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'My right to euthanasia'

The British MS-sufferer who went to court to try to ensure her husband wouldn't be prosecuted if he

“I was really upset,” said Debbie Purdy after judges in the High Court ruled against her. “Perhaps it was naïve of me, but I was absolutely convinced we were going to win.”

Purdy has Multiple Sclerosis (MS) and plans to go to Switzerland and have a doctor help her die when the pain gets to be unbearable.

She would like her husband to accompany her but is worried that he could face up to 14 years in jail under a law dating from 1961.

Ultimately, if she does not win her case she will go earlier than planned, when she still has the faculties to administer the drugs to herself and won't need to directly involved anyone else.

“We were only asking for clarity, not asking for anything grandiose.”

Now she's been granted leave to take her case to the Court of Appeal.

“It's been surprising how much interest there has been – journalists, neighbours, people on the train - who have come up to me and said, 'my aunt, my uncle, was in the same position'. Even on the train home from London, I met a lady with breast cancer. She said to me, 'I'm really glad you're brave enough to do this. I'm not.'”

“This has refocused my belief in humanity – we don't think only of ourselves. People are more than that – they have compassion and the ability to see others point of view.

“It's incredible, isn't it?”

Ultimately there needs to be a rethink at Parliamentary level but Purdy doubts politicians have the courage to confront this particular issue preferring to leave the battles to the courts.

“The law hasn't been looked at since 1961 – in that time medical, social and cultural advances have been huge,” she points out.

“I think it's cowardice on the part of politicians: they are scared they might lose votes.”

She doesn't think that politicians should influence how she chooses to die. “People should be trusted more to make decisions.”

Not all of her friends agree with the decision that she will eventually make to kill herself when the pain becomes unbearable. “A friend who is very religious and doesn't think it's the right decision said to me after the court case, 'I'm really disappointed for you, because it's your choice.'”

“Even my husband's not 100 per cent certain what he would do if he were in this position. It's a decision he would do everything to stop me making.”

He does however realise the decision isn't his. As Purdy says: “He's not the one who takes pain killers before he gets out of bed in the morning or is lying on the floor, calling to be helped to get up.”

Over 100 British people have travelled to Zurich to die and everybody except one was accompanied by friends or relatives explained Purdy. “Because of the law, it forced terrible decisions. Though no one's been prosecuted yet, one who accompanied someone to Switzerland was investigated for nine months. Somebody will get prosecuted unless we clarify.”

“Because my husband is black and he's foreign, if they're going to prosecute someone, it's going to be him, not some 70-year-old English woman. It's frightening to contemplate – I love him.”

Those who accompany those to die aren't the only ones who face possible persecution. Currently under British law it is illegal for doctors to offer counselling regarding assisted suicide. Purdy wonders, “How can we protect doctors? A doctor's first instinct is compassion.”

Purdy feels that having the ability to have an assisted suicide increases the quality of care. “Hospice care is great but it isn't right for everybody.”

In the US state of Oregon, where assisted suicide has been legal for 10 years, more than 300 people have used it to die. Purdy feels that the quality of care has improved there as “the number of patients dying from too many pain medications (which are often prescribed to those in chronic pain) has gone down.”

Purdy attended a discussion on the topic following the verdict of her case. “Some people suggested that this issue is statistically insignificant,” she said. “They [people who went to die in Switzerland] were vibrant, real people who didn't want their last months to be painful or degrading.

“Some think it's a theoretical, ethical discussion. But this is my life.”

Purdy disagrees with those who don't want to legalise mercy killings because they feel the law protects vulnerable people. Though she is in a wheelchair and has lost the muscular ability to open child proof tops, she doesn't feel that her disability has made her vulnerable. “I fall over on the floor a lot – it's annoying not undignified. That I'm referred to as a victim or vulnerable is undignified.”

“This sounds selfish but this is my life – there's not much I can do about the situation in Democratic Republic of Congo. I need to do what I can to make my life longer – and maybe contribute.”

Purdy says that changing the law would allow people like her who are in chronic pain to live worry-free knowing that they have a way out. “We need a safety net so we can walk on a high wire. If the pain becomes too much and if we are serious, not coerced, then we can ask for help to end our lives.”

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When heritage becomes hate: why my home town of Charlottesville needs to address its complex past

After an invasion of white supremacists, we need to see what our history means today.

Watching a tragedy happening in slow motion, without any way to stop it - that’s how it has felt to be from Charlottesville, Virginia in the summer of 2017. A city that used to always get voted “happiest town in the USA” when I was growing up was the target this weekend of an ugly white supremacist movement whose roots spread far from the city.

