Bullying is bad. We all know that. It’s instilled into (most of) us as children. We’re told “if you have nothing nice to say, then say nothing at all”. We read in the press about teens, young adults, people of all ages taking their own lives because they have been bullied. Online bullying – cyberbullying – can lead to criminal charges.
Why then is the media exempt from these “rules”? Why are they allowed to print nasty, jibing, critical things about people with no recourse?
The impetus for today’s blog comes from a post I saw on Twitter by TV presenter and entertainer Stacey Solomon.
What’s got Stacey so upset? This is what. This personal, unfounded, and blatantly rude magazine front cover.
How bloody horrible. Imagine reading that about yourself? Imagine seeing that on a news stand while you were queuing at the supermarket. Or your kids seeing it. Or your parents. Or the parents of your kids schoolfriends.
Why oh WHY is that considered acceptable “reporting”? And why are celebs deemed to be fair game, or without feeling? It’s obviously impacted Stacey enough for her to make a public comment about it. She doesn’t seem like the type to court the media and use them to further her own agenda, so it’s extra spiteful that they would turn on her.
Not long ago Scarlett Moffatt publicly tweeted about how upset she was by the headline on a woman’s magazine calling her “hefty and heartbroken” after her split with her boyfriend. Scarlett’s harsh reality is that she rose to fame as a normal young girl in Gogglebox, loved for her opinions and personality. She was voted Queen of the Jungle in I’m a Celebrity, because she was well liked. On the back of that, she was more in the public eye, where people felt it their right to comment on her appearance and dress sense. After her stint in bootcamp when she lost lots of weight, she was vilified for being “too thin”. Gaining weight after a break up led to the “hefty and heartbroken” headline. The poor girl can’t win, and nor should she. Being in the public eye is no excuse for the media to be so damn opinionated and rude about anyone (apart from Donald Trump and Katie Hopkins, they both deserve it).
This was how Scarlett reacted to the headline.
Good for her! Yet, just a few days later when she was attacked by the press again for her dress choice on an episode of Love Island, she revealed the real affect that such negative headlines can have, because they not only appear in print, they fuel online trolls who also think it’s ok to get involved in bullying people for their appearance.
Some people will always be mean. It’s in their nature, or they use putting other people down to make themselves feel better about their own shortcomings. We can’t do anything about everyone in the world. What we CAN do is start regulating the press so that damaging and bullying headlines like this are not allowed to be printed.
There’s so much public focus on suicide and mental health problems at the moment, with all sorts of people urging those affected to “just talk” or “reach out”. But how many of those people are also part of the problem, because of their ill thought observations and comments?
The media needs to lead by example. Build women up for being good kind people who do good kind things. Don’t beat them up and flog them publicly.
It’s pretty fair to say that Donald Trump’s visit to the UK has dominated the news over the past few days – from him holding hands with Theresa May again <<shudder>> to walking in front of our dear old Queen, and kiss arsing with Piers Morgan, there was more than enough hairy tangerine fodder for the media to report on. Also gaining column inches and airwaves were protests around the country; the frankly hilarious Trump Baby balloon, and marches across London and other major cities, continuing up into Scotland as he enjoyed a round of golf with his son at his Turnberry golf course before flying off to Finland.
The laws around protesting in the UK are pretty relaxed and, if you follow the right protocol and keep it peaceful, public protests are a valid part of democracy and exercising the right to demonstrate displeasure. Of course there’s the policing of such protests, which comes at a cost to the taxpayer, but it seems that sometimes the police are in agreement with the protestors (the picture below has been hailed as the photograph of the weekend).
What about in countries where protesting about something important to you isn’t as welcome though? In Russia, where the World Cup reached its grand finale yesterday, the country has a terrible reputation for supporting the rights of the LGBTQ community and ranks 45 out of 49 European countries for gay rights by the ILGA-Europe, a network of European LGBT groups.
You can imagine then that a public protest wouldn’t go down too well.
Undeterred a group of activists has been subtly sharing a Gay Pride message throughout the duration of the tournament. Project Hidden Flag has seen six people from six countries (Spain, Holland, Brazil, Mexico, Argentina and Colombia) dressed in different coloured shirts – which together, form the Pride flag.
But what can the Russian authorities do? They’re just football fans enjoying a football tournament, right?
