if we are a species apart, heroic as they could never be. “I always knew I could win gold if I tried hard enough”. Well no, that’s a sampling error. We’re hearing from this person because indeed they just won. We’re not hearing from all the people who also believed they could win but didn’t. Sometimes it’s not just bravery but access to support and resources that get you to the top.
Or take ex-military personnel, discharged from the forces after they’ve lost a limb, undertaking a sponsored walk or cycle from Land’s End to John O’Groats. Yes, that’s a great thing to achieve, if that’s what you feel like doing. But maybe it’s also because this was a person who was already competitive, driven, focused, that’s why they joined the army. And now they’re stuck at home with an adequate pension (we hope) but nothing to do. And plenty of energy despite their amputation. So they think up a challenge to keep themselves busy. That’s not being brave, that’s just them being them. It tells us nothing about the lives of people who aren’t like them. Some of us don’t want challenges; some of us are challenged enough by just getting through our day. There are no gold medals and TV interviews for that.
Or, “be positive”. Like being positive will make my illness go away? No, it doesn’t work like that, unfortunately.
Being disabled or chronically ill is a nasty business. You miss out on things. Life is hard work. Poverty and isolation tend to creep in. OK, there may be compensations, silver linings if you look hard enough or take enough of a phlegmatic view of it all. But it’s still tough. Disabled people should be allowed to say so, but we are silenced by this myth, created by well people for their own benefit, that the only good disabled person is a brave one. (Which doesn’t, incidentally, stop them whingeing and moaning at great length themselves if they catch so much as a cold).
When people I meet in the street ask me how I am, my answer these days tends to be “coping”. And if that takes them by surprise as not being the right answer I follow it up with “it’s better than not coping”. Why shouldn’t they know this?
When you feel in need of a good whinge, go ahead and whinge, I say. Whingeing is an act of political resistance against the dominant narrative of disability. Spare your partner and share your whingeing with the whole world.
I just had this piece published in Pagan Dawn, which I am excessively proud of, so am reproducing it here. It was written for a Pagan audience but is as relevant to people of all religions and none, I think.
“My law is love unto all beings……”
As Pagans in all our splendid variety, do we actually put this part of the Charge of the Goddess into practice? Do we really choose to include all, totally or partially? And what can we usefully do that will help us manifest inclusivity in our Pagan gatherings and practices?
First comes intention, and this can require some self-honesty. Yes, we may want to see ourselves as nice people, but actually we can be busy and stressed and under-resourced, and although we value our ritual community, that has to be balanced with all our other commitments to work, friends, family, self etc. So even when we do, in our hearts, wish our rituals to be inclusive to all, in practice we might not feel we have the time or energy to drive miles out of our way to give a lift to someone who is carless. That’s ok, if that’s your conscious choice. But sometimes it’s just that we haven’t really thought it through, haven’t translated an inchoate desire to be inclusive into more practical thoughts of how, when and why. And sometimes when not to, and why not to. And even if we are clear in our own heads of where we stand, is this something that has been thought about, discussed and consensed on by our whole group? Might that be helpful? Do we care enough?
It may be useful to break it down into the specifics of how the needs of certain groups of people can tend to missed, sometime inadvertently, sometimes maybe wilfully, and sometimes for entirely valid reasons. But let’s be clear about which and why.
One of the ones that most often strikes me (for personal reasons as much as anything else) is health needs. If you are planning a ritual or a group visit to a sacred site that requires a long trek to get there, or to a fabulous beach at the bottom of a steep cliff which will call for a very steep climb up again afterwards, or a ritual which involves standing for long periods of time, are you sure that everyone who wants to come is physically able to do these things? This may not be a question of major or visible disability: it could simply be arthritis, respiratory problems, common-or-garden old age. The problem with invisible disabilities is that are – obviously – invisible. So might it be worth explicitly checking, when planning a group outing, that everyone can physically manage it, and if not to consider viable alternatives? Of course there will be many people in the group who are assertive enough, or central enough, to say if they can’t do something, but there may also be ones who are new or shy and won’t volunteer this information unless specifically invited to. It’s not good to feel left behind.
