29 Apr 2017

"We Didn't Have Autism In My Day"

If you browse articles on autism, or follow any social media discussion on it, someone will show up and tell you that autism is new. This someone will usually be a 50+ bloke, who thinks it's all a load of old codswallop; poor parenting, too many chemicals in foods, vaccinations, labelling every kid who's a bit odd. Autism is new. Autism is a new invention that doesn't really exist, except in the Rain Man savant stereotype.

Autism isn't new. Autistic behaviours have been described in individuals going back at least 500 years. Just as epileptics were considered possessed by the devil, autistic people were considered soulless demons. Until relatively recently, disability was widely categorised as deaf, blind, crippled or imbecile/insane/feeble minded. Autistic people were broadly defined as mentally subnormal, where it obviously disabled them, and weird or criminally insane where it was less disabling. It was formally discovered and named almost simultaneously by Hans Asperger and Leo Kanner separately in 1938 (hence the confusion between Aspergers syndrome and Autism - they are the same disorder, described slightly differently by two people on different continents at the same time). Autism was initially thought to be the result of distant parenting, and was classified as "infant schizophrenia" until the 1980s. This idea of autism being the fault of parents, or a psychiatric disorder, still resonates in public discourse. But autism is not a psychiatric disorder, although it is usually grouped as a mental health condition - it is a pervasive developmental delay, pervasive because the person cannot 'grow out' of it. One significant change in the last twenty years has been a fine-tuning of diagnostic methods, which has enabled more subtle cases to be differentiated, diagnosed and helped. I know several adults who have discovered, sometimes to their great dismay, that they score highly on autistic diagnostic tests - the stereotype of the mute, asocial autistic person is not really accurate now. 

I read a comment from a man on twitter who said that there was nobody autistic at his school, and he was 37. I am five years younger than him and I went to a large primary school, and a large secondary school. There was at least four autistic people in my primary school yeargroup and many more in secondary school. Once you have an autistic person in your life, you begin to recognise the signs in others, but when you don't know the signs, you just think they're weird. The autistic people in this man's school would be the ones who were bullied, the ones nobody hung around with because they were strange or said the wrong things, the ones who never went to birthday parties, the ones who were regularly out of class, the ones who turned up for two terms and then disappeared. Jimmy's classmates know and broadly accept that he's different, but they don't necessarily know he's autistic - autism isn't a common word in an 8 year old's vocabulary. Autistic children are supported more obviously in mainstream schooling now, and there is far more help available if you qualify for it. 

But formerly, the only real option for autistic children was residential institutions. 

For those of us born in the last forty-ish years, institutions are a distant spectre. Huge Victorian asylums still stand in most towns, often converted into flats or hospitals, the residents broadly unaware of their history. But for our ancestors, institutions were a normal, if feared, part of life. If you had an obviously disabled child, you were encouraged to send it to an asylum as quickly as possible. Autism isn't usually apparent until toddlerhood at the earliest, but children were still sent away to residential hospitals. Parents were not encouraged to visit - a relative of mine was put into an asylum in early childhood because she had Downs syndrome, and lived forty miles from her parents. Her mother visited once a week until her death aged 13, in 1952. This is recent history. In the 1980s, the people who had lived in institutions for most of their lives began to be released as part of the Care in the Community Act. Many ended up in sheltered housing, having never been taught the skills to live independently. The issue with living in an institution is that you become institutionalised. Ironically, this rather suits autistic people, although it has the potential for horrific abuse. 
If Jimmy, my beloved eldest boy, had been born in 1949 instead of 2009, he would have been institutionalised by now. He would be living on the site of the old District hospital, in the vast Victorian workhouse and asylum complex that has been completely redeveloped. He would be considered dangerous and insane. 

Autism is not a new disease, and the reason older people claim they didn't have it in their day is because it was hidden away, concealed behind huge walls and gates, in stigmatic buildings, buried under sedation and restraint. There should be no pride in claiming autism wasn't around in the good old days - it shows how invisible and suppressed disability was, and how uncomfortable it makes some people that it's now 'mainstream'. 

