QEDcon 2014

My QED write-up this year is extremely late but I’ve backdated it so you’ll never know, mwuahahaha.

qedconAs ever, it was a fun, friendly, fascinating, inebriated weekend with the new venue (more on that later) full of lovely people whom I very much look forward to seeing more of next year (and throughout the year, for those who live near-ish by).

The speakers were fantastic as expected and the new addition of the Skepticamp during the first day as people arrived was well-received. It’s a great opportunity for people to showcase their talks on subjects they care about to a receptive skeptical audience – so if you’ve got one brewing, hopefully it will be back next year!

The opening video is hotly anticipated each year and it was certainly no disappointment this time around. The only credit I can take in this one (which is more than the others, mind) is that I dug up a spare labcoat from work for one famous face to wear. You’ll catch him before he closes the door:

So that was a great start and certainly put everyone in the mood for the weekend ahead – well done and thanks to Marsh and everyone on the production team and behind the scenes who made that happen.

The new venue, now the only hotel big enough in Manchester to accommodate us, the Palace Hotel, received mixed reviews. The interior is very strange, having been a Bank at one time, the ceilings are absurdly high, with some decor looking like it would be more at home in London’s Tube stations – shiny tiles and details in odd places.

The major let-down came when my friend Sandra slipped in the bathroom and broke her arm; the staff weren’t too helpful and she has some remaining costs to cover after having to undergo surgery back home in Seattle. Thankfully it’s healing well but this of course ruined her weekend – hopefully we can all make it up to her next year.

I had a wonderful time meeting new people, getting to know acquaintances better, learning from the speakers and having some excellent chats and laughs with already good friends. A highlight was having a quick rant about Women Who Eat On Tubes with the one and only Robert Llewellyn (better known to some as Kryten!).

2014-04-11 18.00.39

Amidst the talks and drinks and tweets and hugs and naps, this hilarious exchange occurred on Twitter:

Ms Courtney is well-known to some skeptics active on Twitter, and you can get a reasonable measure of her character from this display:

Absolutely hands down the most moving, memorable and applauded talk was given by Nate Phelps, son of the late, infamous, hateful pastor of the Westboro Baptist Church, Fred Phelps. He left the church as soon as he was legally able at 18 and shared with us some of the experiences he, his mother and siblings endured growing up there. Please donate to the fund that will make the televised version of his story, Not My Father’s Son, a reality – it will be a must-see.

No one else has ever managed to plunge a room full of skeptics into such tingling silence, and moved so many of them to tears, then received such thunderous applause and standing ovation. Completely deserved and an hour I will never forget.

SONY DSC

I, and everyone else who had the opportunity, thoroughly enjoyed talking with him, too – he’s an incredibly nice guy. If he is ever in town or within travelling distance to speak, absolutely go and see him. I’ve Storified some tweets from during and after his talk on the final day, and there’s a link below to the full subtitled version.

A wonderful closing montage was put together by the talented Mr @elmarkodotorg – in which my friend Dave and I can be found dancing at the front of a busy room, but you won’t spot us because it’s quick so it’s ok… See you next year!!

 

Links

University adversity – advertising rape

Dear readers, sometimes I feel like apologising that I spend a lot of time in posts on “feminist issues”. But I shouldn’t, so I won’t. I don’t write about this because it’s the only thing I care about, or because it’s particularly interesting – I do it because it’s annoying and it affects too many people I care about, and me, too. Content warning discussion of rape etc.

I’d love to spend more time on other things, but until people realise, accept and get equally angry that sexism and misogyny are everywhere, it’s not going to get better and everything else that’s interesting tends to get polluted with ridiculous-to-dangerous sexist attitudes and actions. So don’t be angry at me, be angry at everything you see that fits the bill – like this example:

Come to our party, find a vulnerable girl!

Kent Students’ Union poster advertising “Party in the Car Park” – apparently withdrawn

For some background: I grew up in Canterbury. I was there at the weekend. I spent a lot of time on the University of Kent campus as I was in a relationship with someone who went to study there when I was at school, and I did some work experience and courses there myself.  So I’ve a certain affection for it, and I know some other alumni who are equally upset by this.

The University of Kent’s official student union, Kent Union, thought this poster was appropriate to advertise an upcoming student event. It’s not – here’s why, here’s what they’ve said, and here’s what I’m doing (and what you could do).

Edit: following Kent Union’s comments, please see updates here and here.

What’s wrong with this picture?

Before we get into the other problems this poster presents, let’s start with the fact that they used this image of a student without her permission. She’s drunk outside the campus club, once called The Venue (but perhaps not these days, I don’t know), if I’m recognising it correctly.

