Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Wednesday, May 20, 2026

In defence of silver-tongued fine dining

My interactive Fish 4 Ever installation.
Not all tinned fish is the same.
We *can* support better choices.
This *is* a hill I will die on. 
Here at Ecoville, we've entered another phase of skirmishes in our very protracted food wars. Will there be a peace treaty at the end of this one? I don't know. Right now I doubt it, but for a while I thought there might be. Lines on the map seemed to be shifting, fading even, although they had never officially been redrawn or erased. 

Don't call it a war, people said. It puts us into opposing camps and it's not "helpful". Let things take their course. And... I can see why they would say that. I know that a lot of my neighbours find conflict difficult and would rather not get into it. I don't personally love it. I don't seek it out. I don't manufacture it. And it's very tiring, having it out with people, and can detract from all the things we could be doing together to make the world a better place. Something something more in common. I know. 

But. 

When we created our policies and guidelines, many of which have been around in various forms for over 15 years now, they were not permissive. They were not emergent. They did not leave space for things to take their course. There were a lot of very specific requirements and restrictions on everything from pets to parking to planting. 

The ol' cohousing literature, such as it is, is clear that intentional communities need to have a vision, values, supporting policies and an agreed decision-making process. I think we were all broadly ok with that initially -- but a missing piece was "how do we examine these if we feel they are not serving us well as a community?" We've proved to be bad at that. I have my thoughts about why, which are essentially that some people saw moving in as the end of a process: this is who we are, and this is how we live. I've heard the phrase "this is what we did all this work for" more than once. And it was a lot of work, I have some sympathy for that position, though it has eroded over the years. I also have some sympathy with the position that if you're new, you should spend your first year or so listening and learning -- a bit like when you move into a house with a garden in the middle of winter. You just don't know what's going on under the soil till you've experienced a full growing season. But although we joined the community several years after it had been created, we did move into the very first house to be released, coming up 14 years ago now. You can't be the new girl forever. I mean, I've got medals at this point.  

And no one can say I don't put the hours in. I recently went on a course called Working Effectively With Community Conflict - led by someone who has written some of that literature and applied and refined her thinking over many decades of community living. There were aspects of it that I didn't fully agree with (which I may dig into at some point) but I stuck with it for the full 21 hours, and something really resonated with me. 

Essentially, she posits, there are three kinds of conflict that arise in communities like ours. There's interpersonal conflict -- the kind you get everywhere when people don't like each other or don't agree. You can deal with that or not, and whether you do might depend on how much it affects other people and how much anyone cares. Then there's structural conflict -- deeper issues which may manifest as interpersonal conflict but in fact come about because of the lack of a clear vision, values, supporting policies and decision making process (I expected these), but also lack of clear "red lines" (things which are never up for discussion - these can be in your vision and values but they need to be super explicit), a transparent membership process, and effective accountability mechanisms - what happens if people don't do what they're supposed to, or do what they're not supposed to? 

The third kind is what she calls "especially challenging behaviours", and it's when individuals are persistently disruptive (or worse) and refuse to engage with any of the processes that need to be in place to keep the ship on an even keel. 

Well. I love a framework, and I (mostly) really enjoyed engaging with this one. A long time ago now I learnt the phrase "governance drift". It's similar to another phrase I learnt even longer ago, which is "implementation gap". Your implementation gap is when you design a law, a policy, or a piece of legislation, but then fail to create an effective enforcement environment, so people or bodies that choose to ignore or even violate it simply can. Post-apartheid South Africa, for example, created a constitution that absolutely enshrined the rights of women and girls not to be subjected to gender-based violence. As of 2025, fifteen girls and women in South Africa die as a result of GBV every single day. It's not that the laws aren't there, it's that they are broken with impunity. How things are implemented matters. 

Your governance drift starts in a slightly different place. You can collectively agree a set of policies, as we did, and set off with a high degree of compliance with them. You might not like all of them, but you put the hours in, or you arrived into that situation, and you believe that was the best that could be done at the time, and you accept that. You roll with it. 

