The Week That Was – A. L. Lester

The Week that Was: Mattresses and activism

This week, we bought a new mattress. My back’s been increasingly creasing me and we’ve progressed through putting a board under the mattress, adding a memory foam mattress topper and then, finally, adding a big duck-feather thing on top of that. Making the bed is a bit like an out-take from The Princess and the Pea. (Yes, this is a genuine picture of me and Mr AL, in our night attire. Enter our bedroom at your peril.)

The whole process has been massively stressful, largely because it’s such a first world problem. Firstly there’s the cost. And secondly there’s the number of choices. And thirdly there’s my sneaking and increasingly unpleasant feeling that the world is going to hell in a handbasket and I should care more about the fact other people don’t even have safe spaces to lie down rather than the number of poxy springs I can afford to sleep on.

Yes, this is a post about guilt. But it’s also a post about nurturing your spoons. This is a bit of a stupid example–I could simply donate the cost of a mattress to an organisation helping the homeless and stop flailing about on the internet about it. It’s an analogy that I’ve been pondering though…how much is enough? In a society so unequal, how much is enough? Do I have to put up with a bad back to enable other people to have somewhere safe? Or can I make myself comfortable and help others too? It’s a really simplistic analogy, but I guess I’ve needed simplistic this week, because it’s what’s finally straightened my head out.

I’ve been really upset these last few weeks by the cess pit that’s the public discourse over trans rights in the UK. I’m saddened and upset by the level of hatred and silencing directed at trans people and a few weeks ago I decided I’d try and be a bit more active amplifying trans voices, and share things people can do to help. This has involved following accounts that share trans news. And even in this short amount of time, it’s devastated me.

I don’t know how these people manage it. There’s so much bile directed at them. I just pop onto their twitter timelines, check out the day’s events and see if there’s anything practical I can do to help…sign and share something, amplify news about a protest, that sort of stuff. I belong to a couple of blocklists and often the blocked responses scroll down and down and down the page. But then I come across a few people I haven’t blocked and the responses are vile; so I block them too. They are often accounts with followers below a couple of dozen, some only one or two.

After only a few weeks I feel worn away, exhausted by the horribleness of it all. I am non-binary. I present as a short, round, middle-aged straight person, married with children; and as such, my level of privilege is huge. I don’t get spat on in the street, or threatened at school, or shouted at in public bathrooms. Even watching the courage of these people with high public profiles from my safe position behind a keyboard I am awed at their strength. It’s the least I can do to keep trying to amplify their voices.

But…I can’t do it to the exclusion of the rest of my life…the looking after the kids, all the adulting I have to do on the day to day. And that includes the caring for myself. That’s the balance that’s so hard to get. And I guess it loops back to the stupid first-world thing about the mattress…it’s okay to look after myself and it’s okay to not feel guilty about that. As we travel along, our capacity to hold the light for ourselves and for others changes, whatever activism we participate in.

Some days you can’t even hold the light for yourself. Some days you can hold it for the village. It’s really important to a) remember that and not beat yourself up about it…you’re not failing if you can’t do it, you’re doing self-care. And b) you can’t do everything. Even on a good day, you can’t do everything. You’re in it for the long haul and whatever activism you’re doing, that’s enough. One step at a time and hopefully we can change the world.

Christine Burns has a curated list of books about the trans experience here.
Here are some resources for trans people experiencing homelessness.

#TheWeekThatWas

I’ve ground to a halt. Those of you who read my newsletter will have seen on Tuesday that Morris the Dachsund was very unwell. He injured his back a fortnight ago, we think jumping off the compost heap after a rabbit or a rat. He was improving, with rest. And then on Monday, he jumped off the sofa rather than using his steps and he damaged his back so severely he paralysed his hind legs.

We took the decision to have him put to sleep on Wednesday morning. He was four.