On to the other problems.

This poster is advertising a party outside with the tagline that people (the image suggests female students) will be losing their friends and left alone. Yes, it is common to wander around looking for people while out at a busy venue. But that is not recommended, it’s not fun, so why use it? Well, maybe it’s fun for other students who find these lost, drunk people on their own. Why might that be fun? Why are we told to stay with people we trust while we’re out and incapacitated to some degree?

Because there are horrible people around who do not respect the idea of consent. They believe they are entitled to things, things like other people’s bodies, and to use them as they please without their permission. These ideas are reinforced by a lot of media and culture around us, and it’s dangerous. Teaching people they can take what they want without regard for the happiness, safety and wellbeing of others is what creates rapists. People might not think that’s what they are, if they offer to take a drunk stranger home, then go to her room and do things she hasn’t agreed to. She was at the party, alone, she wore that short dress, she didn’t fight me, so it’s fine, right? WRONG.

Why is this such a problem? University students are as young as 17/18. At school, these messages are also received loud and clear. At university, they are reinforced. This problem is not exclusive to Kent University, it is endemic in higher education. That is something that should worry everyone, and something we need to work to counter.

We know that sexual assault is rife at universities, and the majority of cases aren’t reported to universities or the police – for the same reasons rape and sexual assault is generally underreported (women aren’t believed; their behaviours are questioned; they are victimised further by the legal process; by family, friends and strangers; the conviction rate is low; they fear their situation will worsen) and more. You can find out how many people admit to rape and roughly how many victims there are, so long as you rephrase the “rape” part – people seriously don’t realise that it means forced sex. And they don’t realise that “force” is quite broad, or that “coersion” comes into it.

This is the same in the US, where studies show that not only do men admit to rape in colleges, those who do it do it repeatedly. Rapists think it’s normal – they think everyone does it, because it’s their entitlement. People around them must speak up – jokes are not harmless. Challenge, or no one ever learns, and more victims are created, and kept silent, carrying these experiences with them forever.

Existing evidence and guidelines

We already know this is a problem; the NUS knows it, and universities should know it. In 2010 the NUS released the “Hidden Marks” report, detailing the negative experiences of female students in UK universities with regard to sexual assault and harassment. Some exerpts (emphasis mine):

“The picture that we have revealed is disturbing. 14 per cent have experienced serious physical or sexual assault. 68 per cent have been subject to verbal or physical sexual harassment. Nearly one in four has experienced unwanted sexual contact… violence against women is widespread, serious, and is hampering women’s ability to learn.

Institutions, students’ unions and students have a pressing responsibility to take immediate action to tackle the problem… adopt a ‘zero-tolerance’ approach to harassment and violence.

… Respondents reported a range of different consequences of violence, stalking and sexual assault to their health, learning, confidence and relationships, with the most common consequence being deterioration of mental health.”

The NUS and University of Sussex has reported on the effects of lad culture on student experiences. They recommend the following:

“… the student movement must take action to combat the emergence of ‘lad culture’ in higher education and the negative impacts this is having on students. This is not something that NUS can accomplish alone. We will need to work with partners inside and outside the student movement to determine how best to respond to this culture that is at odds with our values and is damaging to our students. We know that this cannot be achieved overnight, and it will require a nuanced and thoughtful response…

We will work towards… creating a safer, more positive, more empowering culture on our campuses”

I hope they can work with Kent Union specifically given this evidence. On to what the union have said in response so far.

Owning up

Kent Union have responded to people’s complaints with this nonpology:

“We would like to sincerely apologise to the students that have been offended by one of the posters we have designed to promote this year’s Party in the Car Park. It was never our intention for the poster and its message to be interpreted in this way.

The concept behind our marketing of the event is to use real photographs taken last year combined with factual statements provided by students.

We can confirm that the poster has been removed and will not be used within any further marketing. In the future we will check our designs with relevant people to ensure they cannot be interpreted in a different way.

Sorry once again,

Kent Union”


What is the purpose of an apology, and does this statement achieve any of the aims it should have had?

1) Admit fault. If you’re apologising for something, you have to recognise that the thing you did was wrong/negative/hurtful in some way. You should address that in your apology. The statement above makes no indication that they concede the poster is problematic in any way, that it encourages/endorses sexual violence (or at least uses the prospect of it as a positive reason for people to attend their event) or is otherwise damaging.

They do not apologise for using the image without consent (perhaps unsurprising, given the context). They pass the blame on to the observers. “for… its message to be interpreted in this way.” – it’s not about interpretation! People seeing this have informed them quite clearly about what it obviously means. What possible positives are there to drunk women losing their friends at a party?! Grow up, own up, apologise properly.