But that only takes you so far -- and over time those policies can become structural rather than cultural, and seen as constraining rather than enabling. Circumstances change, people change, the world around us changes. And if you can't address that, can't find a way to put more of those hours in, then gradually, people just stop adhering to things that they can't see the point of, or that they find actively harmful to the community they are living in. Not everyone feels that way, but you've collectively lost the faith in the process, so the policies remain, but they are cold and dead, not warm and living, and you drift away from them, either by omission (not doing a thing you said you would do) or commission (doing a thing you said you wouldn't do). 

That's where we've been (in my view) for a long time. And it's not the worst place to be - most of us are community minded people, we consider the impact of our actions on others and adjust them accordingly. But it's created fertile spaces for double standards, for interpersonal conflict which is actually structural, and for especially challenging behaviours that are harder than they should be to respond to. 

There have been some energy shifts over the last year or so - which I see as coming from an "all you need is love" theory of change. Instead of addressing the governance drift, or the areas of conflict, which would be hard and unpleasant, let's focus on celebrating ourselves and doing stuff together. 

It's not been unsuccessful - we've had four "community weekends" where there have been activities and conversations and meals and work parties and informal gatherings of all kinds. I left town for the first one (on which more shortly) but I've participated in and made contributions to the others. They're good. I appreciate the efforts people put in to making them happen. 

And I have some sympathy with the instincts behind the initiative, and behind many other thoughts and deeds. We deserve nice things. I actually think nice things are necessary. But they are not sufficient. If you never ever go there then you're just papering over the cracks, when you could have been rebuilding the wall. 

My theory of change involves paying attention to the root causes of our governance drift, as that's where you identify what's stuck and why, and what we can potentially do about it. To me, they feel screamingly obvious, and I'd prefer to get right into it to see if I'm right, and if I'm not, what they are, and either way, how do we address them. This could include deciding not to address them, but that would be an active choice. This is not that. But I have also learnt that most people find this approach jarring. Go softly, we say. Go slowly. And, ok. 

But what I think many of us mean, is let's not think about this, except when a little bomb goes off. And then we clear up the debris and patch up the wounds, but we don't change the guard at the bomb factory. And my take on SOIL's community conflict framework leads me to think that we're losing even the potential ability to do that, which means we'll be less able to handle the fallout from the little bombs, and our already eroded trust will erode further. Boundaries matter. It's extraordinary to me to be in a situation where we could be co-creating them, and just letting that drift away. 

The last time I wrote about this at length was 11 (eleven!!) years ago, and I went back to it before starting this, to see how much my perspective had changed, how different the vibes were, and whether this was a useful lens. 

And honestly, given where I think we currently are, it made me feel really sad, and fairly convinced that the endless appreciative inquiry approach is at best a waste of energy and at worst something that is explicitly designed to keep us divided into good and bad citizens, where good means "don't make a fuss". 

But there's something else in the mix for me now. Around that 2015 mark, after the very hot period of what is now a fairly cold war, someone said something along the lines of I'm really sick of all this silver tongued talk about fine dining. This was directed at me -- and like all the best insults, it stung. What I heard was "here I am, a simple worthy man, trying to live a simple worthy life in a simple worthy community with like minded folk, and this woman is trying to undermine everything about that with her clever weaselly words and fancy tastes." 

I examined this REALLY HARD at the time, because that wasn't what I was trying to do. But what I didn't have at that point in my life was knowledge of my neurodivergence. Specifically, that I am autistic. I didn't know much about autism at all. I didn't know how it presents differently in women. I knew almost nothing of the challenges that many many autistic people have with food. Or that my own challenges with food, like many other aspects of my autistic presentation, are deeply untypical -- which is one of the reasons my diagnosis came so late -- but no less real. I described them pretty well back in 2015, but I didn't understand why I had them, or why I would genuinely rather not eat than eat a fair proportion of what had been presented to me as inclusive food in an inclusive space and if you don't participate, well that's you being selfish, Jo. Get over yourself. 

Another thing I now know is that my use of language, my celebration of words and the joy I find in deploying them (even my need to deploy them), is also an autistic trait. It's called hyperverbalism, if it matters. Yet another facet of my autistic existence is justice hyperfocus. If I see that something isn't fair, I will work to make it fair, and if that fails I will ask a million questions about why we're ok with leaving injustice unaddressed, and if I don't get answers to those, I will create a sculpture out of fish tins, and write poems on blackboards, and eventually let another blog post escape containment even though I know lots of people would rather I didn't. 