The brilliance of this is it’s absolute subtlety and creativity. Sometimes a handful of protestors can be just as effective as thousands. Well done those people!
70 years of bringing people into the world, looking after people in need, putting people back together again, fixing bones and scrapes, replacing internal organs, saving lives, making lives better, holding hands in times of need, saying nice things, delivering bad news, staring death in the face.
We should be forever grateful for our NHS, and forever protective of it to keep it as a free service for everyone who needs it. It will be a sad and socially dividing day if our NHS is ever privatised and we’re all forced to pay for care.
When we were in LA a few years back we made friends with a guy, Steve, who had no health insurance because he couldn’t afford to pay for it. He got sick and was put into a coma in order to recover; he was in hospital for 10 days all told. The doctors knew he had no insurance, so at that point they literally had to make a decision as to whether a man’s life was worth saving for “free”.
Steve recovered, thankfully for him. But the debt he accrued from his hospital stay was allocated against his name, his records, so that any time he earned any money, it was deducted at source as payment towards what he owed. Steve had an estimated $50,000 debt from that hospital stay and the treatment he received. He will never be able to fully pay it back and will never be able to get on his feet financially because of it. The treatment saved his life, but will also negatively affect the rest of his life too.
What a horrifying situation to be in.
Of course the NHS sometimes gets a bad rep; sometimes it’s deserved and sometimes it isn’t. People are always quick to point out the negatives, but less so the positives. However, knowing that in times of need there are highly trained doctors, nurses, physiotherapists and surgeons on hand to do whatever they can whether you’re living on the breadline or a millionaire is a comforting thought.
Here’s to everyone that is part of the NHS – not just the frontline treatment staff but the receptionists, the hospital porters, the cleaners. Nurses who go above and beyond to deliver not just medical care but hand holding, tissues, compassion and a shoulder to cry on. Surgeons who hold peoples’ lives in their hands. GPs with their extensive knowledge of a whole range of ailments; every day and otherwise, and can write us a prescription to make us better.
Share your NHS experiences with me in the comments!
I’m not into football at all but this is a World Cup related post. Don’t worry though, it’s not about the actual tournament, and it’s certainly not in support of Russia. Well, not in the traditional sense anyway…
All this media and public excitement about the players, the opening ceremony and the matches seems to have forgotten a very important thing – Russia’s antiquated and downright disgusting approach to LGBT people. But do you know who hasn’t forgotten about it? Paddy Power! Yep, the online betting giant – a perhaps unlikely source for human rights activism – has vowed to donate £10,000 to LGBT charity Foundation (created by Attitude magazine) for every goal Russia scores!
“[To] wind up a few gammon-headed Russian homophobes – perfect”
With the 8 goals scored so far that’s already a hefty £80,000 in the donations pot, and with the home nation already through to the final 16, let’s all get behind them and hope they hit the back of the net in the quarter finals to boost Paddy Power’s contribution even further.
There’s even a super duper hashtag you can use and follow – #RainbowRussians. A little bit of genuis!
Anyone else feeling slightly buoyed by the good results of the last couple of weeks?
Ireland overwhelmingly voted to Repeal the 8th amendment, meaning that women across the country have choice and freedom when it comes to their bodies and their pregnancies. It was positive to see the breakdown of voting numbers, and that people young and old voted in favour of change.
Harvey Weinstein was arrested in relation to the sexual abuse and rape allegations made against him. OK, so he hasn’t admitted to them, but with the overwhelming number of women who have come forward it’s surely only a matter of time until his guilt is confirmed by law.
The British justice system, so often accused (and rightly so) of being too soft on certain criminals, acted swiftly to bring bigoted EDL hate speaker Tommy Robinson to justice; trialling and sentencing him quickly for his blatant law breaking whilst serving a suspended sentence. It’s alarming to see blind and ignorant support for him across social media – people wrongly believing he’s been robbed of freedom of speech while trying to brig paedophiles to justice – but at least putting him behind bars sends out the right message.
Roseanne Barr was immediately held account for her very public racist comments on Twitter about a former aide of Barack Obama. Her TV show was canned by the network who actively denounced her views and any connection to her. Again a great warning that hateful language and beliefs is becoming less and less tolerated, and there will be consequences. Hold those views if you will, but don’t expect them to be tolerated.