28 Apr 2017

Tax Credits

So, I signed the petition to repeal the 'rape clause' that forms part of the tax credit policy now. And today, I received a government response which amounted to "you should have complained about this eighteen months ago, tough shit". But one paragraph absolutely INCENSED me:


"Families supporting themselves solely through work" are either not claiming the tax credits they are entitled to, or earning more than the income threshold (£25000 for one child, £35000 for two). Look at those thresholds: they are Quite High particularly as the average annual income is £27000. The vast majority of working class families qualify for tax credits. Remember the 'hardworking families" trope? That's them.

"do not see their incomes rise automatically when they have more children". No, but by earning more than the income thresholds for tax credits, they already have a considerable scope for a much higher income. Two children on £35000 a year is very different to two children on £45000 a year. There are always people who fall into the cracks of being just over the threshold, but frankly if you struggle on £36k p.a. with two children (as one who has been doing so on much less for years) learn to budget better. A great deal of necessary public sector jobs have low and locked in salaries - an MAU staff nurse in Peterborough can expect a starting salary of between £22 and £24k; a newly qualified teacher's income is capped at £22k in their first year - which automatically classifies them as both poor and according to this government, an idiot with no idea how to control their fertility unless you threaten them financially.

"The policy encourages families who receive benefits or tax credits to make the same financial decisions about the number of children they can afford to support as those families who support themselves solely through work"

WHERE TO FUCKING BEGIN? The fucking PATRONISING language - "we ENCOURAGE the IDIOT POOR PEOPLE to STOP BREEDING". The whole idea that Only Rich People are sensible enough and rich enough to have more than two children. The idea that people have children for tax credits - yes, the difficult pregnancy, birth and eternity of care I invested in my third child is definitely worth the £50 extra a week. And separating those who claim tax credits - 4.43 million households out of approximately 18 million in the UK at the last ONS count - from those who don't need to as though that is a fair and just way of dividing the nation's fertility choice. Previously, those who were on income support or JSA were the Undeserving Poor of the nation. Now, apparently, it's to be extended to anyone on a low income regardless of how much they work or what classification of job they have.

"while protecting the vulnerable by retaining extra support for families with disabled children." DON'T MAKE ME FUCKING LAUGH. I have a disabled child, and believe me, I had to TAKE THE DEPARTMENT OF WORK AND PENSIONS TO COURT AND THEN THREATEN TO DO IT AGAIN to get them to pay the money rightfully owed to my disabled child. They don't give a single solitary fuck about disabled children.

None of this stops me or anyone else from having thirty two children if I want to, but the fact is that most low income households have included tax credits as part of their forecast income when deciding to have more children, and now they will have to stop doing that. There is an uncomfortable element of eugenics inherent in this policy that reminds me of the Victorian era when it was widely believed that poverty and poor moral behaviour were genetically linked. Stop the poor people having loads of kids and maybe there won't be any more poor people to worry about! Never mind fixing the causes of poverty and social inequality, just financially sterilise them!

But for a whole host of women, this family cap is going to be a real fucking issue. You see, it is applied to children born after 7th April 2017 and to "any new claims". So, if your circumstances change in the near future, and you suddenly find yourself applying for tax credits for the first time, little Imogen the Third Child won't be counted. If your partner moves in, or out, that counts as a new claim, so you may be absolutely fine now as a single parent of four, but if your boyfriend moves in, you will suddenly find two of your children are apparently not eating all your food, requiring clothes, using energy etc.

My situation six years ago was nothing uncommon - boy meets girl, boy marries girl, boy impregnates girl, boy fucks off without a backward glance. I only had two children when I was dumped, but had it been another two years down the line, it could have been three. We could have easily afforded three children - indeed, we both now have three children - but I cannot stress enough how terrifying it was to suddenly lose 4/5s of my household income. My monthly wage didn't cover the mortgage, nevermind anything else. I relied on tax credits. Nobody should have children they cannot afford, but having children when you can afford them does not act as insurance against any financial or personal misfortune in the future. Women with more than two children in abusive relationships will have to think long and hard over whether they can afford to leave their partner.The Tories have also cut bereavement benefits, so if your husband or wife dies leaving you with more than two children, you are doubly fucked.