One of my pet hates (and of others, too) is the concept of “Pagan Time”, i.e. that we are somehow beyond the dictates of clock time, and so it’s fine to turn up hours late for a ritual even though it means others will have spent that time sitting around waiting for you. Sitting around is ok if you have tons of energy: to those of us who can maybe manage two or three hours out of the house that day but not more, Pagan Time can seem selfish. Please try to be punctual.
As Pagans, many of us value working outside in nature, with the privacy that tends to come from a fair walk to get away from the crowds. So if someone who was a wheelchair user asked to join your working group, what would you say? Commit to wheelchair accessible venues at the expense of working in those places you really long to? Alternate? Say a regretful “no”, with reasons explained? These seem to me to all be valid choices, so long as they are consensual and explicit and the person in the wheelchair feels that it’s ok to ask for them to be discussed, not just subtly given the message of “please go away, we don’t want you”.
Also on questions of access comes financial privilege, or lack of it. If most of us drive, do we remember to think about those who don’t? If we’re planning a gathering in a remote spot far away from public transport, do we think about how those of us without cars can get there? If there is intermittent public transport, can we arrange the times of the rituals around the times of the once-every-two-hours bus? Even in a big city, if you arrange to meet in the evening have you checked that the ritual will be reliably ended before the last tube home? I spent many years without a car and reliant on lifts from some very kind fellow Pagans who went out of their way for me and never made me feel that I was imposing on their goodwill. Now that I am in the more fortunate position of being one who drives, I see it as a natural part of my place in this world of interconnectedness to give lifts to anyone who needs them, in part repaying all those earlier ones, and in part just because it seems right. And also to not use my power as the one holding the car keys to decide what time we will arrive and leave, but to check with my passengers first if they have particular wishes one way or the other.
If we are charging for an event, have we included a realistic concessionary discount? This isn’t just about charity, it’s about valuing everyone, seeking the involvement of all types of people, not just those whose way of life happens to mean they can pay top-whack.
And having all got to the venue, are there aspects of our work itself that be not as welcoming to all as we would wish them to be? Is our way of working as sensitive as we would wish it to be to people who are not of the majority culture, whatever that might mean? Do we care? Can we talk about the issue as a full group, or only behind the back of the person whose difference might seem a “problem” to the rest?
People experiencing challenging mental health or learning disabilities, or drug and alcohol problems can also raise questions. Paganism can attract many whose lifestyle is other-than-mainstream. It may be that your group could incorporate their way of being into the group’s activities, or it may be that you think that trying to include their needs would detract more than is reasonable from everyone else’s involvement. Sometimes you need to balance everyone’s needs. If a ritual is about being present and focused, it seems to me not unreasonable to not include participants who would be overly disruptive to this, for whatever reason. It may be different if it’s a private gathering rather than an open group ritual. But again, it needs thinking through, and honest replies, so the person doesn’t just feel unwanted.
Anyhow, as witches and others know, the world is not made of either/or but of both/and; of embracing paradox; not of binary choices but of using our magical intent to seek or create a third way, not compromise but benefit and growth for all.
And likewise for someone whose differences may be more of verbal fluency. To let someone have their turn to speak at a moot, but to not actually listen to them, and as soon as that person finishes speaking to ignore what they said and carry on as if they hadn’t spoken is neither inclusive nor kind, and again may leave them feeling unheard and unvalued. Men (still) can have a tendency to do this to women: to be silent when they speak, but afterwards go back in the conversation to where the last man left off. It’s infuriating. If you’re leading a discussion, use a talking stick to make sure everyone gets heard, not just the most vocal.
A problem of our socially stratified culture is that those towards the top of the socio-economic pile are awarded value and power while those towards the bottom are not. So if you are one of the latter and your experience of life so far has been that to people with more power than you your needs won’t be taken into consideration, it’s not surprising if you tend make this assumption in other situations too, including Pagan ones. So, privileged middle class people may be more articulate at asserting their needs and views, working class people in the presence of confident middle class people may feel silenced. That’s not anyone’s fault, but it’s the reality we unfortunately live in in this country, and needs to be borne in mind and addressed where we can.