Of course there’s still heaps of shit going on in the world (isn’t there always?) but small victories for minority groups must always be celebrated, and often have a domino effect to bigger things.
Today Irish nationals go to the polls in a referendum about legalising abortion. Under the 8th amendment, apart from in very few circumstances, it’s illegal for a woman to abort a pregnancy in Ireland. This includes if she is the victim of rape, if the foetus has life limiting disabilities detected in the womb or if the mother herself develops life threatening illnesses for which the treatment will harm the foetus.
That’s right – Ireland puts the rights of an nonviable collection of cells above the rights and welfare, both physical and mental, of a woman.
I’ve made my thoughts on abortion perfectly clear on this blog in the past. I believe that a woman should have autonomy over her body. Not just in cases like those outlined above. But in all cases. Because mistakes do happen. You can be as careful as you like with contraception and you may still get pregnant, even though you don’t want a child. It’s wrong to punish people into a life of parenthood when it’s not what they want. It’s not good for a woman, and not good for a resulting child.
I feel nervous today. “Why?” you might ask. “You’re not Irish, why should you care?”. I care because I’m a woman, and we should all care about women’s rights. It’s abhorrent to me to think of the hoops Irish women have to go through to have an abortion for whatever reason.
I’ve been following the #Repealthe8th hashtag on Twitter all week, and some of the stories I’ve read have been emotionally disturbing, draining and downright disgusting. Women who, short of money to make the trip, have tried to self abort with alcohol, hot baths and hitting themselves in the stomach out of sheer desperation. A woman who found out she was pregnant at 5 weeks but couldn’t get to the UK for an abortion until she was 12 weeks because she had to save up the money to afford it. Women who lied to their families and employer as to their whereabouts. A woman who couldn’t afford the extra cash for an anaesthetic so underwent the procedure with no pain relief. Women making the journey from Ireland to the UK and back in one day, with no rest or recovery time, because they didn’t want to arouse suspicion as to where they were. The fear of sitting in the airport waiting for a flight and praying that they didn’t see anyone they knew. Women who have ended up with a post abortion infection because they were too scared to go to their own doctor when back on Irish soil.
It’s an astonishing and unacceptable truth that a rape victim could receive a longer prison sentence for aborting an unwanted pregnancy than the rapist who sexually attacked her.
These are the reasons that the law needs to be changed.
It hasn’t been all doom and gloom. For every sad story I’ve been buoyed by tweets from people intent on being part of the movement for change. People who live outside of Ireland travelling home to make their vote count (it’s not possible to vote by post or proxy, which the cynic in me thinks is a deliberate move by the government to try and skew the vote). Irish nationals are travelling from far and wide; the UK, obviously, but America, Asia and Australia too – spending their time and money to contribute to the right result for women. People who live in Ireland, not content in just voting themselves, but in helping others to do so – offering free taxi journeys from the airport, lifts to the polling station and donating to Crowdfunding resources who are using financial donations to pay travel costs for people living out side of the country who are eligible to vote but can’t afford to get there. I even saw an individual on Twitter who said, because she couldn’t make the journey herself due to other commitments, she would personally pay, in full, the airfare of anyone who could go in her place.
And then there’s the humorous – a Twitter user’s Dad who was out walking his dog and given a leaflet by someone from the “No” campaign, who replied with “oh good, I’ve run out of bags”, and proceeded to pick up dog poo with the propaganda.
Ireland is in the spotlight right now, just like it was when it held the referendum on gay marriage. It has the chance to do something great; the chance to respect and honour it’s women, the chance to believe that a woman knows what’s right for her.
Abortions will continue, whether the law is changed or not. But a yes vote means that women don’t have to travel unneccessarily, don’t have to lie, don’t have to face financial upheaval and can recover in their own home with professionals on hand should things go wrong.
Also, let’s not forget, the sexual freedom that comes with legal abortion. I’m not talking about screwing around with no contraception. I’m talking about not having the fear that a sexual encounter that goes wrong – whether the condom splits, or the pill doesn’t work – won’t end up in a clandestine visit to the UK or an unwanted baby born as a result of lack of money or information. When I lost my virginity at 17 I felt safe in the knowledge that, if the worst happened, my life wouldn’t be changed in a way I didn’t want and that there would be a legal and safe way out of an unwanted pregnancy. Women should be free to enjoy sex without worrying. Let’s not make sex something to potentially be scared of any longer.