You can still ignore me. I'm used to it. But I won't stop, because if I stop I go pop. 

And at some level -- at many levels -- I remain absolutely convinced that these are conversations we need to have. Without them, power abuses happen. The strong dominate the weak, and count on the fact that the weak won't protest. Minority voices go unheard and minority interests remain excluded. Our policies are supposed to protect us from that, and our decision making processes are supposed to ensure that those policies are not themselves exploited. 

We have a situation at the moment that isn't about food. I'm calling it Chudgate*. There's a guy (it's pretty much always a guy, right?), who lived here with his partner and their kids. He had the funds to buy a second house here as a buy to let investment. This is something that could arguably be contravention of our lease, but nobody stopped it happening. The vendors wanted shot, and there he was with the money. But then he split up with that partner, and moved away, taking the car they had been sharing with him. That was an EV, and parked in the sweetest (as in most accessible for many of us) parking spot on the street, which has a charging point. As soon as he was gone, a shared car (not an EV, we didn't have the means to fund a shared EV) took over that space. 

But then he decided he was moving back, and this involved bouncing his ex to house #2 and evicting the tenant (a low income single mother with a small child who thought she had a long term tenancy) in the process. This caused the closest thing to a how did we let this happen and can we make it stop? I have seen here, and I was briefly encouraged. It wouldn't have been easy, but we have a lease, we have articles of association, we have policies, we have processes. This guy told us he was leaving because he wasn't enjoying living in the community, and has given 0 indication that he is planning to do anything beyond occupy his house now he's back. 

Someone pointed out the driver of the Chudmobile will never see
this as Chudmobiles can literally drive over children without noticing 
Oh. Except he's arrived with an SUV. A fucking Temu Range Rover!! Which meets the needs of... HIM! And he's bounced the shared car right back out of that space, so he can HAVE IT BACK! That car has occupied the space released by the tenant he evicted, which is an accessible space which someone else was waiting patiently for. We don't have enough parking spaces to have one per house. That was an active choice: it's better for the planet and better for community (which is also better for the planet) if we share cars. But everyone's gotta play. Most of us have tried. Not this guy. He just does him. And we're letting that happen. 

That, my friends, is governance drift in action. Got enough money? Got enough balls? Got enough Teflon? Do what the fuck you want. 

I don't subscribe to this worldview. This is not why I am living here. I'm not an anarchist and I'm not a libertarian, because I've hung out around the edges of some of those spaces and haha who has the power? The same fuckers who always have - white guys with wealth. 

Of course - while I am not a white guy, I am evidently white, clearly able to represent myself (even if I am regularly misread) and I know from what people tell me that I have power of my own, even as a shortarse menopausal woman who has only recently learnt about deadlifting and facial serums. 

And as such, I think I have a degree of responsibility. I'm a clever girl. I could use that irresponsibly, but I try very hard not to. The accusations thrown at me that hurt me the most are the ones that assume I'm doing that, that I'm using my facility with words to engender an outcome that is focused on me. And - honestly - that would be much easier (practically) than what I am actually trying to do, which is to get us to engage in restating / redefining how we live here and why. 

I know there are people who don't trust me. It's annoying, but I accept that they have their reasons. They are generally the same people I don't trust, and I know that I have my reasons. 

So I try to engage with the initiatives that have community support. On the meals front, we've been in a six month "experimental period" for about three years now. The experimental period had its own rules but it also passively expired. And that, for me, is where it got juicy. 

One of the activities that happened in the official experimental period was a policy MOT. We've done policy MOTs a few times - in an environment with well-functioning governance it would be a healthy process: look at the existing meals policy, assess if it's doing its job, identify what further action (if any) is needed. Keep the shizzle to the minimum necessary.

Actual footage of our Meals Policy as it went through its MOT.
(I don't take credit for this joke but it's too good not to share.)
 
















Yeah, we MOT'd the Food Policy. It failed. 

Did we engage with the details? Or did we run around flapping our arms and then have a lie down? (Clue: it wasn't the first one). 

So there I was. This policy isn't in effect. We don't think it's fit for purpose. But we don't collectively have the capability / capacity / courage to address it. What happens now? 