It was a huge surprise when we won the lottery of Nazi flags, with our stupid old statues that have become icons of international fascism, with a park named after a distantly forgotten old man becoming a site of struggle for an attempted racist coup of the United States. Our first reaction is: they aren´t from here. Our second: make them go away. Our third: a realisation we need to examine the way that our own ways of life, which we thought so harmless, have inspired such horrible feelings in strangers.

Maybe for my African-American classmates at high school the statue of Confederate general Robert E Lee, and the park when it was still named after him rather than Emancipation Park, always meant violence. Pulling the statue down says no more about the historical Lee than tearing down Lenin in '89 says about socialism. We've been invaded by people pretending to protect us from invasion, and the symbols of our past will never matter as much as living people do.

***

The invaders picked our town, probably, because Virginia was a confederate state, and was in fact where the southern gentry used to live. Lee exemplified this tradition. He was son of Lighthorse Harry Lee, a hero of the revolutionary war and governor of Virginia, and is a descendant of one of “Virginia’s first families,” the aristocratic Englishmen who emigrated to Virginia when it was a British colony. He is part of Charlottesville's heritage, and perhaps not even all that shameful a part. He opposed the secession of the confederacy, supported the reconstruction after the war, including giving rights to recently freed slaves. Not exactly woke, but for a confederate general, not as bad as some.

We were taught at Venable Elementary School that he fought only reluctantly, to defend his land, not slavery. In the version we learned, one would imagine Lee being very opposed to people from the Midwest coming to Virginia in cars with Ohio license plates to murder Virginians. Many non-racist Virginians, including quite a few friends, respect Lee deeply - the same is true in towns like New Orleans where other Lee statues are being taken down. Yet if once we could fool ourselves into thinking that the statue didn't represent hatred and racial hierarchies, we can't anymore. The discussion of local history has turned into one of national identity. The statue should be gone by Christmas. 

***

The real hero of Charlottesville is the town’s founder, Thomas Jefferson, who was among the most enigmatic of the founding fathers, idealistic and hypocritical - a real American, in other words. His idea of the gentleman farmer is also part of our heritage. It was an alternative to Hamiltonian industrial capitalism, but lost out in the tustle to shape American history. Much like English contemporaries such as William Cobbett, Jefferson believed in a rural ideal, reading poetry by morning, farming by afternoon, playing the harpsichord by night. His thought is also present in our beautiful "academical village" of the University of Virginia which he also founded. It is one of UNESCO’s few world heritage sites in the United States, so I guess it is part fo the globe's heritage as well, and it is also where the white supremacists stomped around with their tiki torches.

It’s time for us to stop being romantic about Jefferson, too. The statue in our minds needs to come down. We can recognize the great parts of his work, of his thought, in Charlottesville today, but we can also recognise that he allowed himself to use violence to dominate others, that he owned slaves and raped them. And we can recognise that equivalent scenarios continue to play out today, and will continue to play out until we are willing to face the truth.

There can be no more excuses. It’s not about Jefferson, or Lee, after all. We use monuments, statues, heroes, to inspire ourselves. In the end, the “truth” about Jefferson or Lee is a matter of trivia and history. Today, for every white male in America, we need to deconstruct the parts of our identity built on the graves of others. It’s not easy.

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Jefferson's gentleman farmer was the forerunner of the people who populate the gentrified Charlottesville that exists today of expensive coffee-shops and celebrity-filled suburbs. This romantic idea, much like the lifestyles of the American and English elite today, seems to engender a lot of resentment from those who can only watch helplessly, and are often gentrified out. It’s not only immigrants or, in the United States, African-Americans, who are denied access to America's Williamsburgs and Charlottesvilles, London's Shoreditches and Oxfords. In Charlottesville, descendants of white sharecroppers and black slaves alike are unable to afford $15 glasses of local Virginia wine.

The paradox implicit in Jefferson’s beautiful idea is that in the end, it’s impossible to sustain this chilled-out and happy lifestyle without the labor being done by others, be they slaves, sharecroppers, or factory workers in China. If America is in trouble now, the conflict comes precisely from the fact that our universalist ideas of freedom, equality, and liberty correspond to an economy that is anything but universal. We actually did it, keep doing it, and unless we can use these ridiculous men dancing through our streets iin Halloween costumes as a funhouse mirror to make us see ourselves as we are, we’ll probably keep doing it.