It will be women who suffer the most through this tax credit amendment. Two million lone parent households exist in the UK - that's just under half of all tax credit claims - and 91% of them are headed by women. Not only do women suffer the brunt of single parenting, they also have this fucking rape clause bullshit to overcome, where their third child only gets benefit if they are a product of rape. Never mind marital rape, never mind the ethics of being obliged to report your rape just to secure a little extra money, what sort of fucking government decides the only reason a poor woman might have more than two children is because she was raped?

It is a toxic, classist, eugenic and misogynist amendment and I loathe it and the party that instituted it with all my heart and soul.

24 Apr 2017

Bread and Wine

Communion smells of red wine. Of the resurrection and the life to come.
Communion smells of red wine. Communion smells of Mum.

Six days before Mum died, some of us gathered at her bedside and the vicar came and did Communion. I didn't know they did that, but they do. She brought the wine and wafers in an ornate box, and we sat on an odd assortment of pews and we prayed together. Mum, by that point, was quite beyond conversation. She was confused, she had terrible shakes, she was in pain. We did not know if there was much point in Communion, except that Mum wanted it. Before her illness got so severe, God became more important to Mum than ever. Many would lose their faith in the face of suffering. Mum's got stronger. She did not fear death because she had great faith in what was to come, and the suffering was part of that. She believed in the cleansing power of pain. Mum saw nothing unnatural in dying, nothing unusual in it. She did not pity herself. She enthroned herself in life.

I digress. We sat by Mum, and we had Communion, a short form. And Mum, unable to swallow, swallowed the bread, the wine. And she knew all the words, she mouthed them along with the vicar as she shook and spasmed and faded away. The words she'd spoken every single Sunday as a child, and as many Sundays as she could as an adult were deeply embedded in her consciousness, away from the pain and the toxicity. She knew.

The vicar made arrangements to return the following week, but was about twelve hours too late.

I could not bear to go to Communion again. I could not bear to break the last covenant made with my mother.  I could not bear to speak the words, to go to the altar and taste the bread, the red wine. I could not bear to sit there alone, without her. I could not bear the pain.

But Easter came round and I knew exactly what Mum would say to that. She would call me a bloody heathen and harumph and judge as she busied herself with cooking. Not going to church on Easter Sunday may not get you excommunicated anymore, but as far as she was concerned, it bloody well should do.

So I went. And the claims of eternal life and resurrection felt hollow. Death has not lost its sting. Heaven feels far away.
And an old woman was ill during the sermon. I took her pulse. It felt wrong. I told her husband to call a doctor. I sent her home. I had no authority to do any of those things. I just did. Someone had to. I don't know if she died. That would be a bitter irony.
And then it was time for Communion and I went to the altar, and I tasted the wafer. It stuck in my throat, dry and fresh for Easter. I sipped the red wine. It tasted of Mum, and life, and death, and alcohol first thing in the morning.

And I broke that small link between me and Mum and I cried.

Because grief does not stop with the funeral. Grief does not stop with the seasons. Grief does not know how many days, weeks, months it's been. Grief is a tidal wave, every single thing resonant with meaning. Grief is frightening. People who are not grieving fear it, they shy away from it because they don't know what to say. They don't know what will help. They have not learned that nothing helps except time, but time itself feels like aeons of pain. I am afraid of a life without my mum. It has been almost six months and I am still so afraid, afraid to live and to keep going. I have so much to tell her and she cannot reply. I am scared I will falter without her guidance. I am scared I will fuck up.

I work. I look after my kids. I study. I try and see my friends. I try and be normal. But I am marking time until I feel normal again, knowing it might never happen.

Taking Communion was one tiny step, with huge symbolic meaning. There are many more steps to take.

18 Apr 2017


So, there's to be a general election in less than two months. This is...unusual, but perhaps not unexpected.

The last general election was almost two years ago, and one of the myriad electoral promises made was that there would be a referendum on EU membership if the Conservatives won. This was a promise made partly to appeal to some Tory (and other party) MPs who were threatening to defect to UKIP, and to appeal more generally to UKIP voters. Despite a lot of hand-wringing about the possibility of a hung parliament and another coalition government, David Cameron won, Nick Clegg was told to sling his hook, and the possibility of a referendum loomed large.

