On plastic-free July

Posted by kaberett

Plastic-free July: this is a thing that's happening in Witney, close to the birthplace of Lashings.

It's a nice - even laudable - idea in principle, and I'd love to know if you're engaging (and how you're getting on with it) - but unfortunately as an idea it is also fundamentally inaccessible.

I take 14 pills every day as maintenance. That number goes up on bad days (whether I'm adding in extra paracetamol or codeine or diazepam makes relatively little difference). I haven't even been able to get vegetarian antibiotics: think, for a moment, about how every single one of those tablets comes in plastic bottles or plastic blister packs, and how if I stop taking them I become non-functional within hours.

Then there's the fact that I'm currently without DLA. I shop at the co-op and my local corner shops as much as possible, but making food accessible - making sure I eat - is impossible without plastic. This is, of course, absolutely not true for everyone: but it's simply not something I can find the energy for without serious impact on my ability to do my daily healthwork, the bare minimum of self-care, and the day job that lets me buy food at all.

I'm vegetarian. I use public transport. And I use a power-assisted wheelchair and I work in clean labs that consume vast amounts of energy and produce significant quantities of plastic waste - I cannot do my job without personal protective equipment that always consists of one pair of nitrile gloves and often involves double-gloving, with vinyls over my nitriles. And sure, there is absolutely no sense in which my job is either necessary or useful - except that it seems to be what it takes to enable me to keep doing activism.

I don't know how to balance these trade-offs, and every single time something like this comes up as a campaign I just... I really just want to vanish. I am so, so glad that it is something some people are able and willing to do. I just wish I didn't feel so damn guilty that I can't. By all means, give up your luxuries for ethical reasons: that can be an awesome thing to do -- but be aware that for other people, they may not be luxuries, and that you don't get to make that call for anybody else.

The author is dead: on boycotting creations because of their creators

Posted by kaberett

Here is my premise: I exist.

Over the past few months, there has been ongoing discussion of Orson Scott Card, his vile views on queer people and equal marriage, and the upcoming release of the film adaptation of Ender's Game. Over and over again - as in the most recent such article I've stumbled upon, by John Scalzi - people say:

Personally speaking, I have a pretty high tolerance for artists and creators being obnoxious/offensive/flawed/assholes/otherwise seriously imperfect. This is partly because I believe art is a highly composed, refined, edited and intentional end result of a process that takes place in a mind which can be almost anything. The only thing creators fundamentally have in common is the ability to create, and to shape their creations to speak to others.

[...]

So, yeah, I can put up with a lot when it comes to creators. It’s not usually  the art’s fault the brain it came out of is directly connected to an asshole.

To be clear, in fact I think Scalzi is generally competent, and I've deliberately pulled out the most unpleasant part of the article: but it's representative of a broader idea, the idea that a creator's reprehensible views don't affect the art they create.

They do.

It is one thing for me to consume media that doesn't contain queer people, trans people, just because we've been forgotten and overlooked.

It is quite another to consume media from which we have been actively erased.

My boycott isn't about material created by an author who holds irrelevant views. It's about my unwillingness to give money to people who deliberately erase me as an active political position.

I. Exist.

This is my real name. This is real.

Posted by kaberett


As I said recently: hello, my name's kaberett.

And that is absolutely true.

kaberett is not my wallet name - the name in my passport, on my Prescription Pre-payment Certificate, on my various institutional ID cards - but it is no less real for that. I am the only person using "kaberett" as a name; search the Internet and you'll get me, and a bunch of German-speakers using non-standard spellings.

My wallet name isn't the name under which I perform; it's not the name under which I write; it's not the name under which I have formed countless close friendships; it's not the name under which I provide sex education and health advice; but: it is no less real for that. There are two other people with my wallet name living in my area (one has a private pilot's licence; one spends a lot of time on student theatre), and I have at least one relative who (superficially) shares it.

Both names are real. Both names are equally real.

Both names are chosen.

Neither is the name I was given at birth.

I chose "kaberett" before I had settled on "Alex"; I decided on "Alex" because "kaberett" felt right.

Both names are patchwork: of who I am; of who I was; of who I hope to be. They started out too large: I echoed inside them and looked over my shoulder, unable to tell who was calling me. And then: I grew into my names, settled them on my shoulders like a coat, and I got out my scissors and my needles and my thread and I took them in where they were still too large; added in another stripe - another layer of nuance - where they constricted.

And I have worked for these names - for these identities - and they are consistent, solid, whole. I refuse to do either of them a disservice by relegating them to the status of "pseudonym" or "fake"; I refuse to countenance the question "Ah, but what is your real name?" - as if I could, should, have only one; as if my name should not be context-dependent; as if the name chosen for me by people who didn't yet know me is more real than my names.

---

We are fond of these distinctions, though: between "real life" and "online", as though they can be meaningfully separated; as though through the mediation of technology our actions become fantasy, our selves fantastical. Yes, online we can fly - but the communities we build are no less valid for that.

So then, predictably: we go the other way: with "meatspace", for example, a graphic and unpleasant image. And, yes, for some of us - and I do here include myself - our bodies make unpleasant roommates; and yet - the mind is not purer than the flesh. Embodiment neither corrupts nor tempts me.

---

And so, in the end, to neutrality: my real name is what I say it is. My real life is what I say it is.

I am here, and I am real - and so are you. So are we all.

... and why I'm furious about welfare

Posted by kaberett


Today I'm going to tell you a story.

It's not about me, for once: yes, I receive Disability Living Allowance, and yes, I receive Housing Benefit. Filling out the DLA form was one of the most misery-inducing and demoralising experiences of my life: even with 15,000 words of supporting notes, written in a desperate attempt to give them all the information they could possibly need, it took over six months and an appeal for the Department for Work and Pensions, as represented by ATOS, to realise I'm disabled.

[A grinning person wearing a red top hat sits in a wheelchair, holding up a sign that reads "The government says I'm not disabled." This photo was taken during the Lashings run at OxFringe 2012.]

Today the story is about my grandfather.