I resent Jefferson for his hypocrisy, because in truth, I would love it if America looked more like Charlottesville than the industrialized and nasty-looking Interstate 95 highway that leads up the East Coast, the aftermath of Hamiltonian industrial-revolution factory America. The New Jersey towns, the gas stations, what we contemptuously call “McMansions,” suburban Northern Virginia... none of it is really authentic enough. Parallel to the rich and ugly suburbs, are poor and ugly towns, the sort of places with unemployment and discounts on cereal that tastes like sugary trash in the supermarket.

The residents of these towns don’t hate the residents of more gentrified towns for our organic granola, they hate the world for the structures of oppression that they can’t escape, even as an international class, an educated class, a well-meaning class, escapes without even needing to. We coexisted in the same place but not the same set of opportunities, and we glided on to new and bigger worlds of possibility, ones denied to those of different class backgrounds, regardless of their ethnicity.

***

Some of my African-American classmates at Charlottesville High School were likely descendants of Jefferson’s slaves, coming from poorer neighbourhoods and housing projects and taking "standard" level classes, with honors and AP classes for students whose parents worked in the University (very liberal, of course), a genteel place where every year, some kid wears blackface or a Nazi outfit to a party - as a joke, of course. While my classmates in AP and Honors classes got help from our teachers in applying to Ivy League schools, the general level classes saw black and white students who shared poorer backgrounds acting out to get attention from harried teachers. This was public school, but Charlottesville’s many excellent private schools, of course, didn’t even have the general level students at all.

Despite some southerners such as Lee supporting the post-war “reconstruction,” white resistance to racial equality led to a Jim Crow system that wasn’t much better than slavery, and an American South which dozed in sweaty decline while the rest of the country industrialised and modernized. From 1865 to 1965, not much happened in the South. True, there were intellectual movements like the Agrarians, whose 1920s manifesto “I’ll Take My Stand” I found one high school afternoon in the local bookstore, we had our Faulkners, our occasional geniuses. But as a society, it was stagnant. 

It was only when the civil rights movement began that the south began to actually rise again. UVa went from being a minor regional school to being a world-class one. Charlottesville went from being a mediocre gentleman’s club to a place that people of all backgrounds could make lives for themselves in the public service. And we, the public, gained so much - that’s why my family chose to live there.

I remember as a child strolling the beautiful downtown mall to go to dinner al fresco with my parents, my father pointed out a man in a turban; it was Satyendra Huja, a Sikh professor at the university who had planned the downtown mall, and made a useless street into one of the nicest places to congregate in town. In 2012, Huja became the mayor. I guess the former mayor of Charlottesville who single-handedly made Charlottesville one of the most charming towns in the country often gets told to “go home,” as if that's somewhere else.

Martin Luther King Jr.’s birthday is a national holiday in the United States, but in Virginia it used to be “Lee/King/Jackson” day, with two confederate officers added in just as a reminder. That’s not really our heritage, and as students, we were grateful for the day but always laughed at how immature it was that the powers that be needed to block out Dr. King’s achievements so much.

***

Charlottesville is a southern town true to and even obsessed with our heritage - a place filled with museums, historians, bookstores - which wants to dissect that heritage to remove the parts of our forefathers (and mothers) lives that we can’t accept, like a sandwich that you open up, take the pickles out of, and then keep on eating. We love our heritage in Virginia. We read about it, celebrate it, live it every day. But heritage isn’t a static thing, fixed in time, and the walls between myth and history are thin. In fact, perhaps knowing about your heritage is the ultimate form of privilege. I doubt that either the descendants of slaves I went to high school  with, or the “redneck” (so-called because they got sunburned by working in the fields - “redneck” is a class slur) descendants of the illiterate sharecroppers of rural Maryland, do. 

What happened this weekend to Charlottesville could happen to any town as long as we those who are deprived of their history and who don’t feel at home in their hometown. But the Charlottesville I remember, and the one it is now, proves that you can go from war and conflict and institutionalised racism to one where people of all races and identities can coexist, for the most part, peacefully and happily. We can, if we try, honor Jefferson for his achievements without forgetting the slaves his beautiful buildings were built by. A “Memorial to Enslaved Laborers” is being built on the campus he founded.

For the first time, every one of my old friends is thinking about racism, white privilege, the origins of violence, and what we can do about it. We can honor Jefferson and General Lee’s memory best by trying to learn from their mistakes. Maybe, if it seems like we are able to solve these problems, I’ll have a child myself. I hope she goes to Venable Elementary School, and I’ll take her to Emancipation Park afterwards.