David Cameron announced the EU referendum in February 2016, and it was held in May 2016. It was a dirty fucking scrum of a campaign, with the remain side not really bothering until it was too late, assuming that nobody would want to leave, and the leave side using racism, xenophobia and outright lies (often painted on the side of a bus), shrieking about democracy and sovereignty when challenged. We voted to leave, by 51.9% to 49.1%*.
Uproar. David Cameron resigned. The initial leadership of both the Conservative Party and Britain seemed to be Boris Johnson's for the taking, except he decided not to run (my theory: didn't want the shitty Brexit baton). His fellower Brexiteer Michael Gove ran, and came dead last. And so the race was left to Andrea Leadsom, who had little inter-party support and shot herself in the foot by suggesting women without children had no feelings, and we had a new PM with barely any fanfare. Theresa May. Former home secretary, supporter of the Remain campaign, first female PM since Thatcher. And Theresa May decided fuck it, she would go for a hard Brexit.

What is a hard Brexit? A soft Brexit? A buttery biscuit Brexit? Nobody seems to know, and considering that is what our country hopes to pursue in the next two years, it really is time someone came up with a fucking plan beyond "Brexit means Brexit". Instead, we have had Jeremy Corbyn enact a three line whip to make sure Labour agreed to trigger the Brexit process, the SNP announce another independence referendum for Scotland** and SHIT GOING DOWN in Northern Ireland, our only land border with the EU, which is worrying because we have a reasonably fraught relationship in general with Ireland and Irish independence. There have been eleven by-elections in sixteen months. Only the Lib Dems are offering any resistance to Brexit, so it's kind of a shame they only have nine parliamentary seats. UKIP have imploded, giving each other brain injuries and shouting about Douglas Carswell being a blood traitor, like they're fucking Dementors. It's been a trip.

Then there's the great fucking Wotsit over the sea trying to start a nuclear war with North Korea for shits and giggles.

The NHS continues to be underfunded, with staff at breaking point. Teachers are on the verge of striking again. Bereavement allowances are being slashed, because fuck knows the widowed need more hassle. Tax credits: don't even get me fucking started. Nobody can afford a house unless they're minted. Worker's rights are being gently eroded ready for the lifting of EU labour laws. It's a mess.

So, why call a general election now? Elections are expensive to run. They take a lot of administration. There's usually televised debates, which have normally been done by now. There was major election expenses fraud last time, which still hasn't been fully investigated. There's an act of parliament specifically to stop PMs calling a general election early. Why not just wait three more years and do it then, like everyone expects?

As it stands, the next general election should have been held in May 2020. The Article 50 protocol states that we should leave the EU by April 2019. Those two dates are quite close together, politically speaking. You, the voter, will remember quite clearly how fucking shit or amazing Brexit has made your life come 2020.

I expect that what Theresa May wants is a majority government without strong Brexit opposition to sail through the process, come out the other side and then bow out in 2022. I expect what Theresa May wants is for her government to stop bickering about the terms of Brexit, agree with whatever deal she can come up with, and crack on. I expect she wants to be elected by the people rather than just her party, so she can say she has been Chosen. I expect she doesn't want to have to fight an election the year after Brexit completes.

There was an awful lot of wailing immediately after the announcement that this will just make life easier for her. So don't. Vote. Vote for who you want to run your constituency. Brexit is happening unless the Lib Dems win by a landslide, so what we need is strong opposition to get us the best deal. Find out who your candidates are, and vote for the one who gives a shit: 90% of the time, it won't be a Conservative. There's a website here where you can see what your current MP votes for and against.

If you've recently turned 18 or will before June 9th, you need to register to vote. If you've recently moved house, you might need to register to vote. If you've recently graduated, you might need to register to vote. And since this election has been called with so little notice, you need to do that now: you can do it here. If you are a student, you are likely to be at home on June 9th - find out where you're registered to vote and apply for a postal vote if it's in your university constituency, and do it within the month. If you're going to be on holiday on June 9th, have a great time, but register for a postal vote first.

Young people, those aged 18-24, have the greatest stake in the future of the country, and they vote the least. So, boring as it can be, educate yourself and vote. Apathy changes nothing.

* Interestingly, this small victory has been quoted as a reason to pursue a 'hard' Brexit: when Erdogan won his own referendum by 51% to 49% in Turkey last week, this was described as "the smallest of margins" by the Torygraph no less. 

** When Brexiteers start complaining about this, I laugh and I laugh and I cry for their hypocrisy