I did draw a distinction between omission and commission. I can defend it, but I acknowledge it. I organised something that (in a scientifically very minor and if you weren't paying attention, which most people aren't, undetectable) way was not permitted. I did it fairly out loud, in the sense that I offered it as an invitation to anyone who would like to be there, as part of a birthday celebration for my beloved. 

I knew I was crossing a line - but I knew that multiple other lines have been crossed, in multiple other ways. We can't live in limbo forever, was my logic. This is a very low impact test case, was my logic. If there's going to be pushback, I'll at least get some intel on the reasons behind it, and that will be helpful, because I really don't understand why there should be, was my logic. 

Short version: there was pushback. Only from one person, but it went via three different teams and my beloved himself. It's hard to explain why I held out on every one of those fronts. But I did. And it happened, and in its way it was a magical evening. Not for that person, and I feel bad about that. I wrote to them and said so, and that I was open to dialogue, and that still holds. 

Our most "powerful" team - our directors - were one of the teams involved and when they made a statement (at the request of that one person), I challenged their decision to do that. My challenge was about 2500 words long, but was basically - why does this particular issue have weight for you? Was it because someone raised it at all? Should we all raise all of our issues to you? Is it about the person making the challenge? Is it to do with the nature of the challenge? Do we care more about birthday fish soup than SUVs and evictions? 

Our directors have, entirely reasonably, tried to avoid being police - but here they were doing that. I felt policed. They pulled back from it, in writing so I feel better, but you know what, I still felt policed. I'm working on it, but essentially I am as much a member of this community as anyone else or you have to tell me that I'm not. That's what caused me to leave town for the first community weekend. I couldn't be there and feel acceptable, or accepted. So we went to Manchester, stayed in a hotel, had some absolutely fantastic Thai food, saw some incredible art, and generally shook shook shook it off. 

It's not all of my neighbours who are like this, obviously. In fact it's hardly any. I think they have more power than they should, but they may well think the same about me. One of the reasons I did the conflict course was because I do recognise that for some people I'm part of the problem. You probably could actually pay me to go away, but it would need to be a sum commensurate with the profit made by people who bought their houses at a massive discount and sold them on at market rate. I might even put some of that sum towards funding a house that can be rented at an affordable rate to people who actually want to live here (there would be one condition: no shaming people for their food choices). 

Because they *are* choices. And if you know me at all, you know I make my choices carefully, and I reassess them regularly. If I don't agree with you, it doesn't mean I haven't thought about it, and it doesn't mean I don't care about the world and everything in it. 

Turns out one person's silver-tongued fine dining is another person's authentic expression in a world that is built for chuds. We may have had more in common than we thought, but I think that ship has sailed. 

joella

* My sensitivity reader questioned my use of "chud" as he didn't know what it meant. I said it was a non sweary alternative to a word of the same length beginning with the same letter, but the Merriam-Webster definition is here. 

Wednesday, May 21, 2025

O, from this time forth, my thoughts be bloody, or be nothing worth!

sometimes I feel very seen

We went to see Hamlet Hail to the Thief last weekend, and it was thrilling. I've never really been one for Shakespeare -- I can see there are stories in there that embody the "nothing new under the sun" message, and I can also see how valuable it is to have those stories, but, mostly, yawn. Too many words, too much leaping around, too much declaiming. I've seen a few of the more famous plays, live and on film, and I studied a few more at school, but they just don't reach me. And it's not that I'm unreachable, is my logic, so it's not on me. If I ever got to go on Desert Island Discs, I'd ask for the complete works of Ursula Le Guin instead. 

But HHttT (as no one called it) was immense. I have seen the full Hamlet twice, so I know how many of the lines are part of the culture, and this seemed to concentrate around the highlights and make them make sense. With additional bonuses of a) incredible physical energy (there was quite a lot of dance) and b) a killer soundtrack (there is little Radiohead I don't love). I laughed out loud several times, and had to look through my fingers several more, and this is rare for me at plays. To be fair I don't go to that many -- the first one I went to that wasn't a school or university performance I tried to leave at the interval because I thought it was finished, so I guess I'm just not much of a thesp. 