My grandfather is in his mid-90s. Until two and a half years ago, he cared for my grandmother; since then, he's been living alone in a house with no full-time neighbours, half a mile and change down a grass-and-dirt road. He qualified as an engineer in the 30s - having studied in the evenings around his day job on a Lord's estates. He served in the Second World War, and picks and chooses the stories he tells us very carefully. After the war, he worked as a civil engineer for local councils right up until retirement.

For the first time in his life, he's applying for benefits: specifically, Attendance Allowance. The form's identical to that for DLA. The way we're working this is: he went through it first, then sent it home with my aunt for her and my mother to look over.

To be clear: both my aunt and my mum hold PhDs in the humanities, specifically in languages. They both work for one of the top ten universities in the world. They're about as privileged as it's possible to be in terms of sheer force of highly-educated middle-class ladies: they were the first in their family to go to university, and my grandfather supported them in that - enthusiastically.

So: they went through his form. They annotated it with places it needed expanding. They typed up their notes in fair; and last week, I went home to look over both my grandfather's form and the notes they'd made on it.

For nearly every single question, I added more notes: you should say this; you need to quantify that; is the other true? - because if so, he should be saying it. For some questions, they'd collectively ticked the box figuratively marked "does not apply" - and I took one look and said "actually, yes, it does."

For the first time in his life, my grandfather is asking the government for financial support. He doesn't ask for help: this is painful enough for him in and of itself.

The form heaps shame and indignity on top of that.

For the DWP, asking isn't enough: you have to beg, and they don't even have the decency to tell you this explicitly.

It's not enough to say "well, I sometimes have a bit of difficulty with getting to the loo, but I suppose I cope?" No: you have to go into gruelling, agonising detail: about how long it takes you to get to the loo. About how much difficulty you have balancing. About how many times a day you soil yourself, and exactly how much clean-up and laundry takes out of you - or how much time you spend wearing dirty clothes because you simply can't face it. About how you can't go to the toilet in the night, so you use a potty or commode - and how hard it is for you to empty it in the morning, because if you're carrying a chamberpot you can't use both hands for walking sticks.

Make no mistake: filling out these forms is gut-wrenching, heart-breaking and humiliating. They force you to give excruciating detail on all of the worst parts of your life; there is no space for reminding yourself that you have coping strategies, that it's not always this bad, or they'll decide you're fine all the time.

But they don't tell you this. They don't tell you that to be in with even half a chance of getting appropriate support, you have to focus on worst-case scenarios. My grandfather couldn't tell that from the form and guidance notes; my mother and aunt couldn't tell, either. The only reason I know is that I've done this before: that I asked friends for help, that I knew people who knew to recommend the excellent Benefits and Work, that I've been here and done this and squeezed blood from this stone once before.

This is not fair. This is not equitable. This is no way for a just society to treat people who've dedicated their lives to it, whether legibly and traditionally or outside the mainstream; it's no way to treat people who haven't been able to dedicate their lives to it.

The Welfare Reform Bill isn't making life easier for the most vulnerable. It's not protecting them. If anything, it's making the entire situation worse.

There is no excuse.

I love the welfare state

Posted by kaberett

[Content notes: medical gatekeeping, current government policy, graphic medical details, cancer]

... I think the NHS is great
Forget about your worries and your strife:
We’ve got our - healthcare guaranteed
They will not charge us any fees
The welfare state’ll care for us for life!


And, do you know, I really do love the NHS. I really do love the welfare state. I love receiving DLA; I love my bus pass; I love my wheelchair. (Yes, my wheelchair? Is the NHS' fault.) I love all of the various ways in which the welfare state makes it easier to Exist While Me in our society; I am endlessly grateful that I can leave the house, that I have support to Get Stuff Done, and so on. I have wept grateful tears over being able to call NHS Direct and be told whether or not to go to hospital. I love being able to attend my GP once every couple of weeks in order to catch up on all the things that have gone wrong, tweak my doses, and so on. I love that my prescription medications - I'm on somewhere around 10 a day, ignoring my as-and-whens - only cost me one hundred pounds a year.



When they're ill in the US, their budget's blown,
Bankrupt by doctor's bills, not like at home
GPs and hospitals for free
For every slightest malady.
When you've fallen into the rocks and plants,
Or your kid's put ants into your pants,
Or maybe - tried a few...
The NHS is always there to care for you.


For nearly a year in there, I thought I was going to be moving to South California for grad school. Specifically, I thought I was going to be moving to LA - a country where one of my standard medications isn't FDA-approved, and a city that makes my lungs hate me for a good three months after I move somewhere with better air quality.

Liminal space, language, and me

Posted by kaberett


Hello: my name's kaberett, and English is my second language.

Wait: that's misleading.

My name's kaberett, and English is my primary language.

To give you the full story needs a bit more than a one-sentence introduction in the style of twelve-step programmes. Let's try again: my name is kaberett, and I'm a third-generation immigrant. I was born and raised in the UK; I spoke only German until I was about two and a half; and for complicated and tedious reasons I wasn't allowed to speak any German at all between the ages of six and about eleven.

I don't sound Austrian when I speak English; I don't sound English when I speak German. My proverbs and my nursery rhymes and the stories of my childhood are all in German, up until you run abruptly up against Robin Hood and the Hobbit. But my grammar, and my abstract thought, and my pronouns? They're in English.

My life is bilingual, liminal; my adulthood is, ignoring food, English. It is RP; it is university-educated; it is a disguise, but it does not ring hollow; it is only half the truth, but it is not a lie.

In English I am they; I am genderqueer; I am trans* and queer and I am assertively - aggressively - ungendered, or rather: I am gendered, and it is neuter.

I don't know how to occupy that space in German. I don't even know how to translate queer, with its reclamation and its political charge and its I'm-here-get-over-it, with its oddity and slyness and gentility.

Auf Deutsch I can be sie or er. I don't know how to occupy the space of they: of it, of es: I could, perhaps, refer to myself as mann - one - and force every descriptive noun, every adjective, into the neuter. Not der Lehrer, die Lehrerin: das Lehrer, the teacher, perhaps? But even there, I'm norming the masculine form of the noun.