I hope with every fibre of my being that the antiquated anti abortion supporters are outnumbered and that sense prevails.
Now? I’m not depressed. At all. I have a happy marriage, a beautiful home, a settled job with great work colleagues and an understanding manager. I get to go on plenty of holidays and trips, I have a loving and supportive family and a network of friends who know and accept me for who I am, warts and all.
But do I still have depression?
Is depression like an infection, where you take tablets and then it’s cured? Or is it like diabetes (for example) where it will probably need to be managed for the rest of your life? Everyone is different, I guess. Some people fully recover. Some people will relapse or have recurring episodes throughout their life. Me? I’m scared to find out. After afore-mentioned wobble, which put a deep – if temporary – chasm in my marriage, I’m not really in the market for testing my mental health by coming off my tablets. Maybe that’s irresponsible. I don’t care. I’ve been on them for long enough now that they’re part of me, and I’ve never noticed any effects (apart from the obvious and much wanted positive ones) that have made me feel a need to stop taking them (apart from that one fated time, I know I mention it a lot but it was horrible). Not everyone is so lucky, and I appreciate that. For some people, the side effects of anti-depressants can be worse than the reason for taking them. A lot of people have to trial different variants before they find one that suits them. Not me. Prozac and I got along very well right from the beginning.
But, as I said, I’m not depressed. I can’t imagine ever feeling so desolate and bleak as I did when I first started taking tablets. Sometimes I even wonder “was it that bad?” – it’s such a long time ago, literally and figuratively. But of course it was that bad, at the time. You don’t take 3 weeks off work unable to face real life if you’re just feeling a bit low. You don’t think that it would be quite a relief to not be around anymore as long as you get to say your I love yous and goodbyes to people first.
And yes I still have low days, days where I feel shitty and I want the world to stop so I can get off, days where everything is an effort, days where I’m so caught up in my own thoughts that I want to just be left alone. I don’t class those days as part of my depression. I class them as just rough days, that everybody has, right? Or do they? I also blogged recently about not really knowing who I am because I’ve been on Prozac and the contraceptive pill for such a long time. So is a sad day, a flat day, a can’t be fucking arsed day simply a controlled by pills depression day?
Who knows?! (it’s bloody complex, being a human.)
So, if I’m not depressed but I still take a daily tablet for fear of returning to that space, how do I class myself? And because I’m not actively living it, and haven’t for a long time, is it even worth me participating in the conversation? There are people with much worse experiences than me, in the here and now.
My conclusion is that I don’t need to label myself. It doesn’t matter, right now, to have a category to fit into. The important thing is that I’m mentally stable (in the most part). I had my diagnosis, a long time ago, which put me on a treatment path which levelled me out. Long may that path continue, whatever it’s called.
PS. The lovely Tina from T is for Tina has written a very apt post in relation to MHAW. As she correctly states, “we all have a mental health, and we all need to look after ourselves and learn to put ourselves first sometimes.” Regardless of whether or not you have a diagnosed mental illness or condition, it’s important for everyone to to look after their own mental wellbeing. MHAW isn’t just to acknowledge people who’s brains are a bit wonky (I’m being flippant, not rude). It should also exist to remind everyone to take care of themselves. Say no when you want to, create some me time and indulge in things that make you happy. Your brain deserves it.
Unless you’ve been under a rock for the past week or two, you’ll have seen the extensive media coverage around famous film producer Harvey Weinstein, and the increasing number of allegations against him of sexual harassment, sexual assault and even rape.
You may also have seen, on social media, the trending hashtag #MeToo, which women around the world; normal women with normal lives and normal jobs as well as celebrities, and everyone in between, are using to highlight the fact that they too have received unwanted sexual attention of some sort. Started by a tweet from actress Alyssa Milano, the idea is to highlight what an alarming and extensive problem unwanted sexual attention is in all walks of life.
“Suggested by a friend: If all the women who have been sexually harassed or assaulted wrote “Me too” as a status, we might give people a sense of the magnitude of the problem.”
In the wake of all this, it was with interest that I read this article, which begins with the statement “Around six or seven years ago, I was sexually assaulted on the way home from a night out. Except I didn’t realise I had been.”