I've been thinking about what reached me, and why, and what other recent things have reached me, and why, in the light of my current exploration of the snakes and the ladders. Some of the other recent things include a Richard Dawson gig which I only bought a ticket for on the night, a visit to Levens Hall, a bowl of Bun Bo La Lot at Salvation in Noodles in Finsbury Park, a Lego Serious Play workshop for some of my colleagues that I made happen (and got to attend), a wine-soaked conversation punctuated with birdsong on someone else's riverfront terrace, and a walk with my beloved across the Lots in Silverdale as the sun was setting over Morecambe Bay.

I live, and have generally lived, a life suffused with things that reach me. I want to be reached, and I want to be part of things that reach other people. I think that's important, when I talk about the snakes and the ladders. It really fucking matters to me, the reaching. And I mean reach (and this will come up again later, kids) with good intent. That can mean challenging. That should sometimes mean challenging. Of me, as I am reached, and of others, if I reach them. Or it can mean joy. Or comfort. But if it makes you think, that doesn't make it bad. In my view. If it makes you a little uncomfortable, ditto. 

This musing is prompted, or maybe accelerated, by the fact that here in Ecoville there is a new Common House Floor Cleaning Rota and a new six month rota for the regular cleaning jobs, and as usual (since forever) my name is not on the former and as usual (since 2020) my name is not on the latter. I really thought this time round I'd feel like I could sign up for a job like some of the jobs I used to do -- I have never been able to approach the kitchen but I used to change towels, clean windowsills and communal toilets, tidy shelves, look after the washing machines. 

I'm not the only person whose name doesn't appear on those rotas (I can guess at some other people's reasons, but I'm not going to speculate on them here) and this does cause issues. If it was literally just me, the community impact would not be that great, everything would get done, some people would think less of me, I would accept that, in the sense that getting me back on the rota would not really be worth any community effort. Just leave her be, she's a weird one. 

I'd still be sad, because I am reachable, and my conscience combined with my female socialisation means that I feel bad not being on the rota, but not as bad as being on the rota would make me feel.* Lots of people not being on the rota makes me feel a bit worse, because I think it's hard on the people who do their bit, but then maybe they like it that way, I don't know. 

Because we don't talk about it. Not really. 

But I can. As I said in the trailer, I've been working some of this through in the light of my (very late! go patriarchy! thanks menopause!) autism diagnosis. If you are unfamiliar with some of the dimensions of autistic thought and communication, there's a reasonable summary here. I would say my need for clarity is intense, and couples with my strong justice sensitivity  And one of the biggest WTF elements for me these last couple of years has been the slowly then all at once realisation that for a lot of people, clarity and justice are not nearly as important as everyone being nice to the people who expect people to be nice to them** (I can't even work out how you know who those people are, except by counting my bruises when I hit a nerve that was supposed to be clearly marked "do not discuss"). 

One way this manifests is that I experience fudging as oppression. I therefore want to fight it, and if I can't express myself in words out loud, I'll find another way to do it. Honestly, it's a relief to know this. 

Sometimes that's in t-shirts: the photo above was taken by a neighbour (also a friend and confidante) at one of our General Meetings (GMs). For many years I barely missed a GM: I believed they were where we made decisions, and I believed (in the words of President Bartlet) that decisions are made by the people who show up. You have to be in the room, I thought, because that is the way to ensure that your views are represented. So I made a lot of effort to be in the room. Before we moved in, that represented hundreds of pounds of effort a month, as we had to travel here from Oxford. After, it was more emotional effort: some meetings sent me to bed for the rest of the day. 

I don't believe that anymore, not fundamentally. My loss of faith in consensus decision making is a whole separate post, and a whole separate sadness, as for a long time I was like well, fuck, this is how everyone should do stuff. You don't get 52:48 votes changing the course of history if you're working with consensus -- you have to keep going till you find something that everyone can live with. But it really doesn't work if you are conflict averse, and it really doesn't work if you won't examine your power dynamics. 

More on that another time, but basically I got burnt bad when my intent was good, and I don't react well when that happens. It feels in my head like a portcullis slams down. I can still see the place that I used to be able to hang out, but I can't get there anymore, so I have to adapt. Annoyingly, it's a surprise every time. You'd think I'd learn, but I'm an earnest little bean. 

Adapting often takes the form of withdrawal, but I still need to find a way to express myself -- I need the pressure release valve if I am not to explode with the injustice of everything. This is, I think, what my Ecoville blog posts have often been about. And sometimes I can get myself back in the room, which is how I found myself in a General Meeting where we were ostensibly talking about conflict. I have stuff to say about this, I thought. Finally! 