I don't know how to navigate these waters.

But here is something I can say, can say loud and clear: I might not know how to occupy neutral space in my mother tongue, but at least it is honest about gendering within a binary. At least it is upfront.

No subliminal associations with teacher, doctor, engineer, nurse; no (s)he, no hero(ine): no. We will not relegate the feminine to a parenthetical adjunct to the masculine, an afterthought or grudging concession. Our noun classes are gendered, to be sure, but we have a choice in how to express that. Is the feminine marked? Yes: it is, with suffices to the masculine, but they are not parenthetical.

Schau mal, see here: die LehrerInnen; die Lehrer/innen. The teachers. Women need not be relegated to the position of cramped marginal notes: the feminine can occupy equal space, equal time, on the page. We need not soften her, nor encircle her in chains.

I don't know how to describe myself in German, but here's something I can ask you to do in English: if you must use language that asserts a binary of gender, please don't give the masculine primacy.

Instead, take a leaf out of a cousin's book: s/he, not (s)he. Hero/ine, instead of hero(ine).

If - when - we're pushed into the margins -- we don't have to stay there. We can take out our fountain pens, our marker pens, our spray-cans, our crayons, and we can say:

We are here. Get over it.

As a battle cry, it is perhaps true that librarians and book-herders miscellaneous are the only people likely to be taken faint with horror. But: we can fight this on our own terms, quietly, one by one and word by word.

Let's try it.

The show must go on: taking Lashings offstage

Posted by kaberett

Here's a secret, that probably isn't very: when I get up on stage, I don't know what I'm going to say.

Oh, I know what I'm going to sing, and I know that the introduction is going to be something a little like ladies, gentleman - and everybody else! ... Ancient Greeks... Oscar Wilde... it's time for a history lesson!

And off I (gaily) launch into our Brief And Eurocentric History of Western Queerdom.

But it's not like Shakespeare, and it's definitely not like my Year 9 production of Bugsy Malone: when I roll up in front of you, my words are always all still in potentia.

It wasn't always like this, for me. I used to freeze before going on stage; I used to babble once I was there, stalling abruptly every time I let my mouth run ahead of my brain. I used to come off shaking and nauseous and convinced I'd done everything so wrong that I should never be allowed to perform again.

I'm always astonished by the lengths my brain will go to to convince me I'm not worth taking up people's time.

My orchestra started the job of curing me of this, but it's Lashings that's pushed me the rest of the way: that's helped me internalise the lesson from counselling that well enough is, well, enough.

It's Lashings that's confirmed for me that I can wheel out in front of people and open my mouth and get laughs. It's Lashings that's shown me that a certain amount of arrogance self-confidence can get you an awfully long way.

When I talk about taking Lashings offstage - taking Lashings home with me - I don't mean the work of blogging, and I don't mean the work of learning or writing acts, and I don't mean the work of rehearsing: though, of course, there is always that too.

I mean...

I mean several things, all at once: I mean the obvious hands-on behind-the-scenes work. I mean the introspection that makes me easier to live with. I mean the sense of community and of fairytales and of good magic, of being only a whisper (or a tap of my heels) away from People Like Me. I mean the knowledge that I can educate: that I can make the world a little better by being me, by sharing what I've learned, by saying: I am trans* and queer and mentally ill and disabled, and if there is anything at all I can do to help you with what I have won and saved from my daily trials by fire, please say.

And what I mean is this: that I can arrive at an interview with my chin up, and I can talk about things I love with joy in my voice and a smile on my face. I don't need to know what I'm going to say in advance, any more: I don't need to plot every spinwise step of the dance, lest I stumble and fall.

Thank you: this is because of you, and as such it is for you. I don't think I can pay you back for the gift you have given me.

I only hope that I can pay it forward.

Reactions to the same-sex marriage bill

Posted by Lashings of Ginger Beer Time





As I’m sure many of you are aware: A bill has been approved in Parliament which will legally recognise same sex marriages in England and Wales. I’ve been asking other Lashers to share their views on this issue. In this post I’ve collected their critical responses. As you might see, it is far from unanimous praise.

At this point I thought I might bring up a point of information: one issue that came about from a discussion among Lashers was the issue that this legislation applies to England and Wales and not for the whole of the United Kingdom. Scottish parliament is currently drafting similar bill with the view to holding a vote on the issue in the near future. There seems to be no plans to vote on a same sex marriage bill in Northern Ireland.

I give a personal thank you to kabarett, Isadora, Ganymede and Sasha Rocket for sharing their views. 


kabarett: I’m disappointed

I’m going to say this upfront: I’m disappointed.

I’m going to set aside the issue of whether marriage should exist as a legal institution, and focus instead on the principle that “separate but equal” isn’t, and disenfranchising (especially vulnerable) populations is a deeply unpleasant thing for any government to do.

So: way back when, a public consultation on “equal marriage” was begun. Between its name and Lynne Featherstone’s involvement, I was actually hopeful: I thought we might get marriage equality, or something approximating it, in which the only requirement was “consenting adults”.

Hahahahaha no. Trans* people are shafted, in more ways than I can briefly list: luckily, other people have been pretty comprehensive. Poly people have, naturally, been ignored. There’s not even the slightest glimmering of a hint of the existence of genderqueer people. Religious groups haven’t been given the freedom to make up their own minds. Different-sex* couples don’t get to have civil partnerships, even if they want to avoid the cultural and religious baggage associated with “marriage”.

So here’s what I think the outcome is: the general public will likely assume that “equal marriage” has been achieved, when it hasn’t. Any efforts to increase the scope of this bill once it’s passed through the Lords will face much harder struggles than they would have done if the initial draft had been passed. Cis gay people of the general Stonewall flavour, having been enfranchised, will have absolutely no incentive to campaign with anti-assimilationist queers for our equality.

I am bitterly, bitterly disappointed that as a trans* genderqueer queermo, passage of this bill is likely to make my life harder rather than easier.

