On the year 2012, Alberto Gallardón, the Minister for Justice for Mariano Rajoy, the President of Spain, proposed to change the abortion law in Spain.
Before I can continue talking about this, I should give a quick primer on the history of abortion legislation in Spain. From 1822 to 1937, abortion was illegal in Spain. Then, during the Second Republic, it was legalised for less than a year by the Republican Government. Once the fascist dictatorship of Franco took power, abortion was illegalised completely. In 1985, 10 years after the death of Franco, a law was passed that a pregnant person could have an abortion under one or more of three conditions: if the pregnancy was a result of rape, if the foetus showed evident signs of malformation or if continuing with the pregnancy presented grave danger for the physical or psychological health of the mother. This law was similar to the law in the UK, and many women were able to abort by obtaining confirmation that having a baby would negatively impact their psychological health.
In the year 2010, the socialist government of José Luis Rodríguez Zapatero legalised abortion during the first 14 weeks of pregnancy, independently of any 'cases'.
Establishing this history is important to understand why Gallardón, the Minister for Justice of a government controlled by the Partido Popular (PP, the Popular Party) wanted to change the law. He wanted to go back to a law of cases, and not even a law equivalent to that of 1985, but an even more restrictive law that would only allow abortions if the woman had been raped or if the pregnancy could be a grave danger to the live of the woman or to her psychological health. This meant that if the foetus had grave malformations, the only way to have an abortion would be to claim that having a baby with those grave malformations would cause severe psychological damage to the mother.
This law was never approved, and currently women in Spain are free to have abortions for any reason whatsoever up to teh 14th week of the pregnancy. However, the proposal of this law led to an important discussion about morality and rights, about discrimination and about how we discuss these matters, particularly in the public arena.
The discussion was centred around people with Down's Syndrome, possibly because this was the most visible group affected, and it was regarding the case of abortion when the foetus has a severe malformation.
According to the 1985 law, if the amniocentecis test showed that the foetus had a trisomy in chromosome 21, the genetic mutation that leads to Down's Syndrome, a woman could abort that baby under the case of gross malformation. The project for law proposed by Gallardón removed this case, arguing that people with Down's Syndrome (and with many other innate conditions that are not life threatening) also had the right to live, that they could live full lives, that families who had children with Down's Syndrome loved these children (this argument is ridiculous of course, how could they not love them?), and therefore, the case of gross malformation should be eliminated.
Of course, we could say that there are different cases of gross malformation. There are cases where it is almost certain the child won't live, and even if they do they will be in a lot of pain (cases of anencephaly come to mind), and there are cases of small physical deformities which may not even hinder the person bearing them. A law could perhaps be written treating each of these cases, or it could be left up to doctors to decide, but this is not the purpose of this text.
The purspose of this text is to discuss when a 'condition' no longer becomes a 'condition', and it just becomes the way someone is. I want to discuss how we think of illness (especially innate illness) and disability, and when these words lose meaning for the people we insist should bear them.
Let me explain. A few months ago I was working at the Node, a website for developmental biologists, and I came across Diana Bianchi, a researcher into early testing for Down's Syndrome and cures for the disease. You can read the profile I found about her here. In the profile, the story of Jerome Lejeune is mentioned. He is the man who discovered that a trisomy in chromosome 21 was responsible for Down's Syndrome, but he regretted his discovery when he found out that it would lead to prenatal testing and abortions. Diana Bianchi has continued to do research into prenatal testing, and has been severely criticised by people with Down's Syndrome and their families: more prenatal testing will mean more abortions of people with Down's Syndrome. But Biancha is also looking for cures, for treatment of Down's Syndrome in utero.
And here is where the question really lies. Should we treat Down's Syndrome? It is not a trivial question. For someone healthy, like me, it seems that the obvious answer is yes, and perhaps this answer would be the same for a lot of people who have suffered because of Down's Syndrome. But what about all those people with Down's Syndrome or who have a relative or a friend with Down's Syndrome who wouldn't change it for the world? Do we have a right to treat these babies before they can even choose to be treated?
It all comes down to whether every condition needs a cure. Whether we all need to be the same. What we call healthy, what we call unhealthy. Whether we all have the right to decide over our own bodies or not.