I am pretty sure my T-shirt choice that day was deliberate, but it was not conscious. I have a bunch of T-shirts that are (arguably) provocative. At least two of them have fish on them, and one just has the word UNAPOLOGETIC. I bought this green one at a Cypress Hill gig, and really for the front of it (which says Cypress Hill in the Rizla font) than for the back. It's a cracking song though. 

But anyway, there I was, wearing it, and there was the session about conflict, and there was the list of ways you might approach it and we were invited to decide which we identified with and I was standing there looking at it, thinking "where's I protest?". My approach to conflict is not on this list! But, as captured so beautifully by E, I was literally wearing it on my body. 

🎵 It's a sin to kill a man / But I'll be damned if I don't take a stand 🎵

(Note: I would almost certainly not actually kill anyone) 

We had a genteel conflict avoidant conversation about conflict, I'm not sure whose needs were satisfied, but mine weren't. A straw poll indicated that a majority of the people who had got themselves into the room that day saw "conflict" as something we should pay attention to. That was 10 months ago, and I see absolutely fucking zero evidence that we have. 

Jo, I hear myself saying, you could take a lead on this! Yeah, I hear myself saying, look what happened last time you tried taking a lead on this! And the time before. And the time all you did was try and support the other person who was trying to take a lead on this. Et fucking cetera. 

We could say that we only value people who Don't Make A Fuss, Clean The Floors, and are happy to Go Along With Not Upsetting A Specific Group Of People***. We could say that, and I sort of wish that we would, it would be at least helpful for those of us who appreciate clarity. Those of us who have been here for a while once received a printout in our mailboxes about the value of duct tape (over your mouth) and work gloves for new community members****. While this is almost the dictionary definition of passive aggression, when you are actually new it's not terrible advice, especially if you are a white cishet man. 

But if we're talking about the "living phase" as opposed to the "build phase" -- we were literally here second. We did some really fucking hard yards. And even for a lot of the softies who arrived after we had a postcode and a car club and wi-fi and a laundry, they were still basically in at the beginning. How many years till you're allowed to have views? Five? 10? 

To round this post off (I'm trying to keep them at a digestible length) I have learnt that where I live I am seen as difficult and challenging and upsetting, and at times not acceptable. And I felt bad about that for quite a while. I don't try to be those things, except occasionally when I have reached my tolerance limits, or drunk a whole bottle of red (I often go from warm fuzzy to cold fury somewhere between glasses three and four, but this is why I left the community WhatsApp). 

You should hear my inside voice. Honestly, I work hard in a world full of dissembling and fudge, and only occasionally go pop, though fair to say that when I do, we're cleaning it off the walls for years (well, I'm not, as I'm not on the rota). 

As one of my neighbours (who literally rubs my words out every time I write them on a blackboard) bellowed at me once, maybe I should... MOVE OUT!! And I've thought about it. But I love my house, and a lot of my other neighbours are awesome. When virtue signalling was more overt here than it is currently, someone declaimed that we ran the risk of just being a bunch of middle class people living in nice houses by a river. Maybe that's what I am, me and my refusal to clean the floor, but you know, I tried. Another one of them once said "We've (that magic we again) tried very hard to meet your needs". You haven't though, you've never even asked me what they are. 

But I can write about them here, and maybe that will help. Or not, but it will help me, and that's better than a slap in the face with a wet fish. 

joella

*There's always the option of being on the rota but not doing the thing -- I am unable to do this one, I find unilateral active transgression almost impossible. 
**These are usually the power holders in a situation (though not all power holders etc). This can cover unconscious entitlement, extreme wealth, cult leadership, and many things in between. 
*** I have a list of the people who refused to agree the agenda of a meeting that contained some proposals they did not even want to hear. This was an organised exercise and there were 13 of them. Maybe half of them were foot soldiers recruited by the officer class. I'm cool with them, it's hard to say no to that kind of thing if you are asked to pick a team. The officers, I watch. When one of them leaves, I have a silent disco. 
**** This was an excerpt from Finding Community by Diana Leafe Christian. Who visited here once. Lunch was vegan, but my beloved cooked her an omelette. 