So my next step? Well. Letter-writing, probably, and picking my metaphorical banner back up off the floor and heading back out onto the metaphorical streets. Be the change you wish to see, and so on, because - what else can I do?

* I use “different-sex” and “same-sex” as descriptors because (a) oppositional sexism is rubbish and (b) binarism.

Isadora: That the C of E will not be allowed to perform same-sex marriages is deeply upsetting.

This is the beginning of something I’ve wanted for a very long time, and my overriding reaction is positive and optimistic. I do however, think there are some problems with the bill as it stands. For different-sex couples to not be able to have civil partnerships makes no sense. I define as bisexual, and on a personal level I feel that there is something ludicrous about a union with any partner I might have being defined differently, as a marriage or a civil partnership, depending on that person’s sex. Whilst all my relationships have been slightly different, I don’t think the sex or gender of my partner plays a big part in that. To make marriage available to same-sex couples, but not make civil -partnership available to different-sex ones seems illogical, in addition to the implication that a civil partnership is “lesser.”

That the Church of England will not be allowed, in secular law, to perform same-sex marriages is deeply upsetting. It’s a major barrier to those of us working within the C of E to try and change attitudes and eventually, hopefully, canon law. It was already going to be a long process, but this has not only put a very solid practical barrier in place, it will also make it harder to argue the case from a “what people believe/want” perspective. I think this will increase the invisibility of the large number of Anglicans (in particular, but also other religious groups) who support either same-sex marriage or equal marriage. Those both inside and outside the Church will be less likely to listen to us, because of the impression “well, that’s not what the Church/Christians thinks/want.”

My teenage self would have wanted a church wedding, but would probably still be overjoyed at this bill. I want to briefly allow her that moment of joy that she waited so long for. Probably my younger self was quite traditional about relationships, even though it didn’t always feel like that at the time. I wanted the fairytale marriage, but with another person most likely of the same gender. My current self has bits of that. I do view both the vote and the bill as a highly significant positive step and it did give me heart-surging butterflies. But there is still more work to do.

Ganymede: do we still need to have our “legal sex” recorded at all?

I’m cautiously positive about the bill - I think it’s a great step forward, although I share kaberett’s disappointment that there are so many areas where it falls down. But I’m particularly interested by the implications it might raise for the future. Marriage is, I believe, one of the few areas where your “legal sex” actually impacts materially on your legal rights - and the passing of this bill is undermining the usefulness of the distinction between “legally female” and “legally male” still further.

It was pointed out to me recently that in centuries past, “legal sex” used to hold a lot more legislative weight. Whether you were legally classified as “female” or “male” impacted on your rights in numerous ways, mostly boiling down to whether you had the right to property, or you were property. But with every step towards gender equality, more of these legal distinctions have been eroded. And to me, the question this begs is: do we still need to have our “legal sex” recorded at all?

Imagine if every person - regardless of chromosomes, genitals, secondary sexual characteristics, sense of identity, or Gender Recognition Certificate - had an equal right to marry any other person ey chose (or become civilly partnered to em!). This bill hasn’t got us there yet, but I really hope it’s the direction we’re headed in. At that point, I’m not sure there would be any great legal distinction any more between “female” and “male”. The concepts of “female” and “male” would still have a function as social genders, and as ill-defined biological descriptors. But beyond that, surely it would only be a matter of time before their usage in law was done away with as unnecessary and outdated. No need to pick M or F for the birth certificate on the basis of a cursory glance at the genitals. No need to jump through hoops getting one’s true gender identity officially recognised. No more legal conundrums where non-binary or intersex people are concerned. And I find that thought quite exciting.

Sasha Rocket: The law’s job isn’t to change the culture, it’s to reflect it

I think the fact that same-sex couples can now get married is really awesome. Although the legal differences between a marriage and civil partnerships are tiny, I think the social statement the bill makes is a massive one, that we’ve been fighting for, for a very long time; it says that, as a society, we believe same-sex relationships are just as valid as heterosexual ones, and I think that can only be a good thing. It also says that the notion of ‘separate but equal’ isn’t equal at all. When you remember that, just 10 years ago, Section 28 was still in force, this is a remarkable step-forward. Although the bill undoubtedly has flaws and particularly lets down trans people, I hope we don’t lose sight of the massive progress we’ve made in such a short space of time.

The fact that civil partnerships aren’t being extended to all couples, as well as the fact that religious groups are not legally allowed to perform same-sex marriages, is somewhat disappointing. I think the real failing of the bill, however, is the fact that it fails to accommodate trans people, in ways that have already been explained by other Lashers. There’s still plenty of scrutiny to go though, before the bill becomes law, from both Houses, and particularly LGBTQ groups so, with enough political action, some of the failings may be remedied. I’ll wait until the whole legislative process is over before I get too hopeful but, for now, I’m cautiously optimistic.

As some other Lashers have said, a wider debate about the nature of relationships would be awesome, but I don’t think we need (or even should) be looking to parliament for that debate, particularly not currently. The law’s job isn’t to change the culture, it’s to reflect it; it’s up to us to change that culture. I think we’re slightly in danger of losing sight of the fact that lots of people have now had their relationships recognised as legitimate, and I hope that the radical change there’s been in the last decade acts to motivate us to keep at it and reminds us that we are getting somewhere.

The pursuit of life, liberty, and happiness

Posted by kaberett

If you've seen me perform with Lashings, you've almost certainly seen me take prescription medication while on stage. You've likely seen me on codeine. And here's what I can tell you for certain: you have never, ever seen me unmedicated.

Of course, I'm not the only one of us who takes meds on the regular: when my timer goes off in LashSpace I'm not the only one who reaches for tablets. But, well - it was noticeable that for the three-week Edinburgh run, the largest category by volume in my packing at the beginning of the trip was enough medication for three weeks. It's noticeable that in Lashings, as well as in my professional life, people tend to ask me for painkillers first - and that is 100% and entirely the reason that I carry ibuprofen with me at all times. (I'm continually maxing out on a different NSAID, so I can't take ibuprofen without serious health risks - but I like to be able to offer people something slightly weaker than neat opiates!)