I'm not claiming to have an answer for these questions. I believe that if I got pregnant with a child that was not going to be 'normal' (whatever that means), and I was offered treatment, I would probably take it, and that if there was no treatment I might well have an abortion. But I should accept that that decision is discriminatory, that it does not take into account the will of the future person, and that it is not an easy moral ground to navigate. I need to accept that in deciding that a person is not 'normal' I am setting lines, us and them, and these lines are not insignificant and that they can be dangerous. And we need to talk about it. There needs to be open dialogue about these matters because not everything is black or white and sometimes decisions are hard to navigate.
Tuesday, 7 June 2016
Wednesday, 1 June 2016
After midnight
Punishing the poor is the way forward. It always has been.
After midnight, the surreal sets in. Apparently rowing means that all nighters aren't quite what they used to be. Where's the coffee and the coke? No Red Bull for me, never could stand the stuff, except when that guy who lived in a loft in New York was buying us Jäger Bombs and drinking them and listening to his stories about polyamory and excess were the cheapest way to get drunk. Do you remember that night?
The library lights strangely on, and the sensors can somehow tell I'm here, even though my only movement are my fingers sliding across the keys; will someone review my salary please? Connections, connections. A dead mouse in the salad and Leicester City winning the Premier league somehow all result in me being here today, writing this. Can you tell?
It's dark outside, but at least it's not raining, or I don't think it is. Should I go home? The story is eternal and the questions are endless, but worry not, we'll give it our best shot. Become lonely cowboys... will we be lonely if we have each other? I never wanted to be a cowboy. Maybe an astronaut. For some reason, as much as death terrifies me, dying lost in space would somehow be meaningful. Have your body keep moving for minutes, days, weeks, years. Maybe for all eternity, or maybe just until it was pulled into a mysterious planet, maybe one with shallow seas, where the ancestors of the ancestors will slowly decompose me, not knowing, never knowing. Do bodies decompose in space?
I have a story about a girl who loves her brother who hates her. How can I write that? I have no brother. I am not a girl anymore. I do not understand fire, though maybe I do understand water. Who writes our stories? Who will write them if we don't?
Do you believe in... anything? Starts and space, that's all, but do you even believe in those? Do aliens terrify you? What does it mean most science fiction is bad?
I've been listening to the same five songs on loop for the past 10 hours or so. I can't say I'm bored or annoyed by them. They have become as familiar as the silence, as the sound of the keyboard or the fluorescent lights. The songs are home, a space that is mine and that only a few may understand. What is home? Home. Home. Home.
The story goes like this. It always goes like this. It starts and it continues and you only realise by the time it's too late, it's gone and there's nothing you can do to change it. Do you wish you could have changed it? Could you have made it better? I can breathe. I can walk and eat. I can sleep, but maybe not tonight, sleeping tonight would be wrong, it would be more reasonable to stay awake, sleep tomorrow, or after, or hereafter, or never, never sleep. Dreams are for fools and life is for dreamers. Hope is inevitable, the last frontier, the last thing we lose. The last thing one loses.
Technical tehcnological tehcnicalities actually actualise. Technical, tehcnological, technicalities. Technically technical. Techtonical? Achaete. A word. The Scripps spelling bee. A bee, on a flower, buzzing happily in the sun until the child swats it, hard, with its open hand, smiling, happily enjoying its own cruelty. It doesn't last. The sting shocks and then hurts and joy turns to fury and pain and the other child smiles cruelly, taking revenge for the bee in some twisted way. Because children are honest and twisted. Twisted, twisty, two. Two. Two, two, two. Take it or leave it. Do we kill the ones we don't like? Or just banish them and let them die on their own? Will cruelty be allowed?
Arched. Old. Ancient. Pillars. Climbing. A hill. Steak. Always with the protein. Too late. And it emerges slowly, humming quietly if such a thing is possible, holding the tune effortlessly, even though it is the only impossible song, the one that took us by surprise and separated us and destroyed us and sentenced us to never meet again and made us feel like we had lost something. Have you lost something? Is it better to be alone or to be hurt? Are those the only options? The story continues.
A man ties his shoe laces. He has left his cane next to his right leg, which is bent in a right angle, in front of him. He is kneeling on his left leg, therefore. It is the laces on his right shoe that he is doing. Is he blind? Maybe that's why he has the cane... but he picks the laces so deftly, surely he cannot be... but then, the child is able to tie its laces without looking, just by feeling the white and the plastic and edges. Edges. What is the edge of a line? The edge of a point? Long long long long long long long long long. We live with phones dying but hate it when we die ourselves.
