I’m sure a lot of people have talked about this tweet by Paul Ryan from last week:
And I’m just so angry about it. I’ve tried to calm myself down. To comfort myself that there are lots of people saying how fucked up this is. But fundamentally, this is so violent. I can’t say nothing.
Because there is so much of this shit all over the place. It’s everywhere. The other day I saw a tweet about how good health savings accounts are, because you get to pay for healthcare with your own money!
And honestly, this is at its heart a problem of language. Because people in power keep using the word ‘freedom’, and making me feel like Inigo Montoya when he told Vizzini, “You keep using that word. I do not think it means what you think it means.”
Because for me, paying for my healthcare with personal savings would not make me free. Obviously I have paid for healthcare because I live in the UK, and while I worked, I paid my National Insurance contributions like everyone else. I am hoping that in the future I will be able to work again, and pay more into the system.
However, my ability to work ever again depends in large part on the NHS, social care, benefit payments, NICE, clinical trials, medical research. In other words, government spending on ill people. My freedom comes from, and is dependant on, these things. Both now and in the future.
I take eight prescription medications on a daily basis, two more on an as needed basis, two suppliments, and a non-psychogenic cannabis extract, CBD. The combination of these things enable me to be awake enough of the day to maintain friendships and support networks through social media. To be out of bed up to four hours at a time. To be able to wash most of myself most of the time in our modified bathroom.
But without the NHS, without my disability benefits, I wouldn’t be able to afford these things. The kind of freedom encouraged by Paul Ryan, the definition of freedom that lurks behind talk of healthcare ‘choice’ in the UK, would leave me locked in my house, in my room, in my bed, in a body on fire with pain from faulty nerves, in a mind without the energy to combat the disassociation and derealisation that often develop and accompany severe chronic pain.
Choice looks very different for someone in a healthy body, a car, and enough money to afford more than one option.
For me, all this talk of choice in services upon which my life depends is just terrifying. Because, yes, technically all the services may be available. Technically, it is possible to get X therapy or Y medication. If you can afford it. What if you can’t?
There is currently a large, double blind study going on in Norway on a medication which may be able to cure my primary diagnosis of CFS/ME/SEID. Just cure it. Done! If it works, I could take it and be healthy again! I’m only 33, so it’s not inconceivable that I could be working again before I hit 40. Given that retirement ages are heading toward 70, that would be another 30 years of working, paying into the insurance system I’m currently using.
But what if that insurance system no longer exists?
If the national insurance system in the UK is abolished, then should this treatment become available, do I just get it, or am I ‘free’ to pay for it if I can? How do I pay for it if my national insurance stops paying out disability benefits?
For me, and for very many other people, a financial choice is not a choice. As a household, we celebrated the day that we were finally able to choose a clean electricity supplier. Being able to choose anything but the cheapest option is, for many people, not an option.
That treatment I mentioned above? It’s chemo. They discovered it’s effect on SEID by accident when treating cancer patients who also had SEID. It works by wiping out the immune system so you have to start from scratch. It’s a serious, intensive treatment. For cancer and arthritis, which are two of the current uses of this medication, it can make you feel worse for up to 4 months after treatment. And even if it works, SEID often results in something called deconditioning. It has for me. Reversing deconditioning requires extensive sustained physical therapy. For me, going through this treatment and the recovery could take over a year, but result in being able to do a full day’s normal activity for over 30 earning, tax paying years.
But, if healthcare in the UK changes from a single payer system, there’s a high possibility of me being screwed. My SEID is a pre-existing condition, and if this turns out to be the treatment, it won’t be cheap. There is a high possibility that if healthcare in the UK becomes a marketplace, I will not be able to afford the insurance necessary to become healthy. And there’s no way that, for me, that is freedom.
It is difficult to describe how sheltered and isolated my life was before I moved away from home. I think it is even harder for others to truly understand. I don’t have to wonder how a time traveller from the 1950s would feel, arriving in the present day – I made that journey myself at the age of 18.