Here's another anecdote for you: two weeks ago, I went to a GP at my surgery (never seen her before), and asked - among other things - about the possibility of sleeping pills to help with my insomnia. I was very, very careful to not request temazepam by name. She looked at the list of other things I'm taking - for the record, my daily meds are mefenamic acid, paracetamol, amitriptyline 25mg, citalopram 40mg, Buscopan, omeprazole, Fostair - sucked her teeth, and said that she didn't particularly want to prescribe it, because it can be awfully addictive, you know, and with everything else I'm on...

... and that, ladies & gents & everyone else, is when I had A Realisation.

Well, that's not quite true: it had been fermenting for a long time. But here it is: my approach to medication is not terribly common.

I'm reminded of this every time someone mentions that something is hurting, I offer them painkillers, and they demur: "Oh, no, it's not that bad," or "I'd rather wait to see if it clears up by itself," or any one of a number of other responses. It's not that I think there's anything wrong with that attitude - I used to be very, very good at it myself - but these days... well, I find it baffling (not least because ibuprofen has a rather milder side-effect profile than e.g. alcohol!).

I mean, of course, obviously - it's taught to us by the cultural expectations of a stiff upper lip, and of "musn't grumble"; by "the cure is worse than the disease"; by an ideal of self-sufficiency; and by a media that encourages us to mistrust medicine and medics, quite aside from all the people with good personal reasons to be mistrustful.

I know, intellectually, that I used to understand this at a deep and visceral level. I used to be so invested in the idea that I wasn't really in pain - that I was making it all up - that I'd skip my meds and put taking them off until I was on the floor and immobile with agony, and even then I wasn't sure I wasn't just an attention-seeker.

I know better than that these days.

These days, I know it's a lot easier to keep pain under control from the word go than it is to try to get a grip on it once it's unbearable. I know that for me, once I've started being in enough pain to notice, the vast majority of the time it's only going to get worse. And, importantly, I'm intimately familiar with drug side-effect profiles and the interaction of anything I'm asking for with everything I'm already on, and by the time I'm asking a doctor to prescribe me something I've definitely already made the cost-benefit analysis and I've probably already experimented with the drug in question. (Pro tip: people with chronic pain are often pretty relaxed about sharing meds with others they trust to act responsibly, in the general spirit of "try before you buy" and of "pay it forward".)

So I've put in all this work: on getting past my inhibitions about "making a fuss"; on researching my condition; on investigating plausible management regimes; on working out what might improve my situation.

Off I trot to the GP, and I say... "um, I'm having this problem, er, is there anything at all you might be able to do for that?" And if the GP sounds encouraging, I bimble on to "um, um, um, I've done some reading, um, it sounds like drug X might be useful? Maybe?"

Because here's the problem: I can't afford to be seen as "drug-seeking". I cannot afford the risk of doctors deciding that I don't actually need pain relief as pain relief, but what I do need is weaning off my addiction to the drugs that make my day-to-day life liveable. I can't be an effective self-advocate in medical settings in case gate-keepers decide that I'm a pushy patient - in case I seem too high-functioning, too well, to really need all those drugs.

And it was earlier this week that I worked out why this problem keeps arising.

(Before we go any further, I want to point out that my experiences as wheelchair-using crip are also my experiences as somebody who is thin, and white, and upper-middle class, and has access to medical journals and the education to make sense of the jargon, and covered by mummy's health insurance up to the age of 25. Most of the chronically ill people I interact with are either at (a) my university's Disabled Students' Campaign or (b) Diary of a Benefit Scrounger, i.e. heavily skewed towards activists; both have significant overlap with my areas of privilege. I can't - and don't - speak for all people living with chronic illnesses.)

People with chronic pain - with chronic illness - seem to me to be more likely to be very, very good at judging whether the side-effects and interactions of a new medication are worth the benefit we'll get from it. I've got so many things I need to discuss at every doctor's appointment that by the time an issue makes it to the top of the queue, I've probably been dealing with it for months. I often know what we want - but I don't have an awful lot of time to discuss it in, because I need to talk about three other things this appointment too.

But if you're well? Mmm. If you're healthy, and you're used to uncertain patients who aren't keen on taking pills... well, I can see why I'd come across as worryingly desperate. Mostly, it's because I am.

Just another thing, I suppose, to chalk up to coming from different sides of the cultural divide that is pain.

Gavin de Becker: The Gift of Fear

Posted by kaberett

[content notes: misogyny, abuse, violence, rape, murder, suicide]

Gavin de Becker is a security specialist based in Los Angeles; he's the founder of the eponymous private security firm Gavin de Becker & Associates, whose clients include many celebrities and - over its lifetime - an awfully large proportion of US Presidents, Governors, Supreme Justices and other politicians. He's evidently very effective; based on his experiences, he's written a number of books that have made it onto worldwide bestseller lists.

There's one in particular I see recommended all over the place, particularly in anti-abuse activism or counselling. The Gift of Fear is mentioned over and over again, whether it's in comments on the fantastic advice column run by Captain Awkward or in the course of my work at VaginaPagina. There's one name that comes up, over and over, more than any other that I can recall: Gavin de Becker.

And so! And so. I finally got around to reading it.

Before we go any further, I want to say this: The Gift of Fear was first published in 1997. In England and Wales, the legal exemption for marital rape was only abolished in 1991. He (note, please, the irony) was among the first people to get the issue of predominantly gendered violence into the public consciousness. His assertion that "women always have the choice to leave" abusive relationships is horrifying, but he was possibly - possibly - writing that in a context where saying "leave" was radical, against a backdrop of even greater social pressure to "keep working on the relationship". But even if that's true? He's had 15 years to update the book (he wrote a new foreword for the eBook edition!), and the statistics he cites make it abundantly clear that people were trying to leave, all the way back in 1997.


Bearing all that in mind, here is my one-sentence summary of The Gift of Fear: Gavin de Becker makes a fundamentally reasonable point in the shittiest and most self-aggrandising way he can without having it be immediately obvious to everyone.