2) Apologise for your mistake and the hurt caused. “We would like to sincerely apologise to the students that have been offended” is not an apology. “Sorry you’re offended” isn’t saying sorry, it is, again, passing the blame on to you for having those silly feelings.

Also, you haven’t just offended students here, you’ve actively promoted the idea that taking advantage of people is ok – you’ve put students in danger. A range of people besides current students are unhappy about this. It’s not just about the university environment – people leave university and go on to jobs and the rest of their lives. Moulding people into inconsiderate abusers at university has a ripple effect and you have a responsibility to counter this.

3) Commit to rectifying the situation. Saying sorry isn’t enough – you have to do something positive to make amends, if you actually want the situation to get better. “We can confirm that the poster has been removed and will not be used within any further marketing. ” A good start. What are the other posters like? I’ve asked if any current students have seen others – do post below if so.

Another good thing would be to create a poster that explains consent to people. There are great sex educators around, like Bish whom I’ve just linked, who could help with this. There are also detailed recommendations in the NUS Hidden Marks report, linked above (pp. 30-33). Includes: “Use educational initiatives to challenge negative attitudes and stereotypes” and “Create a campus environment in which students feel safe“.

4) Commit to doing better in future. If you apologise without any indication of hoping to improve and prevent further harm from your actions, it’s pretty empty. “In the future we will check our designs with relevant people to ensure they cannot be interpreted in a different way.” – commit to researching the problem of sexual violence in universities, and how marketing actually affects people. Discipline the person/people who designed this in the first place. Make it clear that they will be educated. That everyone in the Union knows this is unacceptable.


 

University reponsibilities

As detailed in the reports linked above, it has been recommended by the NUS that university institutions, unions and students work together on these issues. Given UoK seems to pride itself on its environment:

“Canterbury is consistently rated as one of the safest university cities in England and Wales.”

One would think that they would be concerned by this clear tarnishing of their student life image. Sadly not:

It’s also made clear on the UoK Staying safe page that being around trusted friends is an important aspect of personal safety (emphasis theirs):

Best way to stay safe at night is to stick with your friends.

So, they could at least acknowledge that the union’s promotion was contradicting several guidelines, and that they will (and hopefully already do) monitor their activities and provide guidance to the union. If this is not standard practice in any UK university, why not, and how will the NUS’ guidelines be enforced if they refuse to interact on these important issues?

I’m writing to the Kent Union to link them to this information. Please feel free to use anything presented here if you wish to contact them, too. The more people who do so, hopefully, the fewer people will think this kind of thing is acceptable and harmless.

Edit: a friend points to Kent Union’s constitution (emphasis mine):

“The constitution has to be approved by the University so we can function as a Students’ Union.”

“Section D: Under the Education Act 1994, The University of Kent has a statutory duty to ensure that the Union operates in a fair and democratic manner and is held to proper account for its finances. The Union therefore works alongside The University of Kent in ensuring the affairs of the Union are properly conducted and that the educational and welfare needs of the Union’s Members are met.”

It is also clear that Kent Union receives the bulk of its revenue in the form of grants from the University of Kent:

“As a charity Kent Union receives grants from the University of Kent, income under contracts for the provision of charitable services, membership contributions and income from trading activity closely associated with its charitable purposes. Incoming resources are accounted for in the period in which the service is provided.”

It might be advisable to involve the Charity Commission if the university remain apparently unwilling to appropriately regulate the behaviour of the union.

This is not a problem exclusive to the University of Kent. I’d like to see them do better, and I think they can. They could be an example for other UK universities, and institutions worldwide, if they chose to tackle this with the determination and transparency that it deserves.

As the NUS said, it’s not just their responsibility. It could affect you, too. Maybe it already has. Maybe you have or will have children who are students. Not that we need to be directly affected by things to be decent people who stand up for our fellow human beings (hopefully). We all live in this society with other people, and a lot of them go through university, so let’s work to make it better, shall we?


 

Links

Lots of depressing sexist things are coming up today. Here’s a few of them (and this happens pretty much every day, just to show the scale of the problem a little) and other links:

  • UoK and Kent Union have already been criticised by local media: Medwire, Kent Online (well done Bethany Taylor, women’s campaign officer, for voicing concerns)
  • The NUS have spoken about student feminism and sexual harassment – I hope they will engage with this instance too.
  • I have Storified both some of the responses to the poster and its removal here, as well as pro-feminist NUS tweets.
  • Our government’s cuts are disproportionately negatively affecting women, and as this piece shows, victims of domestic violence. Thanks, Cleggeron.
  • Crisis Pregnancy Centres, who hate and lie to women about abortion, are still open for some reason.
  • Gendered toys are becoming more and more common, but feeble “girl monkeys like pink things and boy monkeys like blue” arguments don’t stand up to scrutiny (New Scientist)
  • Tech website thinks it’s the online tech-focused version of Maxim. And we wonder why there aren’t as many talented women in tech as there really could be? (Sweary post).
  • Everydaysexism‘s book is out soon, and today an exerpt is available, which details some of the shocking experience of school-age girls in the UK.
  • A good post on how people misunderstand rape culture
  • Edit: following Kent Union’s comments, please see updates here and here.