If you don’t want / don’t have time to read the article, then the crux is that a woman was approached by a man who made suggestive remarks, put his hand under her dress, tried to grab her and restrain her. She managed to get away and didn’t consider it sexual assault, because she hadn’t been raped. However, on phoning the police to let them know “just in case” the police officer had a very different view, asking how she’d feel if this same man had gone on to rape another woman because his behaviour hadn’t been reported? The police took the account very seriously, and the guy ended up being prosecuted and jailed because he’d done it to many women.
How many women are out there who, like the author of the article, think that such behaviour isn’t serious enough to be reported? That it’s just “blokes being blokes”. That, as women, this kind of behaviour is just something we have to put up with?
Women are expected to be a lot of things in life; mother, professional, wife, girlfriend, home maker. I’m not saying the same isn’t true of men, in some cases it is. But generally it’s women who are subjected to the most expectations, while similarly being expected to look great too. And, to some men (not all, of course), a woman is there as a toy for them to manipulate, because they can. Powerful men, such as Harvey Weinstein, pray on the fact that they have the power to behave how ever they want to women; whether it be making suggestive lewd comments, touching them inappropriately, or forcing them into unwanted physical behaviour. He knew he had the power to make or break an actress, and that’s why this has been allowed to fester and spread through Hollywood; because no-one wants to lose their job, their career and their future by being the first one to stand up and be counted against someone who can deny the allegations, take on an expensive lawyer, and crush any accusations into the ground.
Except this time it’s different. This time it’s happened to so many people, so many women in the public eye, that it’s created an uprising. An awareness. Women realising that just because it “wasn’t rape” it doesn’t make it any more acceptable or any less serious. Women realising that enough is enough. Our bodies are ours – to be touched and enjoyed how and when we want, by who we want. We’re not public property for men who can’t control their urges. We don’t have to suffer physical and mental exploitation in order to be successful in our careers. When we say no, we mean no.
For too long, lascivious men have gotten away with their behaviour purely be being men. That it’s just what men do. They’re sexual beings and women should be complimented by the attention. It’s just a bit of fun. The women wanted it, they were just playing hard to get.
And women too have played their part (and this isn’t victim blaming in anyway). We’ve thought that, as women, we have to put up with such attention. It’s just the way of the world. And so we’ve kept our mouths shut in a just grin and bear it fashion.
We don’t have to put up with it. We need to stand up and be counted. Men need to realise that a bit of “harmless banter” and a cheeky grope is a serious matter.
I’m one of the lucky ones, if lucky is the right word. I can’t think of an occasion where I’ve felt threatened or uncomfortable by the presence, actions or behaviour of a man. And for that I’m so so thankful. While I’m not using the #MeToo hashtag to reflect anything that has ever happened to me, I fully support and stand behind every woman who is brave enough and strong enough to use it themselves, and also those who have cause to use it but, for whatever reason, choose not to. It’s still taboo, and for some women the memories or repercussions are still too much to deal with.
**DISCLAIMER – this post is not an attack on people who fundraise. I think they’re incredibly admirable and, without them, cancer charities would severely suffer**
I have a bee in my bonnet. It’s about the way fund raising for cancer charities is portrayed in the media.
First of all, let’s take a step back. The fact that fundraising is necessary at all really grinds my gears. Kids baking cakes and women shaving their heads and men running marathons is all great stuff, but the fact that research and support for such a vile, in-discriminatory, debilitating, life changing killer disease like cancer has to be funded by the public is appalling. When you look at the amount of money that is spent on war, footballers wages and Hollywood films, and then see that cancer charities are asking for donations to continue life saving work; well, something doesn’t add up there. The same can be said for many charities. I work in the sight loss industry, and some blind people rely heavily on charities like RNIB and Guide Dogs to level the playing field with sighted people for a physical disability that isn’t their fault. But that’s another post.
So, cancer charities are very necessary and very worthwhile.
My problem is the way in which the media encourages people to get involved, in this whole fun, uplifting show of bravado that “together we’ll beat cancer.” My current bug bear is with Absolute Radio, who are promoting a comedy show to raise money for Macmillan Cancer Support. The advert goes something along the lines of “we’re going to show cancer who’s boss – it’s us.”