Also on Wednesday, Littlest had an appointment about her tendon-transfer. We have been talking about this for two years now…she needs it to hopefully correct the posture of her feet and get her standing again. COVID has meant everything has been on pause, but now we’re looking at the procedure happening in the spring. It involves a general anaesthetic, which is tricky for her, given her condition. However, although this is so-say ‘elective’ surgery, if it’s not done and she doesn’t resume standing transfers etc, it means she’s more likely to develop lung problems and scoliosis later on. So ‘elective’ is a matter of gradient, really.

And then, finally, for reasons, Talking Child has been in trouble at school and been excluded for a day. The reasons are completely reasonable and Mr AL and I are mortified and furious. We have to do the Parent Walk of Shame on Monday morning to discuss what happens next with her head of year. We’ll obviously also be addressing the atmosphere of identity-based harassment she’s dealing with as well–school are tackling it and we’re all working as a team; so in a way it’s positive to have this opportunity to talk things through. TC is mortified she’s let herself down and is currently cracking on with the work school have assigned her. She’s grounded for a month.

I’m done with this week. Just, completely and utterly done. I was going to write a Halloween short story and have it out before the end of the month…in time for Halloween in fact, quelle surprise. However, that’s gone by the board and in between crying about the dog, managing Littlest’s birthday yesterday–she was thirteen and god knows, we never thought she’d get this far when she was born with pneumonia–managing hospital appointment and vaccination bookings and dealing with Talking Child’s misdemeanours I’m not doing author-things at all.

That’s it. That’s where I am.

#TheWeekThatWas

If you follow me on social media, you might have noticed that I’ve been quieter than usual over the last couple of weeks. I’ve been a bit poorly with lots of seizures, the kids have required back-to-school organising, Mr AL has been a bit peaked and so has my Mama.

I’m scheduling this post in advance on the Saturday before you’ll read it, because as of Monday, Mr AL and I will hopefully have left the kids and the zoo with our brilliant carer and run away together for a whole five nights break. We’ve picked a pub on the coast in Devon which has a HUGE terrace overlooking the sea, my thinking being that we can sit out there for meals even if it’s raining and avoid other people.

We’ve already had one close-contact covid scare with a child on Littlest’s school bus testing positive at the beginning of last week. Littlest has had a proper PCR, which hasn’t yet come back–good news as apparently they prioritise contacting positive cases–and we are all getting negative lateral flow tests daily. No symptoms at all, so big yay! I can only hope the other families are doing the same thing. A school of clinically vulnerable kids is not the place to muck about with this sort of thing. Today is not the day and I am not the person, as they say.

Talking Child has had a rubbish time nearly every single day this past week with identity-based harassment kicking off at breaktimes. We’d really hoped it would be old news this term, but apparently not. School are on it, but it’s like whack-a-mole, the minute one gets the mandatory in-school exclusion another one pops us. TC is coping very well, but it’s really unpleasant to have to deal with on a day to day basis and it’s a big mental health drain.

All in all, here at The Towers we’re a bit flat. I’ve been sticking rigidly to my to-do list in order to try and keep some sort of routine going, because I feel as if once I start to let one or two things slide, the whole lot will go. I’m really hoping that by the time this post is published you’ll have seen some cheery pics on my various social media feeds and I’ll be able to write a brighter post telling you all about the lovely things we got up to while we were away!

#TheWeekThatWas

The last couple of weeks have been hard here at Lester Towers. It’s the school holidays…cruising on down to the end of week two out of seven now.

Littlest needs constant entertainment otherwise she starts driving her wheelchair around the house throwing things on the floor. And by ‘constant’ I mean you can’t go and put the kettle on. Talking Child has suddenly morphed into a teenager. I’m just stunned by the way they’ve flowered. They went back into school after two years home education last September. Watching them blossom has been wonderful, but also terrifying. I am now living with a highly strung bundle of judgemental anxiety I assume will relax a bit as time goes on and they achieve adulthood. There’s a lot of boundary pushing and on occasion I regret it’s no longer socially acceptable to sign your child up to a career in the navy at age twelve.