(Also? he's a misogynist who doesn't understand geology.)

In slightly more detail, have a series of excerpts and my keysmashing about why HE IS WRONG ABOUT ALL THINGS.

What's in a name?

Posted by Lashings of Ginger Beer Time

This week's blog post is something a little different - below, a number of Lashers share the story behind their Lashings names! We figure that regular readers might find it interesting, and that potential new Lashers might be find it useful when it comes to thinking of their own stage names...



Galatea
When I’m feeling particularly dangerous, I perform under the full stage name ‘Galatea Gorgon’. I acquired the first part of the name from an appallingly creepy story in Ovid’s Metamorphoses, which we’ve performed as a dance piece from time to time -- the sculptor Pygmalion, disgusted by the lewdness and crudeness of human women, decides to make himself a perfect girlfriend out of ivory and sleep with that instead: a bit like an Ancient Greek version of a RealDoll. He ends up falling in love with this beautiful inanimate statue which never talks back, and eventually the goddess Venus makes it come alive so it can marry him. Bleargh. I think that in 21st century culture, a lot of women are encouraged to be our own Pygmalions, shaping ourselves into perfection for other people’s benefit while keeping as quiet as possible; shoving any inconvenient messiness or imperfection out of view. The Gorgons, meanwhile, were completely the opposite -- they’re female monsters from very early Greek mythology, and so outrageously fierce and ugly that one look at them will turn you into stone! Put together, I think these two names speak to a really interesting tension, particularly since most of my performance is dance-based and I rarely speak directly to the audience. I like the idea of playing around with the gaze, looking and transfixion -- when I dance for you, is it about beauty or about horror? Who is being brought to life, and who is being turned to stone?


Sebastienne
This is a name I’ve been using for at least ten years, now. It’s a feminised form of Sebastian, as in Saint Sebastian, who’s been a site of deeply queer and kinky imagery for some centuries. He’s generally portrayed bound at the wrists and bleeding, pierced by phallic objects. Ahem. Anyway. After leaving prison, Oscar Wilde used the name ‘Sebastian Melmoth’, in what I’ve always considered to be a nod to posterity - to the idea that he might be (as he now is) considered a queer martyr. “Sebastienne” was only ever meant to be one half of my psyche, the other part being designated “Alia”.. but we don’t hear from her much, any more. (That’s not quite true; I’d say there’s been a reintegration. Alia’s still around in my gender identity and my politics; but I have Sebastienne’s sexuality and sense of style.) The divide was a necessary consequence of my adolescent inability to reconcile my belief in social justice and the importance of truth (Alia) with my Wildean conviction that “pleasure is the only thing one should live for” and the importance of artifice (Sebastienne). Lashings is where I learnt that it is entirely possible to embody both these things.

Goblin
at some point in my anorexic early 2000s, i dropped to 2 1/2 stone and ended up in hospital, in starvation psychosis. seeing my reflection in a hospital mirror in my delirious state, i thought i was a goblin. And then, as i recovered, it kinda stuck - still, a significant proportion of my friends call me Goblin. Like a number of anorexic girls, i used to adore the symbolism and images of angels and elves, their effortless perfection - for me, referring to myself as Goblin, implying all my skinny gawky pudgy glory, is part of embracing my many imperfections instead of striving for impossible perfection. Also, it suits me, and i think the ears are cool. ;-) 


kaberett
I’m a singer; my first language is German; and I’m decidedly political. And the deliberate misspelling of the German “Kabarett” - a word that is suggestive of cabaret as political satire? Well, that’s for reasons to do with my wallet name & a slightly unhealthy love of anagrams: so my stage name comes from the handle I invented for commenting on political blogs. In news that will surprise no-one who’s ever met me, I am indeed entirely too delighted by my own cleverness, at least when it comes to multilingual puns.


Orlando
I took my stage name from the eponymous hero of Virginia Woolf’s 1928 novel Orlando. It was actually CN who suggested I use it, after reading an essay I wrote about the novel, but it fit so perfectly that I now can’t imagine using anything else. The character Orlando is born a boy in the Elizabethan era: the book follows them through a surreal and dreamlike version of history, during which they age very little over several hundred years, undergo a mysterious change of sexed morphology, and begin presenting as female, male, and neuter in different contexts. Orlando is openly gender-fluid and bisexual - they ‘changed far more frequently than those who have worn only one set of clothing can conceive… and enjoyed the love of both sexes equally’. The book has a lot to say about the cultural construction of gender, and I feel that the gender-fluidity of the main character speaks a lot to my experiences, despite the fantastical nature of the story.


Valentina
I turned my surname, Valentine, into my stage name! Valentine came from my looking for something that sounded awesome that also went with my blog’s name, Silicone Valley, and is extra-excellent because it’s also the name of the villain in Mortal Engines, which is basically one of the greatest books ever. Yay! My name rocks.

Cleopatra
This is my full real-life name. Natch. I’ve almost never used it in English-speaking day to day life, it feels a lot like a best Sunday dress, too much for everyday use. Plus, it’s a mouthful. (In GREEK it sounds fine.) I’ve wanted to be on stage for basically for ever and at some point my best friend and I coined the idea of keeping my full name for a stage name, so when people started telling me to pick a Lashings name there was never really any other choice. (Plus, I am a Classics nerd so it has that going for it too. Galatea was rooting for Patroklos based on this. ;))

Nigel Newt
I'm a Nigel - that friend, relative, partner or other close acquaintance, who seems to understand enough of the principles of feminism to not be completely unbearable.  I make some contribution for the easy stuff, like the housework, or generally progressive causes.  But I also get something of a free pass - I'm shown more patience when I inevitably show my privilege. Newt is a female character in "Aliens", who gets to talk to Ripley (another female character) about monsters - fulfilling all three requirements in Dykes To Watch Out For's "The Rule" .  As my first role in Lashings was the increasingly grumpy recipient of all the token female roles from popular sci-fi & fantasy, this seemed an appropriate aspiration.