And of course there are people whose different ways of perceiving and understanding the world also contribute hugely, and often in ways particularly relevant to Paganism. A friend of mine who is blind perceives the world through all manners of ways that help me notice how limited my spiritual practice is if I rely more on sight than a more holistic experiencing. Formal ritual often uses a lot of words and requires mental focusing of intent, something I myself don’t always have the concentration for. There are others who may not either, or not have the ability to memorise, or lack literacy to read out something written down, or whose native language may not be the same as everyone else’s. So let’s try not always using words or sight: groundings and invocations can be done with movement, sound, drumming, invoking deity with dance. Let’s look at how inclusivity does not restrict our options but actually expands them.
With all these issues, it’s maybe not so much that a person must be included at all costs, as that they shouldn’t go away feeling rejected, unwanted, marginalised, that they themselves are a problem rather than their specific uniquenesses are a problem in this specific situation. It can therefore be about thoughtfulness in how you do it, not just what you do. And that they get a chance to participate in and contribute to the decisions. In The Empowerment Manual, Starhawk’s excellent book on how to improve a group’s dynamics (including the dynamics of Pagan working groups: she is, after all, also a witch) most often her answer to problems is “feedback”. It may seem unkind to tell someone what you find difficult about them. But it’s often even more unkind not to.
Age, gender, sexual orientation also come into questions of diversity. Yes, the eightfold year is, amongst other things, about the journey of the Goddess from Maiden to Crone, and the God from Oak King to Holly King, and round again. But my working of this tale is that, whatever your gender or chronological age, the ritual is about connecting with those parts of you that seem particularly relevant to that time of year. So we can all celebrate our individuation at Imbolc, all contemplate what harvests we are reaping at Mabon, what death means for us at Samhain. That’s not about our actual age. Aspecting deity works through your relationship with them, not their similarity to you gender or age-wise. So do we really need the youngest and most attractive people to invoke the spring gods, and the oldest the autumn ones? Do we need a cis-woman to invoke the Goddess, a cis-man to invoke a God? If we do, fine. But if we don’t, let’s not just do it out of habit.
Children are another relevant question. My experience is that well-intentioned children, or those well supervised by their carers if needed, can hugely enhance a ritual. There is something particularly magical about, for example, the element of water being invoked by a 4 year old sprinkling your face with a piece of seaweed dipped in water. And having children present may mean their parent gets to come to a ritual they would otherwise have to miss. But sometimes children’s presence detracts from your ability to stay focused. And sometimes the ritual content would need to be different. Children dancing around a maypole at Beltane is good, children among a group of adults at Samhain connecting with their beloved dead may not be. Do you change the ritual or do you change who is invited? Or do two different rituals?
And finally, legislation. We are fortunate to live in a country that offers good legal protection against discrimination of all forms, including for being Pagan, and all the separate previous acts have now been usefully collated into the Equality Act 2010. A further useful law is the Human Rights Act 1998, which gives people in this country the rights to freedom of speech and religion.
But with rights also come responsibilities. If you are offering a service to the public, you are required by law not to discriminate on grounds of sex, sexual orientation, ethnicity and other protected characteristics. Anyone with a “substantial and enduring disability” has a right to request “reasonable adjustments” to the service on offer. Although you can decline to make these adjustments you are required to be able to justify why they would not be reasonable – especially if you are then sued using this piece of legislation. As Pagans, we tend to think of ourselves (well, I do, anyhow) as nice people doing our own private thing in as nice a way as possible. The suggestion that it would even be possible to sue organisers of a Pagan event brought huge – and hugely insulting – mirth at one moot when I mentioned it.
But it’s true, and it’s right that it should be so. A lot of the legislation has not yet been tested by case-law, so you can’t say precisely what is and isn’t ok, but in general small groups doing their own private thing can mostly do what they want: larger events, including those publically advertised or charging money, need to be more thoughtful. That is the responsibility of the organisers both legally and ethically.
So please let’s remember that accessibility means cognitive and emotional accessibility too, not just wheelchair access. Attention to diversity and inclusivity is not just ethical: done right it’s enriching for all of us. Permaculture teaches us that diversity brings resilience, that it is at the margins that most growth happens. We all gain.
Reference: Starhawk “The Empowerment Manual” 2011