Emerge lightly. Tell the story you came to tell, or another one, it doesn't really matter. The rest of them are only here to listen, and the content doesn't really concern them. That's His concern, maybe, if He wants to make it His concern. Who is He, you ask? Nothing but a man, someone who believes in himself.
After midnight, the surreal sets in. Apparently rowing means that all nighters aren't quite what they used to be. Where's the coffee and the coke? No Red Bull for me, never could stand the stuff, except when that guy who lived in a loft in New York was buying us Jäger Bombs and drinking them and listening to his stories about polyamory and excess were the cheapest way to get drunk. Do you remember that night?
The library lights strangely on, and the sensors can somehow tell I'm here, even though my only movement are my fingers sliding across the keys; will someone review my salary please? Connections, connections. A dead mouse in the salad and Leicester City winning the Premier league somehow all result in me being here today, writing this. Can you tell?
It's dark outside, but at least it's not raining, or I don't think it is. Should I go home? The story is eternal and the questions are endless, but worry not, we'll give it our best shot. Become lonely cowboys... will we be lonely if we have each other? I never wanted to be a cowboy. Maybe an astronaut. For some reason, as much as death terrifies me, dying lost in space would somehow be meaningful. Have your body keep moving for minutes, days, weeks, years. Maybe for all eternity, or maybe just until it was pulled into a mysterious planet, maybe one with shallow seas, where the ancestors of the ancestors will slowly decompose me, not knowing, never knowing. Do bodies decompose in space?
I have a story about a girl who loves her brother who hates her. How can I write that? I have no brother. I am not a girl anymore. I do not understand fire, though maybe I do understand water. Who writes our stories? Who will write them if we don't?
Do you believe in... anything? Starts and space, that's all, but do you even believe in those? Do aliens terrify you? What does it mean most science fiction is bad?
I've been listening to the same five songs on loop for the past 10 hours or so. I can't say I'm bored or annoyed by them. They have become as familiar as the silence, as the sound of the keyboard or the fluorescent lights. The songs are home, a space that is mine and that only a few may understand. What is home? Home. Home. Home.
The story goes like this. It always goes like this. It starts and it continues and you only realise by the time it's too late, it's gone and there's nothing you can do to change it. Do you wish you could have changed it? Could you have made it better? I can breathe. I can walk and eat. I can sleep, but maybe not tonight, sleeping tonight would be wrong, it would be more reasonable to stay awake, sleep tomorrow, or after, or hereafter, or never, never sleep. Dreams are for fools and life is for dreamers. Hope is inevitable, the last frontier, the last thing we lose. The last thing one loses.
Technical tehcnological tehcnicalities actually actualise. Technical, tehcnological, technicalities. Technically technical. Techtonical? Achaete. A word. The Scripps spelling bee. A bee, on a flower, buzzing happily in the sun until the child swats it, hard, with its open hand, smiling, happily enjoying its own cruelty. It doesn't last. The sting shocks and then hurts and joy turns to fury and pain and the other child smiles cruelly, taking revenge for the bee in some twisted way. Because children are honest and twisted. Twisted, twisty, two. Two. Two, two, two. Take it or leave it. Do we kill the ones we don't like? Or just banish them and let them die on their own? Will cruelty be allowed?
Arched. Old. Ancient. Pillars. Climbing. A hill. Steak. Always with the protein. Too late. And it emerges slowly, humming quietly if such a thing is possible, holding the tune effortlessly, even though it is the only impossible song, the one that took us by surprise and separated us and destroyed us and sentenced us to never meet again and made us feel like we had lost something. Have you lost something? Is it better to be alone or to be hurt? Are those the only options? The story continues.
A man ties his shoe laces. He has left his cane next to his right leg, which is bent in a right angle, in front of him. He is kneeling on his left leg, therefore. It is the laces on his right shoe that he is doing. Is he blind? Maybe that's why he has the cane... but he picks the laces so deftly, surely he cannot be... but then, the child is able to tie its laces without looking, just by feeling the white and the plastic and edges. Edges. What is the edge of a line? The edge of a point? Long long long long long long long long long. We live with phones dying but hate it when we die ourselves.
Emerge lightly. Tell the story you came to tell, or another one, it doesn't really matter. The rest of them are only here to listen, and the content doesn't really concern them. That's His concern, maybe, if He wants to make it His concern. Who is He, you ask? Nothing but a man, someone who believes in himself.
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