Florestan
   It has two famous uses as a name for characters in classical music. First, it is the surname of heroine, Leonore, and her imprisoned, starved husband, in Beethoven's opera Fidelio. She disguises as a man (called Fidelio) and rescues her husband from political prison. I like having a name that belongs to both male and female, being somewhat genderqueer, with the female displaying strength. 
   It is also a name used by Robert Schumann, a brilliant composer who experienced quite complex mental health issues in his short life. He often wrote words and music signed with the names Florestan and Eusebius, who represented contrasting aspects of his personality. Florestan was the exuberant, passionate and - in my imagination - slightly out of his own control side.
  So we have a heroine/boi, a man she saved (both all-singing), a fictitious wisp of borderline personality disorder and a source of wild, imaginative music and musical philosophy; Florestan.


... so there you have it! Readers who have chosen their own names, whether for the stage, the internet, as a new legal name, or in any other venue: is there a story behind yours? We'd love to hear it!

Transformative works

Posted by kaberett

this is my skeleton
this is the skin it's in
that is, according to light
and gravity
i'll take off my disguise
the mask you met me in
'cuz i got something
for you to see

– Ani DiFranco, Shameless

Every day of my life is a transformative work.

“She”, they call me, or “What's wrong with your legs?”, they ask, or “We don't really need to tell the extended family this, do we?”

I was assigned female at birth. I started binding in 2009. I was diagnosed with endometriosis in 2010: I'd been symptomatic for six years. In 2011, I changed my name and started using a walking stick (and that's Ani's fault – but a story for another time). In 2012, I started using a wheelchair.

One way or another, I seem to spend an awful lot of my time transitioning: between gender roles, between modes of apparent ability. As I become more visibly trans*, as I become more visibly disabled – as I remake myself into something to live with, rather than something to live through with gritted teeth – parallels become more and more obvious to me.

I'm a long way from being the first person to voice these similarities, and I shan't be the last, but:

That I am using a walking stick today, and was using my wheelchair yesterday, doesn't mean I'm “better”: it means that the awkwardness of the chair outweighed its benefits. That I use feminine pronouns in some situations instead of my generally preferred neuter ones does not, for me, mean that I'm not genderqueer; definitely doesn't mean I'm not trans*.

It just means that sometimes I get tired: of needing to go an extra half mile to get to dropped kerbs; of the Victorian prescriptivist arguments over the epicene pronoun; of needing to remember that car drivers behave strangely when you are in a chair; of the looks on people's faces at my long hair, or when I stand up to fetch something from a shelf.

Sometimes it is easier to wear a mask and play pretend than it is to patrol my borders.

One way or another, I spend a lot of time performing my identities. In public, in my chair, I have the choice of being authentically me – of standing, of lifting my chair up stairs, of not allowing society's assumptions to disable me further – or I can let the fear keep me sitting, keep me smiling, keep me asking for help, keep me from slamming on the brakes whenever anyone touches my chair without permission. I can dutifully bind every day, facing down the chronic fatigue to make sure laundry happens when it needs to for that to not be kinda unpleasant... or I could listen to and respect my body and get misgendered more frequently.

In my experience? The “oh dear it's a wheelchair how do we deal with that” face has an awful lot in common with the “oh god they're going to demand gender-neutral markers in the records aren't they” face. The overbearing concern and the overwriting of my autonomy are common to both: “Well, if you're sure...”

And so I end up performing my identity. I suppose, at least, I'm not without choice in which role to play: like I say, I can be exaggeratedly a good crip, a good genderqueer person, and fit people's expectations; or I can be aggressively and ostentatiously myself and stare down the world with it.

But neither of those are easy options.

And yet. There is – as ever, as in cliché – a third option. And that is to close my eyes, take a deep breath, and make a public space for my private self – to do out loud the work I've been doing inside my head for years.

I was a field geologist. I was a hiker. Recognising that those aren't things I can do any more – that I'll likely never do fieldwork on Mount Erebus, Antarctica; that it's going to be a long time before I get up to a 3000m peak under my own steam again, if it ever happens; that the Hangerer, Austria is going to remain on my list of Unfinished Business – is, yes, a loss. Saying goodbye to my childhood nicknames and to ticking “F” on forms without compunction wasn't all that much easier, honestly.

… did you exchange a walk-on part in the war for a lead role in a cage...

But I couldn't keep it up. A major part of fieldwork is knowing when you're hitting your limits – and how to avoid getting yourself killed. There is only so hard I can push myself, so far I can go, before I have to face up to the fact that I need to stop: this far and no further, or, more often, that far and no further, the line way out of sight behind me. (And I want to note here that a major part of the trans* experience, though thankfully not part of my trans* experience so far, is also how to avoid getting killed.)

Here is what I am learning: how to recognise my boundaries. How to enforce them. How to treat myself with kindness. When to fight, and when I'm better off saving the energy for another day.

Have my body's limits – in terms of physical activity; in terms of tolerating recognition as female – shifted? Yes, they have. But this is not limitation and it is not weakness: I am listening to myself, and I am learning myself.

And in that there is strength.

We are a work in progress, my body and myself, but I refuse to regard myself as defective, as a failure, as a cosmic error to be struggled against and overcome. I'm reframing myself for myself, and for my audience: this is the only body I get, and for some things it works marvellously and for others it doesn't, and that is not a failing.

All it is is variation.

Myth #1: teenagers don't get endometriosis

Posted by kaberett

[Content notes: graphic medical descriptions, discussion of surgery, medical disregard for health]

Everyone gets period pain, right? ... right?

No? Really? Damn. You see, everyone around me - family, friends, doctors - spent six years assuring me that pain so bad I couldn't stand; that mefenamic acid and co-codamol together didn't control; that I couldn't think in complete sentences through -- was normal. Normal: it was just most people dealt with it better than me. What kind of wuss am I?

As it turns out, if you're in that much pain it is not okay. Regardless of the reason - regardless if you've got a low pain threshold - being in pain is rubbish, and the compassionate and helpful response is never encouragement to toughen up.

Me? I'm one of the lucky ones. I have secondary dysmenorrhea: my pain has an identifiable organic cause, so I get a diagnosis and an attempt at treatment. Hurrah!