To keep us all on point however, I have designated Tuesdays Mandatory Fun Days. We have something planned every week–zoo, theatre, animal sanctuary etc–and I have arranged for Littlest’s carer to help get her ready to go out on those days. And we are piling into the car and having Mandatory Fun. Everyone has to be cheerful and if they’re not they will face my wrath.

So far it’s been two weeks, the zoo and the theatre, and it’s worked. Yesterday we had to change Littlest down to her skin and shower her, MrAL and I and bleach two wheelchairs in the fifteen minutes before we left. It was exhausting and if you’re a carer you’ll find it hilarious but if you’re not, you’ll be baffled. Something always happens to knock us off our stride.

The other thing I’ve been wrestling with is getting the children a vaccine. Government policy in the UK now says that Clinically Extremely Vulnerable children age twelve and over should be vaccinated. And so should children over twelve living with people who are CEV. So both children come into that category. Quite a few of Littlest’s peers around the country have already been vaccinated, some on the advice of clinicians before the government policy change. However in our area, it isn’t happening. I have been pushing formally with emails since mid June and we now haw a clinician’s letter saying she should have the vaccine. But GPs are reluctant to administer it because of liability issues, the hospital won’t do it because it’s a public health issue and the local oversight board keep fobbing me off by telling me she’s on the list. Which is great. But…not actually a vaccine. In frustration I have gone to the media and we had a regional TV chap come round yesterday and interview us about it. I desperately resent having to do it–it’s a waste of time and it shouldn’t be necessary. I’m also very twitchy about the media as a whole–the possiblity of us losing control of the narrative is there and scares me. I just want what’s best for my kids and I’ve been backed into a corner…I’ve explored literally every other avenue over the last few months and this is where we’ve ended up.

Anyway. That’s the week that was at Lester Towers. Tomorrow we go on a family seaside holiday donated by a holiday park associated with the children’s hospice and we are all looking forward to a few days off.

#TheWeekThatWas: don’t punch down

It only occurred to me a few weeks ago that Gwyn in Taking Flight is a bit out of the ordinary, because he’s trans. And some people still find that edgy, or unusual or something to be looked down on.

And this post is to say, I am so sick of that. Of all of it. I’m sick of it from the wider world and I’m sick of it on a smaller, punching-down scale from within the LGBTQIA+ community.

I came across a post on a facebook group the other day where someone was bemoaning all these new genders and sexualities people can identify with. It really, really upset me. It was from someone within the community, who I would therefore hope would have know better. How dare that person imply that identifying as an even more marginalised identity than their own was somehow unacceptable?

We’ve always been here. The fact that there are words now when there weren’t before doesn’t mean we’re new.

Homosexual can only be traced back to 1880. Lesbian has an earlier origin but was only used commonly as a noun to describe same-sex attracted women from about then as well. Transgender dates from the early seventies. These are all labels that are now in common use and have a common cultural meaning to most of us. Labels are helpful for our understanding of ourselves and our understanding of those around us. They’re not cast-iron boxes we’re locked in, they’re a starting point for dialogue and exploration.

Just because you don’t understand the label doesn’t make it any less real.

That goes for those people out there who don’t understand how people can be lesbian, gay or trans, as well as those within the community who can’t understand how one can be non-binary, or bi, or pan, or demi, or use neo-pronouns, or identify however one bloody well wants to.

Don’t punch down, basically. I’m sick of it. I’m sick of living in a racist, ableist, transphobic, discriminatory-on-all-levels society where it’s okay to say these things. I’m sick at myself for not calling this person on their comment. I feel stupid for writing a story about someone very marginalised and not realising what I was doing because to me, being trans is just as normal as not being trans. About the first four iterations of the blurb didn’t mention it, for fuck’s sake! And then I thought… Oh! that might be something readers might like to know about! How stupid is that? There’s a major drama in there, where a prospective lover discovers he’s trans…and it initially didn’t occur to me to put that in the blurb.

Was that because being outed is such an everyday worry to a load of people I know that it was another normal thing for me? Probably. Who knows?

I’m so tired of all of it. Everything is a fight, a fight to force people to be kind. And it shouldn’t be.