It fucking well isn’t us at all. Statistically, the chances of being affected by cancer (that’s having it yourself or knowing someone who does) used to be 1 in 3. Now it’s that 1 in 2 people will get cancer. Not even be affected by it. Actually get it. I know a couple who both have cancer, now, at the same time. The guy has been told his is incurable, and while dealing with that, his wife got diagnosed with breast cancer, had a mastectomy and has just started chemotherapy.
That isn’t us “bossing” cancer.
The radio adverts for Macmillan coffee mornings also pissed me off “oh I’ll have a slice of cake then, if it means beating cancer”. For fuck’s sake, stop trivialising it. These adverts, with their airy fairy-ness, don’t represent the gritty reality of people being unable to eat, sleep or walk because their body is being ravaged by tumours. They’re making cancer into a sociable excuse to get together or a reason to bake some cakes and make yummy noises.
I’m not saying the fundraising efforts, and the encouragement to make them happen, should stop. Of course it shouldn’t; it’s an integral part of treating what is a global problem. I’m just saying I wish the reasoning behind these efforts wasn’t delivered in such a fluffy, softly softly way. And I know that’s because I saw what my Dad went through after his cancer diagnosis, and because I watched him deteriorate mentally and physically up until his death. And it’s because I’m bitter that all the cancer research in the world couldn’t save him. And it’s because I’m cynical, and I actually believe that a cure for at least some cancers already exists. And it’s because I can’t believe governments won’t sanction the use of cannabis oil to help cancer patients, in spite of it’s proven palliative and sometimes curative effects.
But mainly it’s because cancer is one of the most serious and worst things many of us will ever have to face; either personally or by association. And giving it a fascia of having fun isn’t doing justice to how life changing and damaging it is.
Here’s an idea for a marketing campaign.
“Cancer is evil and deadly and we want to support people affected by it, which we can do with your donations. Please give generously, either personally or through sponsored events. Thanks”
I’ll never forget the day my Dad asked me if I’d heard of Dignitas. It was about a year after his inoperable cancer diagnosis and we were sitting in his lounge one Saturday afternoon. He’d told me before I got there that he wanted to talk to me about some things, and I knew it would be related to his illness. He’d started off with discussing his will, so I was already crying by the time he mentioned the assisted dying clinic in Switzerland. I knew it wasn’t just idle conversation.
My Dad was very very scared of how he would die from cancer. I’m sure he was afraid of dying too, but his main focus was the how; what would happen to his body in the lead up to the end. Effects of prostate cancer include spinal cord compression – when the active tumours press on your spinal cord leading to limited mobility or, in some cases, paralysis. He was consumed with the idea that this might happen to him. That his final days or weeks might be spent confined to bed, relying solely on others to clean and feed him. It wasn’t how he wanted his life to end.
By the time he brought up the subject with me he’d already started looking into it. He’d been in touch with Dignitas to find out the process for being accepted at the clinic. Contrary to somewhat popular belief, their services aren’t open to just anyone. It’s not enough to feel you’re done with life and want to end it all. They ask for recent medical proof of your condition and, if possible, a prognosis. They’re not in the business of helping healthy people to die. They’re there to provide a much needed choice; a dignified end for people who want to control how and when they die, and at what stage in their deterioration. For people like my Dad who don’t want to face the end in potential pain; losing their independence and dignity as their illness ravages their body.
We discussed the logistics of it; how he would want his wife and I to fly with him to Switzerland. How he would need to be there for a couple of days prior to his chosen end date in order to be seen by medical professionals and psychiatric assessors. How he could change his mind at any time. How the clinic would help with arrangements around accommodation and restaurants and things to do in the days prior. How, on the chosen day, he would self administer a lethal amount of liquid barbiturate which would send him into what looks like a deep sleep, while his wife and I were there with him, holding his hand and able to say our goodbyes. How, after around 30 minutes, his organs would slow and eventually shut down completely. How his body would be cremated in Switzerland. How it might be difficult to repatriate his ashes into the UK because of the legalities around assisted dying, and how he understood. Whether he would tell family and friends in advance. Whether we would bring his belongings home, after we flew out to Switzerland as three people, and came back as two.
It was heartbreaking.
But, that said, I completely understood. And I completely supported him.