... oh. Wait. The other thing. I have endometriosis: it's a chronic condition in which material resembling the womb lining exists outside the womb, typically in the abdominal cavity, rarely in the lungs, and - in a vanishingly tiny number of cases - the central nervous system and brain. This material builds up and breaks down in response to the body's hormonal cycle; it grows into organs, gluing them together; the net result, for most sufferers, is chronic pain and fatigue. If you're really unlucky, it'll eat into your sciatic and genitofemoral nerves - causing shooting pains in the thighs and labia.

Somewhere between 45 and 70% of people presenting with chronic pelvic pain have endometriosis.[1] Estimates of prevalence range from 2 to 22% of people with uteruses of reproductive age; I most commonly see estimates of 10-15%. These estimates are necessarily uncertain, because the only way to diagnose endometriosis is via laparoscopic (keyhole) surgery.

The average diagnostic delay in the UK is eight years.

I'll say that again: for an illness causing chronic pain and fatigue, affecting a significant fraction of the female-assigned-at-birth population,  the average time to diagnosis in the UK, from when symptoms first appear, is eight years.[2]

Europe-wide, "there is often a delay of up to 12 years".

Here's some of the "why": sufferers think, or are told, that their symptoms are normal. (See above.) Hormonal drugs provide temporary relief. Inadequate diagnostic measures are applied: you do not want to know how many useless transvaginal ultrasounds I had before I finally got referred to someone who could do something useful.

I'm decidedly middle-class; I've had extensive scientific training; I'm a powerful self-advocate; I'm covered by my parents' medical insurance, which I ended up using. I'm lucky.

And even with that - even with all that - it took six years for me to be diagnosed. Take a moment to think about what that means for the average.

More than once along the way, medical professionals told me that teenagers don't get endometriosis.

The Women's Surgery Group guidelines on endometriosis include:

Diagnostic and operative laparoscopy should be considered in those women with pelvic pain which has not responded after 3 months of nonsteroidal antiinflammatory drugs (NSAIDs), and/or 3 months of oral contraceptives.

I was on NSAIDs for six years. I spent 18 months on hormonal birth control that was causing severe depression. ("No," said the GP, "that's a rare side effect. It won't be the medication." Depression and anxiety will affect up to 10% of users of any form of HBC: it's a crapshoot finding one that won't do it to you. Me? I had a history of progesterone-sensitive depression, at the point the GP said that.)

Six years is conspicuously longer than six months.

Over and over, when talking to people with endometriosis, I hear that they've been symptomatic since they were fifteen, fourteen, thirteen. I was symptomatic from my very first period. But everyone gets period pain, they say, and that is how we convince ourselves that this is nothing out of the ordinary, nothing bad, that we should just man up. And we tell ourselves this while we are gasping for air on our sides on the floor, because breathing hurts.

When surgery was performed on me at the age of 18, I was classed as stage IV (severe) endometriosis. Even after they'd excised as much as they could, I am classed as stage IV - because the disease has glued my bowel and my uterus together, and the only way to disentangle them is to remove a segment of my gut, in a major procedure requiring a three-month recovery period and potentially a temporary colostomy. If I tell you that I have a family history of serious bowel scarring, and that the new endometriosis adhesions formed in the sites of my surgery incisions following my diagnostic laparoscopy, I hope you'll understand why I'm not keen on that option.

You do the maths: with an average diagnostic delay of 8 years, and an average age at menarche (first period) of 13, is it any surprise that teenagers don't get diagnosed very often?

Teenagers do get endometriosis. If you have chronic pelvic pain - or if you know somebody who does - please know this: it's not normal, and it's not okay. Know that there are places you can turn for help. Know what you're looking for. Know that not all of us have all the symptoms. Know that what feels like constipation might be nodules in the rectovaginal septum, and that's something worth shouting about. Pay attention. Notice. Notice when we don't talk about our pain, when the people who love us and the doctors who should be caring for us try to get us to ignore it, because we're not supposed to talk about periods. Try to notice when you stop trusting yourself: give yourself permission to listen to your body, to not just power-on-through, to complain about it and to demand that something be done.

Please don't ever feel you need to make a self-deprecating joke about chocolate ice-cream again.

In this, at least, you never have to be alone again.

kaberett can be reached at their username at gmail.com and is willing to answer any questions you might have about endometriosis. This post is part of an irregular series in which they talk about info they've picked up over the years.

Additional references
[1] Z Harel. (2006) Dysmenorrhea in adolescents and young adults: etiology and management. Journal of Pediatric & Adolescent Gynecology 19:363:371
[2] K Ballard, K Lowton & J Wright. (2006) What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis. Fertility & Sterility 86:1296-1301

Quite Unusually Interesting Literary Taxonomy, Bestiary And Glossary, or, what's in a name

Posted by kaberett

Names have power (warning: TVTropes). So do categories.

And that, boys and girls and everyone else, summarises what I want to talk with you about today.

Let's start with a little personal background: I use my chosen names in all walks of life. Online and on stage I'm kaberett; elsewhere, neither my forename nor my surname are the ones I was given. These are my choices and in them lie power - but not all of it is mine: among the ways family, and family friends, can assert their power over me is to continue using my given name.

Here's another thing: I'm queer. That's queer as in fuck you I don't want your assumptions about the gender binary; I don't want your assumptions about my attractions; I don't want your assumptions about what my relationships look like; and I don't want your assumptions about what I do with my body. I am tired of having to explain myself in closely-argued essays in order to be taken seriously. Sod the essays and the justifications and the "but it's just so haaaaaard to understand": I am done with that crap.

For today, anyway. Gentle reader, I apologise: you find me rather less forgiving than my usual.

... so. Labels, categories and names: they're important. Imposed on us, they box us in; chosen, they're perhaps more like a flower-pot, if you'll excuse the over-extended metaphor: good to begin with, but sooner or later we'll find we've grown and our roots are getting cramped, and either we beg people to give us more space or we break out ourselves, to find victory in terracotta shards.