Cancer selfie-awareness

I have to write about this, following some discussions.

I’ll start by saying that I obviously don’t have a problem with the concept of fundraising for cancer charities (having researched in a few places, now working at one and, y’know, being a human being). I’m not saying everyone who did it has missed the point, or shouldn’t have participated. I find the subject interesting; personally and professionally.

The questions I want to raise are generally more academic:

What is awareness? How effective are these campaigns/memes? What are the negatives, and do they matter?

What’s it about?

Some people woke up to find their Facebook feeds full of selfies – moreso than usual. I have to say I didn’t, rather my feed was peppered with criticisms of this mysterious selfie overload, mostly of women not wearing make-up and being proud of that. Apparently it is a big deal for some.

Under some posts came the clarification that the photo was “for cancer awareness”. Maybe they’d include a donation link/number to text to encourage people to give money to a relevant cause. Maybe they’d specify a charity. Lots of people seem to think it’s about breast cancer, although I find that odd, given it does not tend to manifest on one’s face.

According to this article (which I dislike mainly for its use of Facebook photos without stating that they sought permission), the idea took flight last year:

in September 2013… Escensual.com launched the nationwide DareToBare campaign for women across the UK to raise money and awareness for Breast Cancer Care. The campaign aimed to persuade women of all ages and walks of life to get sponsored to go to work, social activities or even a night out without their make-up on.

What motivated the company to do so is another question – as they sell cosmetics, focusing on their own product would make sense. It’s for a good cause. But between then and now something happened and it’s resurrected itself as #nomakeupselfie, flooding twitter and facebook with barefaced ladies (and some men getting their slap on, or posing bare-chested – men can get breast cancer, too – or people sharing images with basic self-check instructions, again usually for the breasts).

A friend wrote this post to mull over his feelings about it. I commented to link to a video about skin cancer that I saw on twitter that I thought was well-done.

I think it’s important to remember this wasn’t started by a charity. If it were, I’d be far more critical. I suppose because it wasn’t, that has led some to criticise individuals quite harshly – I wouldn’t advocate that. People are well-intentioned and the donations have come in at over £1m for Cancer Research UK alone now.

Cancer ‘Awareness’


by Alice Sheppard

“Look, I raised it!” – Image by Alice Sheppard (who does donate, calm down)

Awareness is one of those current buzzwords, no one seems to be sure what it means. Certainly when I think about it and try to pin it down, I’m not sure either.

Are you aware of cancer?

I believe just about everyone is these days. However, what do you mean by “aware of”? Or by “cancer”? There are many things to consider:

- How to be self-aware; what to keep in mind about your body, to see a doctor if anything unusual happens.
– To take up screening invitations (cervical, breast, prostate, bowel etc). The earlier cancer is detected, the more likely treatment will be successful.
– How survival has improved over the last 60 years for all cancer types (jump to Figure 1.5).
– Some cancers are still very hard to treat and require more funding – including pancreas, brain, lung, oesophagus.
– Some cancers are now cured* often (mainly testicular cancer, some forms of skin cancer and now breast & prostate cancer, Hodgkin lymphoma). *In cancer talk by cured, we usually mean “disease-free survival for at least 5 or 10 years”.
– Why does cancer seem more common? We live longer now, we’re also fatter and more alcoholic, but it’s always been with us, and it’s not an exclusively human disease – most animals and some plants get it, too. Even dinosaurs did.
– What is cancer?

Cancer is hundreds of diseases. We have more than 200 types of cells and more than 70 organs, and even when looking at a specific one, like the breast for example, there are many “sub-types” of cancer in that location that are quite different and will require different kinds of treatment. It will take much more research to understand all of these diseases. While they have some things in common – cells growing out of control – they have important differences. That’s why we need new drugs and more basic research into cancer biology.

Sometimes awareness is very important. Breast cancer research and treatment may not be where it is now without the dedicated campaigns we’ve seen. Hard-to-spot and unusual symptoms and risky behaviours can be spotted/avoided more easily with clear education.