This works itself out in myriad ways. For example, I was 16 before I understood why a couple on honeymoon might rather share a tent than use two waterproof sleeping bags, even when on a cycling holiday, when all weight was under scrutiny.
A big cultural touchstone for this feeling of dislocation is music.
This is particularly true because of how important music has always been for me. I could sing in tune before I was 3. My voice got me on the stage of the National Theatre when I was 7, when the minimum age for performers was 8. I started learning to read score when I was 5, and joined the church choir shortly after that. I’ve performed in the Festival and Albert Halls, and have no idea how many concerts and recitals I’ve attended. All through secondary school, I did extra music school on Saturday mornings. I did music GCSE and A Level. I hold instrument grades for three instruments, and have a grade 8 singing with distinction.
All that though – all of it – is only relevant for white music. Classical, orchestral, church, and even if composed within the last 100 years, no electric guitars, and it has percussion, not drums. You know what I mean. My first CD was Mozart for fuck’s sake.
Turns out it’s totally possible to get culture shock in your own country. I vividly remember hearing Dark Side Of The Moon for the first time when I was 17. It was a revelation of a whole new world of musical possibilities. I was drunk on that one listen (I didn’t have a copy) for a week.
The radio was a window into a different world. A very small one. With thick, dirty glass. George Michael made it some way through the window. When his compilation album Ladies and Gentlemen came out, I listened to it over and over and over.
I skipped the one with Elton John though, because he was Gay, and that was Evil. Like murder. And touching your genitals. And too many bells during Communion. I don’t know how I missed, like, the whole of 1998. As I said, it’s so hard to describe to someone who wasn’t there just how far under the rock I was raised.
When I left home, Ladies and Gentlemen came with me, and I spent most of 2003 with unmonitored access to the world for the first time. I was no longer scheduled every day from 7am to 10pm. I had the internet. On my own computer. My phone bills were astronomical.
I discovered that most people didn’t even realise there could be bells during Communion, let alone care about how many there were. I explored new music as far as my meagre salary and crappy 2003 dial up internet would let me.
I found out George Michael was gay, and somehow couldn’t make the mental switch to thinking of him as Evil. I kissed lots of boys, fucked many of them, and it didn’t feel Evil either. I kissed some girls. I wondered if maybe I might be a bit gay too, and worried that maybe I was Evil.
All of which is a round-about way of saying that, for baby queer me, who wasn’t even sure what queer was yet, George Michael was really important. That he was gay was really important. He was one of the first cracks in the queer-people-are-evil-and-also-to-be-pitied wall that my parents had built in my mind. The start of thinking that maybe the Church might not be the only arbiter of how to live.
George Michael was a slut. He worked out his sexuality by having sex with people. He was non-monogamous. He didn’t apologise for any of it. In retrospect, he was a pretty much perfect example for baby queer me.
So, goodbye George. Thank you for the music. And thank you for everything else too. These tears are for you.
We’re all supposed to live in our own little echo chambers these days, so when I posted this tweet yesterday, I really wasn’t expecting it to be at all controversial.
When you get down to it, fancying people based on their assumed genitals is actually pretty creepy. #bisexualfridgethoughts
— Charlie (@fearlessknits) December 11, 2016
Of course, it didn’t get controversial on twitter, because my twitter is a well crafted garden of superb people. It got weird on facebook, where I cross posted.
I mean, to my mind, there’s not really anything controversial here. It is creepy to make assumptions about other people’s junk. Given that we live in the world of the ‘trans panic’ murder defence, maybe that was a little optimistic, but as I said, I was posting in my echo chamber. I was expecting lols.
So, for the avoidance of doubt, here are some things that are and are not creepy:
- Liking to look at pretty ladies
- Liking to look at handsome gentlemen
- Only wanting to have sex with people who identify as women and have a vagina
- Only wanting to have sex with people who identify as men and have a penis
- Being in one of the above two groups, finding out that your hot date doesn’t fit into the category you find attractive, and saying, ‘I’m afraid I’m not attracted to your body now that I know that. I’m so sorry. This sucks.’