Thursday, May 09, 2024

Three big things, two gold rings, one resolution.

The ingenues in their early days. The lobster, scarf, wall hanging and cardigan are still with us. The gin, we drank. 
People say that bad news comes in threes. I think a lot of things come in threes, but maybe that's because I strongly prefer odd numbers (especially 3, 7, 19 and 23, which are also all prime numbers) and three is the first odd number that, to my mind, counts as a proper number. 

Here are three things that have been various shades of news to me over the last couple of years, about which I have and have had varying degrees of control. Not all bad, but all big. 

1. In 2018, M was diagnosed with bladder cancer, via the traditional blood-in-piss route. Do not ignore blood in your piss, do not. I can remember where I was when he called me to tell me about the blood, and I remember that I knew that the little squirt of (I'm guessing) adrenaline that I experienced, in the Northern Quarter of Manchester while preparing to buy fancy glasses to appear more employable as I'd recently been made redundant as a result of the sexual abuse and exploitation scandal at NGO X, was significant. And I wasn't wrong. He had low stage, high grade cancer. The tumour was removed, and then he was treated in the recommended manner, though the treatment -- BCG into the bladder -- had to be stopped early, as he had extreme side effects. He had regular follow ups - first every three months, then every six, all through the pandemic. It almost went away, just a thing he did. But then, after nearly five years, it came back. Cancer that has come back is a different beast. 

He's doing ok. But that was the first big thing. 

2. We got together in 1998, so 2023 marked 25 years of whatever this is. We'd talked vaguely about celebrating, having a party... we never had a party when we left Oxford in 2012, we meant to, but we had a lot on. We assumed we'd return and do it, but then my mum got ill and everything tilted around. And then we were trying to settle into our new life up north. There were parties, but they weren't our parties, not like that. We should, you know, we kept saying, but life just kept getting harder (see above, and also the Ecoville Food Wars / Brexit / Trump / losing my job). I did organise a big thing for my 50th, and it was a joy, but it was also in early 2020, and we all know what happened after that. My dad barely made it through, many, many other people's loved ones did not, the government got worse, everything got more expensive, the climate slid further into chaos, we all got, as Pink Floyd say shorter of breath and one day closer to death. 

A school friend of mine -- not a close one, but we were Facebook friends and chatted occasionally -- died suddenly in June 2022. Her funeral was in Blackpool on a bright sunny day. On the way there we had to detour because of a fatal road accident. We ran into the church behind the coffin. Afterwards, I gave her mum a card that contained messages from all of the school friends I am still in touch with, as I was the only one who could make it to the service. It was every kind of sad. After we left, we drove to the Promenade and went to look at the function rooms at the Imperial Hotel. By the time we got home, I'd decided we were getting civilly partnered in the Washington Suite, which is basically a Victorian ballroom that has Seen Some Parties. It took M a little longer to come around to the idea of a major life event happening in Blackpool (he would have preferred a mystical woodland glade), but I have my ways. 

And we did. We invited somewhere around 100 of our favourite people and we layered our party onto the decades of parties and it was great. We had our rings made by a jewellery designer called Myia Bonner, and they are recycled rose and yellow gold, and I love them. There was food and drink and poetry and vows and live music and dancing and speeches and laughing and all around a lot of love in the room. I learnt that fake flowers and real candles do not mix, but I learnt a lot more about the joy of celebrating things while you can. 

3. I've written about menopausing before. That's not new. But over the years it's been happening to me I've become increasingly aware of all of my senses, and not in a good way. Certain sounds especially, but also textures, tastes, smells and lighting that used to be mildly irritating have become almost overwhelming. I have found myself rocking, with my hands over my ears. I have found myself curled up in a ball under the duvet in the middle of the day. I have found myself unable to eat something too sweet, or too fatty, or too bready, or too anything, really. When M asks me what I want for dinner, I have become incredibly precise. I have given up underwired bras, most of my socks, anything that is remotely itchy. And occasionally, I have found myself shutting down. I've always had what I call Full Pyjama Days, but these are a bit different. I simply can't do anything for a while. 