You see, my Dad never recovered from his inoperable cancer diagnosis. I don’t mean physically, that was an impossibility. But mentally he was never able to put it to the back of his mind. Although he went on holidays and did stuff while he still could, he never had that “fuck you cancer” mentality. It was pretty much all he spoke about. And that’s an exhausting way to live. From the time he was diagnosed he became obsessed with how long he had left to live, and what that time would be like. And, the more he found out about how bad things could become, the less he wanted to let nature take it’s course.
My Dad didn’t make it to Dignitas. He made the mistake of asking his GP for his medical records, so he could send them away as per the rules of the Swiss clinic. His GP asked him why he wanted them; almost goading him into telling him why. So my Dad told him. And his GP said he would have to consult the practice legal team, who advised that they couldn’t condone ending his life in that way, so he had to mark my Dad’s medical files as a potential suicide case with strict instructions not to release his files to him.
Dad was angry. Incredibly angry. He felt he’d been tricked and blamed the GP. He sought out charities and organisations and individuals who may have been able to help. He applied for his hospital records in the hope that they weren’t marked up with his intentions. But it proved just too difficult to get the information he needed quickly enough. Dignitas required recent medical records, and by the time the hospital processed the request they were already out of date for his needs.
During that fateful GP appointment, his doctor spoke very highly of the palliative care services available in the UK. Palliative care is end of life care. Pre-death care. The intention is to make sure that people with terminal illnesses are comfortable, not in pain and not suffering. There are Macmillan nurses and hospice workers who dedicate their life to looking after people with cancer, and they do a magnificent job. But what about the mental pain? The fear and the anguish of what’s to come? You can’t treat that with a morphine injection and a comfortable bed.
Palliative care 100% has a place in the NHS, I strongly believe that. But it shouldn’t be the only option.
When my Dad was given a timescale on his illness, towards the end, his obsession with what was to come became even worse. The team from Macmillan told him he had about 4-6 weeks left to live. He was too poorly to do anything, to weak to go out, too uncomfortable to share his marital bed, too ill to enjoy food or even eat. He lost a lot of weight, needed sticks just to get around at home and was regularly physically sick. Hew was also in immense amounts of pain, because the team supporting him were struggling to get the balance of medication right. The palliative care team the doctor had spoken so highly of; who were supposed to be a real and equal option to that of Dignitas. He had no quality of life, and still continued to fear worse to come; that he would be paralysed before his body gave up. He didn’t want to have to have a bed in his lounge and be unable to live the life he had previously there. He made the difficult decision to be transferred to a hospice for specialist care.
My Dad never made it to the hospice. He had a suspected stroke in the early hours of the morning he was due to be transported there by ambulance. He was rushed to A&E where he was convulsing and writhing in suspected pain. After the amazing hospital staff managed to get him comfortable, he was transferred to a private room in a ward where we knew he would see out his last hours. He never regained consciousness but all of his family were around him for the whole day and into the night, where he died not long before 11pm. We were, thank god, able to say our goodbyes. It was, in a way, the best thing that could have happened. Had he survived another 4 weeks, as diagnosed by the cancer specialists, he would have suffered an incredible amount, lost even more weight, been even more poorly and perhaps even have become paralysed as he feared. He’d have been in a hospice, away from home, waiting to die. And that just isn’t acceptable as the only option.
Imagine how much better he could have coped from the time of diagnosis until the inevitable end if he knew that he didn’t have to face the very worst that the illness could throw at him? That he could know in his own mind when enough was enough, and end his life on his terms? Because that’s the other issue with Dignitas. You need to be well enough to make the journey, and physically able to take the barbiturate. People who do make it to Dignitas often have to choose an end date in advance of what they would if assisted dying was an option in the UK, because they need to be sure they’re capable of getting there. They need to book flights and accommodation. They need to choose an end well in advance, without knowing if they’ll definitely feel desperately ill enough by that point. People are potentially cutting their lives shorter than they need to because of our archaic laws here in the UK.
It’s also bloody expensive, so not a valid option for everyone.