- Asking people about their genitals before it becomes relevant
- Putting the genital configuration(s) you find attractive on your dating profile
- Reacting with anger when someone discloses their genital configuration and you discover that it’s different to what you assumed
- Saying that someone who is dating a trans person cannot be monosexual because of their partner’s genital configuration and that if they say so they are lying
- Generally in any way making or acting on the assumption that a person’s gender presentation or gender identity must necessarily require a particular topography in their pants
I mean. I don’t think it’s that hard. Just don’t be a dick about whether or not someone has a dick.
Oh the Labour party. I am a new member, and I am bitterly disappointed.
I didn’t want there to be a leadership contest, but I finally joined in the immediate aftermath of the Brexit vote. I joined because I was worried that if there was a contest for the leadership, they might not let people join to vote after it had started.
That went well.
So, there’s going to be an election. And I can’t vote. Can’t afford it.
But there is at least the appearance of one good thing, in that the challenger, Angela Eagle, is a woman and not straight. (White. You can’t always get what you want.)
Except there’s a straight white dude all of a sudden. Owen Smith, whoever the fuck he is. Who has to reassure people that he’s normal, presumably so people don’t get the idea that lefties or women or ‘the gays’ could be anything but a token or a short lived aberration.
And lo and behold, a few days after Mr Boring Right Wing White Guy turns up, a deal is done, and even the token is gone. Despite the fact that she took all the media flak for a solid 3 weeks. I don’t like her, I don’t like the fact she didn’t have anything to say, or any apparent politics, but at the very least she should have been allowed to finish what she started.
Even in 2010 when Diane Abbott ran, she was allowed to stay to the end. It’s telling that, even though she’s a better speaker than him and their politics are very similar, it took Jeremy Corbyn, a straight old white guy, to win from the left. And even then, the decades-old short-lived relationship between Abbott and Corbyn is used to smear both of them; he accused of helping her out and she of using him to climb. As though Diane Fucking Abbott isn’t capable of twice her highest office without any pale male support.
So Labour, I have joined. Because our country’s political system makes it all but impossible for change to the left to happen any other way. But don’t take my membership money as praise. Don’t interpret this as a blessing on your current configuration or attitudes.
Your shit is fucked up.
In case you didn’t guess from the title, I’m gonna be talking about the process of engaging with the DWP whilst very ill and how badly it sucks. If you’re fragile around this stuff, take care when reading.
I’m currently in the process of my second application for PIP. I last applied in April 2014, and it took them until August 2015 to lie their way to deciding, despite all the evidence I gave them and the incredulity of everyone I’ve told about it, that I deserved zero points and no money.
This time I’m doing the whole application through my local Citizen’s Advice Bureau. I contacted them at the first opportunity, and requested a home appointment to fill in the form, but they couldn’t fit me in, so this morning I had to get up two hours before my normal wake up time, take two buses, and spend a very long time going through the most private, painful, and embarrassing details of my life to try, for the second time, to get some of the support I am entitled to.
So. Up at 8am. Lots of coffee. Out by 9.15. appointment at 10.
The appointment was supposed to take two hours. The occupational therapist I see at the CFS/ME service isn’t happy for our 45 minute appointments to happen without a 5 minute break in the middle. And I ended up being there until almost half past one.
Tom was able to be with me until 11.30am, but then had to leave due to our ongoing washing machine saga. (Seriously Indesit, it’s been three weeks. We have lots of dirty clothes!) By the time he left I had already had to move off the chair to sit on the floor due to fibromyalgia pain.
Shortly after Tom left I stopped being able to speak properly and had to start singing my words.
At 12.00 I was able to take additional anti panic medication over and above my standard daily dose.
That was also about the first time I burst into tears without really even knowing why.
At about 12.25 I started playing a number game on my phone to try and stem the rising panic. It worked for a while.
I was still singing my words. The CAB worker told me about his choir to try and calm me down.