At the same time, I'm still attracting the kind of feedback that makes me want to burn things to the ground. People read me as rude when I'm trying to be clear. Or assume I haven't done my research (I have almost always done my research) and tell me stuff that I have known for literally decades, that is so integral to my thinking that I don't bother to mention it. "I think you might have misunderstood..." is something I hear a lot, especially from men. No. I understand, I just think you're categorically wrong.

Long story short, I went to the GP. She looked tired. I felt bad, I wasn't ill. I think I might be autistic, I said. Well, she said, what makes you think that? I gave her the story. Honestly, she said, I'm surprised this is only coming up for you now, but I don't know very much about it. So we'll do a referral. 

I was grateful -- GPs can be amazing, but they can also not take you seriously. I've been very lucky, on the whole, but my Significant Ex had abdominal pain dismissed in his mid 20s and ended up with an explosive gall bladder. And he's posh as all get out. 

Anyway, the first step was a one page screening assessment that they sent me in the post. I read it and it *had the answers* - it was actually designed to be asked by a practitioner. But I did it myself without cheating, and then I asked M how he would rate me. He only disagreed with me on one statement, which was basically "I collect lots of weird stuff" yes/no. But the stuff I collect isn't weird, I protested, and he rolled his eyes and gestured at the train tickets, the basket of wine corks, the Encona bottles, the drawer of veg box string and the tower of tuna cans. 

You've got a piano!! I said. 

But kids, it doesn't work like that. I passed/failed the assessment (depending on your perspective) and then I waited for my appointment with a psychologist. This took about nine months, which I gather is pretty good. When they got in touch, they said they wanted to speak with a parent. But I'm 53, I said. It's important to know what you were like as a child, they said. 

So I did ask my dad a few questions (he wasn't well at the time and he was nearly 80 ffs) and it was actually hilarious. "Well, you could read and write before you went to school, we only really sent you because we thought it might help you socialise. But it didn't." 

My limited memories of primary school really are "what is the point of this, I could be reading books", except for the fact that the food was excellent. God love my mother, but she was not a great cook, and those dinner ladies and their chips, and their carrot and swede mash, and their beefy sausages, and their chocolate sponge and peppermint custard: they made it all worthwhile. Chicken supreme, Manchester tart, mince crumble, pickled red cabbage, I loved almost everything that came out of that kitchen (except the roast parsnips). I also loved the parquet floor and the curtains in the gym / assembly hall / dining room, which were *exquisitely* 1970s, but I hated pretty much all the rest of it. A tiny example: I was cast as Snow White in the school play because I had the correct colouring, but I was so terrible an actor that by the time it was staged I only had two words left (a yes and a no), which I delivered with such vehemence the audience laughed, and it wasn't supposed to be funny. 

So with hindsight, maybe the signs were there, but no one was looking. 

But in 2023, they were slightly better equipped, and I guess I was doing the looking myself. And it turns out that yes, I am, by current diagnostic criteria, an autistic person. And with only a modicum of deeper research, it transpires that autistic girls with "low support needs" (who can essentially function independently if idiosyncratically) just pass as oddballs for years and figure that everyone else is better at normal life than they are (but don't care that much) until BAM!! hello menopause! The gift that keeps on giving! 

I'm glad I sought a diagnosis and I'm glad I've got one. A whoooole lot of things make more sense now. It's weird to see yourself as someone with a disorder, or even a disability, especially if you've secretly thought it's almost everyone else who's batshit. But then you look at the things you have tried and failed at over and over again, and the assumptions people have made, and the questions no one has ever asked, and the endless fucking battle to be seen, heard and taken seriously even as a middle class white woman. 

And it's kinda heartbreaking: not so much for myself now -- knowledge is power, mofos -- but for my younger self. She was so comprehensively thwarted, so many times, for reasons she did not understand. She was fucked over by people she trusted because she took things at face value. She was so often playing a different game, and didn't know the rules of everyone else's. 

But she's working on that, the grief. It's a thing, apparently. She's getting some help with that. She's going to be fine. 

All of this to say, though, I arrived in 2024 with a new prescription in my life glasses, man. There are some things that I started to write but stopped because I thought well... does this still hold? Am I still making sense? Where I'm at four months in is that I think I've never made more sense. To myself, anyway. And this is where I get to say my stuff, so. 

That's the resolution: to speak my mind. I always kind of have, but now I think it's even more important. 

joella