This is where Dignity in Dying comes in. They’re a charity who’s focus is to change the law in the UK around assisted dying; to make it possible for people with a terminal illness and a doctor’s diagnosis to choose when to die, in their own home or place of their choice, with their family and friends around them. For people to do it on their terms. Not to have to slink off like criminals. Not to have to worry whether their loved ones who have helped or accompanied them will face legal repercussions back in the UK. Not to fear undeterminable pain, potential paralysis, loss of bowel control, loss of appetite, sickness and god knows what else while they’re waiting to die. We aren’t talking about families pushing vulnerable people to end their life so as not to be a financial or literal burden. We’re talking about people for whom there is no hope of getting better, only the reality of getting worse. People who want to control their own destiny and make their own decision on when enough is enough. People who, understandably, don’t want their final days to be full of pain and suffering; people who don’t want to potentially die alone in hospital; people who want choice. Not inevitability. Not that sense of having to give in and accept their fate. The power to say enough is enough.
I know it’s said so many times by people who support the right to assisted dying, but we wouldn’t allow animals to suffer the way we allow humans to. I recently read a comment on a Dignity in Dying Facebook post, which said a terminally ill person would probably be better off going to a vet than a doctor. You can see the point. If an animal is poorly we do “the kindest thing”. It’s an accepted part of a humane society and an accepted part of being a pet owner. It’s allowable by law. Why then are people with cancer who can no longer eat or drink towards the end, due to the illness, allowed to essentially dehydrate and starve for days until their body finally gives up? Why are people with neurological diseases allowed to become prisoners in their own body, as their muscular responses cease to function, with death the only hope of respite?
Noel Conway was diagnosed with Motor Neurone Disease (MND) in November 2014. Prior to his illness he’d worked in education and been incredibly active; hiking the Shropshire countryside around his home and skiing in Europe. His illness put a stop not only to that, but to any independence of life. He can now no longer walk, has difficulty breathing and has to be hoisted from his bed to a chair. He knows he’s in the latter stages of the illness, and his time is limited. Noel’s illness is terminal and he has naturally started to focus on the end of his life, which he would like to be on his terms. So, in an incredibly brave and dedicated act, Noel became involved with Dignity in Dying; using his own experiences and position to lobby for a change in the law in the UK.
In a better, more advanced, more compassionate country, Noel could make the most of the last months of his life in the small ways he can still create enjoyment; safe in the knowledge that when he knows that the time is right for him, he could call on a doctor to help him die in his own home with family and friends around him. Of course that time may not come. Noel may decide that he wants nature to take it’s course. The key word here is choice. Noel wants the choice to be available to him. Instead, because of archaic British laws which the UK Parliament are too scared to review – in spite of overwhelming support from the British public – Noel has spent his dying months in a legal battle which he’s taken all the way to the High Court.
In true Noel spirit, he and his legal team are already looking into the appeal process, on the basis that the 1961 suicide act – which prevents assisted dying in the UK – is incompatible with human rights legislation. Dignity in Dying will, of course, support Noel in his appeal.
Assisted dying in California – Betsy Davis
In November of last year, Betsy Davis – a 41 year old artist also dying from MND (or, more specifically, ALS which is the most common form of MND and also the type that Noel Conway has) held a party at a Californian ranch, surrounded by 30 friends. There was music, laughter, shared stories and memories. At the end of the weekend, she was wheeled out in her bed to watch the sunset and ingest a legally prescribed cocktail of drugs which slowed down her organs until she passed away peacefully. The assisted dying law had only been in force in California for a month.
What a difference this law made for Betsy. Her fear at living the last months of her life entombed in her own body, being fed through a tube and being completely reliant on others for every day care was replaced by a sense of purpose to organise her own exit; to spend her last days and hours how she wanted to, to end her life on a high note created at her own will, rather than in potential excruciating physical pain, and certainly mental anguish.
Support for a change in the law
There is a lot of support for a change in the law; not just from the general public but from people in the public eye.
The former Archbishop of Canterbury, George Carey, has come out in support of choice.
Archbishop Desmond Tutu also calls for choice, and for that choice to be respected.
Now, if men of the cloth can understand the need for a change in the law, when religion is at the very heart of some people’s objection to assisted dying, why can politicians not see the need for change?
This image of Sandy, for me, sums it up.
It certainly would have helped my Dad, it would help Noel Conway, and it would help thousands of people both now and in the future. We’re forced to take responsibility for how we live our lives. Let’s be granted the responsibility for how we choose to die, too.