Side note. He was really fabulous. Like, really good. Stayed remarkably calm for all the weird and ill I was throwing around all over the place. When I said I’d had input from rape crisis checked immediately if I wanted him to hand over to a woman. Told me about his choir when I was crying rather than get upset or annoyed or expecting me to be able to carry on before I’d stopped crying. So mega huge thanks to the CAB for being awesome.
But there’s only so much you can do to mitigate how awful this process is.
So yeah. Still can’t talk. Singing my words.
A little before 1pm I get another crying jag. After that I can’t even sing anymore.
I start pointing at previous paperwork, and typing on my phone.
We finally finish the form. It takes me a full two minutes to sign, print and date because my hands are shaking so much.
He goes to photocopy All The Things. I fall asleep leaning against the wall. When he comes back I slap my face to wake myself up and his mask of calm cracks for the first time. I’m too tired to cry again.
They call a cab for me and it comes. While getting in I fall. I felt the bruises forming on my knees, elbow and shoulder, but only noticed the ruinous tear in my top later. Tom met the taxi and after crawling and head butts from the dog, I am home.
So. Something like this, a day like this, is undoubtedly traumatic.
My care plan went out of the window. The support structures and carefully calibrated limits of everyday life as a seriously and permanently ill person just can’t survive contact with the intense requirements of the ‘How Your Disability Affects You’ form.
Today was awful. But it’s not unusual.
To be ill and in contact with the DWP is to be constantly retraumatised.
On Monday I got a text message reminding me to complete and return my form. As if I could forget.
When I got home there was a letter from the DWP reminding me to complete and return my form. As if I could forget.
This kind of thing happens again and again, and there is always another battle to fight. Trauma on trauma.
The ill and disabled are being repeatedly traumatised and made more ill in an effort to spend less money on them as a distraction from giving more money to people and organisations that can buy nice lunches for politicians.
I don’t even know what I’m trying to say with this post. Except that this is happening, all around you, every day.
I’m so tired.
You might be forgiven for wondering what all the fuss even is about the Panama Papers. Over the last decade we have lived through increasing evidence that money isn’t even a real thing. Tyler Durden’s ideas from Fight Club, where he preaches that money is just a number on a computer screen, are easy to believe.
But money does matter. And it is real. Kind of.
Because money, although in itself just an idea that we’re all forced to live with, does represent something very real. Work. Money is the way that we keep track of work.
We know this because we never exchange money for money, not really, we only ever exchange money for work.
For hours spent in a field, in an office, at a factory, in a mine, behind a till, on the road. The cash we use to pay for things only exists because, at some point, somewhere in the world, for some purpose, one human being did something that another human being wanted.
Before we had money, we bartered. We would do a straight swap. This much grain for these many sheep. And broadly speaking, the thing that was equal there was the number of hours work each group of stuff needed before that swap.
This is why we pay lots for books, but little for stacks of plain paper – the book represents more hours, because it had to be written and checked and edited and so on. Both the book and the stack of plain paper also represent hours of work in tree logging, wood processing and paper making. But, per page, the book is (or should be) more expensive.
Each pound or euro or dollar or yen represents an amount of work that has been done.
And this is why money offshore and in tax havens matters.
James Henry of the Tax Justice Network said yesterday that there is “At least 21 to 32 trillion [US] dollars of individual private wealth offshore.”
Let’s take the low figure – $21tn.
If we write it out long form, that’s $21,000,000,000,000.00.
Which is a staggering amount of money. If you divide it up, that’s $3,000.00 for every person on Earth.
Looking at that, it can be easy to just stop there, and think of the $3k figure as something that can just help us understand what a huge number 21 trillion is. But it’s not just a huge number. Because every one of those 21 trillion US dollars represents an amount of work that has been done.
Now. Let’s think back to the barter example. The farmer and the shepherd exchanged their grain for sheep. They didn’t need to keep track of it for later, because it was a straight swap. They only need money if the farmer wants the sheep, but the shepherd doesn’t want anything from the farmer. The shepherd then needs an OIU from the farmer that he can give to someone whose stuff he actually wants. This third person can then go to the farmer and say that they want the grain the farmer would have given to the shepherd. Money is just easier.
You might notice something though. In the above example, the IOU doesn’t exist for very long. Everyone gets what they want quite quickly, and the IOU doesn’t hang around for ages, with the farmer wondering how long he has to keep a few sheep worth of grain around in case someone walks up to his front door tomorrow with the IOU.
We have $21tn worth of IOUs sitting in savings accounts. Savings accounts that don’t just not belong to governments, but are all but out of the reach of governments. That money is locked away. (Although hopefully not forever.)
This means that for every person on the Earth, there are $3,000 worth in hours of work that should be waiting to walk up to their front door.
In the UK, $3,000 is about £2,000. For my husband, that’s two months work after tax.
If we scale that up for the number of people on Earth, that’s 1.167 billion years. That’s a quarter of the way to the death of the Sun. That’s a lot of work.
It gets worse though, because the UK, relative to most of the world, has high pay per hour.
The UN says that about 20% of the world’s population, 1.2 billion people, live on less than $1 a day. Three thousand days is eight years and two months. Without weekends. I don’t even want to think about how many lifetimes of the Sun are owed to the people of Africa.
Money that is moving is being useful. While it’s moving, things can get done. People do work, and have work done for them in return. But when you put money to one side, it stops being useful. It sits like water in a bog. It goes bad.
If we look around us, pretty much anywhere in the world, it is possible to see work that needs doing that is not being done. Usually because somewhere along the way, there isn’t the money to do it.
What the Panama Papers are very clearly showing us is that there is the money to do it. That money exists. But with the help of politicians and tax codes around the world, that money has been allowed to go stale in private offshore accounts.
We need that money. We are owed that money. Not because we want to keep it ourselves and become the new dragons, but because of the work it represents.
There is so much around us that needs to be done. So many people who need help. So many ecosystems at risk, both evolved and engineered.
As a planet, we just can’t afford to have that much potential work, potential good, sat around on computer screens in tax havens, going stale.
Over the last week or so, I’ve noticed a lot of news about the Zika virus. And as a person with a womb who has worked in neonatal care, the effects and the risks are terrifying.
The prospect of having a child who is largely or entirely dependant on care for the whole of their possibly short lives is daunting. Sometimes disability is unavoidable, and those affected (like myself) should obviously be loved, cared for, and encouraged to live as fully as they can.
But to know that disability is preventable, and to know how to prevent it gives us, I believe, an imperative to do all we can to give parents and children the best start in life.
So. Here are a list of charities, organisations, and campaigns that are helping to prevent microcephaly and at risk pregnancies across the affected regions.
I have focussed on pregnancy and abortion because the search for a vaccine will, I believe, be the more high profile issue. I don’t want those at risk of pregnancy, miscarriage, or whose foetuses are at risk of microcephaly, to become collateral damage. They are not a way of keeping score or tracking the scale of this disease.
1. Women on Waves (CN: website uses gendered language)
Women on Waves are a charity who provide medical abortions within the first 9 weeks of pregnancy. They are providing free medical abortions to those who can prove they have been infected with Zika. You can donate here.
2. Umm, well there isn’t a number 2.
Really. One organisation is all I could find offering abortion services to those at risk of a Zika affected pregnancy. And no one offering contraception.
If you know of any other organisations that should be added to the list, put them in the comments and I’ll add them to the post. Please.
There is, of course, plenty of noise from people wanting to persuade governments to change their policies around contraception and abortion. But that’s long term stuff, and doesn’t help those at risk, who need it now.
So please. Share this post around. Women on Waves (also known as Women on Web) have been getting quite a bit of press, but I’m sure they won’t mind more donations.
And if you are in a position to start an organisation or campaign to provide contraception and abortion services now to those at risk of a Zika affected pregnancy, please do so! I will publicise the shit out of you, and I won’t be alone.