For example, HIV/AIDS became a serious public health issue in the UK in the eighties but public health campaigns hammered home the important messages about safe sex and drug use, and it had measurable positive effects, on other STIs too. But you do have to specify what you want people to be aware of, and that seems to be lacking in this case.

Some questions


There are a lot of valid, important and interesting questions the campaign could raise. But, as far as I can see, it hasn’t really. So here we are. However, a simple, engaging campaign cannot take the place of a comprehensive education on a very complicated subject, and it never will. If it inspires people to learn more then that’s great. Here are a few things worth thinking about, if you are interested.

Screening


This is a complex topic that I can’t cover fully here but worth mentioning (follow Margaret McCartney‘s work for more). Screening has likely saved many lives – by detecting their cancers earlier, people can seek appropriate treatment, which will probably be less severe than if they wait and present at a late, advanced stage where their cancer may have spread (metastasised) and be uncurable or even without proven treatment options. Even then, there are clinical trials people can sign up to – oncologists should help people who wish to do so.

There are also valid questions about the potential harms of screening. Something that complicates cancer diagnoses is that we generally don’t know which pre-cancerous growths (for example, considering prostate or breast) will progress in someone’s lifetime become a serious and potentially deadly cancer, and which won’t. A favoured metaphor would be “how to separate the tigers from the pussy cats“. There is plenty of research into finding markers, indicators on cancer cells, that could tell us which patients we need to treat straight away, and who could just be monitored over time because they’re unlikely to progress.

The danger with treating everyone the same, whenever you find something suspect, is one of over-treatment.  Diagnoses are extremely stressful. Cancer treatment is generally unpleasant. Not something you want if you can avoid it. So explaining risks to people, and what options they have, is a priority. Ultimately, it should be the patient’s choice if they wish, for example, to opt for surgery to mitigate their risk, or to wait and have regular tests. Many factors can affect our cancer risk; our genes, lifestyle, environment – it’s hard to say for sure what will happen when we still don’t fully understand this complex set of diseases. Long story short; do attend your appointments/take the tests when they arrive!

Focusing on women


Once again this appears to be using the worn-out idea that women’s appearances are very important and essentially public property. There are a number of issues around making a big deal out of not wearing make-up:

Loads of women don’t; why should those who do be considered “brave” to lose it for a photo, particularly in the context of cancer and all it entails; the whole exercise seems to shift the focus from something important to something relatively trivial; women are being told that they “look better” without (usually by men; suggesting how we appear to men is something important to be considered) or are self-deprecating saying they must look like zombies – this reinforces harmful ideas that women are out on public display, mainly for the “male gaze“, and should act accordingly, and that make-up (or lack of) is necessary to look “acceptable”.

A friend shared a lovely comment she saw on a post:

“Isn’t it ironic that below every “no make up selfie” there are comments saying “looking beautiful hun xx”. No they do not. Stop lying”

While not everyone tends to see the world through feminist lenses, these are valid issues that should be considered in the context of such a campaign. Women (teenagers in particular) are pressured to look a certain way, to buy and wear a lot of make-up; the whole thing can be wrapped up in insecurity. The demands placed on women of all ages by media and society are very real and need to be addressed.

Finally, all of the above ignores that fact that many women will wear whatever make-up they choose to simply because they enjoy it. As it should be. It’s nothing to do with what other people think – you can style your own face, not other people’s. Again, all having very little to do with cancer or awareness of it whatsoever. If someone has an explanation as to why the “dare to bare” idea is relevant and useful, do add in the comments.

Men have participated too because yes, men can get breast cancer (but the lifetime risk of developing breast cancer is 1 in 8 for women and 1 in 868 for men: stats) and of course many other cancers. Some are putting on make-up for a laugh or, apparently, going bare-chested but I’ve yet to see evidence of this. I have seen first-hand the “you look better without it, ladies!” type comments, though, which remind me of “smile, love!” and make me very angry. Men may well be fed up of being excluded from cancer fundraising drives, but in fact I’m told male-focussed ones have been tried – the problem is participation.

Other unofficial campaigns have had more sinister ulterior motives. One, encouraging women to go bra-less, seemed to have been created by a sleazy individual (or a few), with very little thought for the realities of breast cancer patients’ lives and perpetuating tolerance of assault. Some are purely useless and really are just silly vanity projects, like those that encourage women to post colours that describe their underwear, with no added explanation; educating nobody.

Edit: a friend of a friend of a friend (yes, the internet) has posted her selfie, and it actually is brave. To raise awareness of the fact that violence against women is far more common and accepted than most people like to think, she has posted the image of her bruised face – she was beaten for telling a guy in a club not to touch her without her permission, and told to “smile” with it. She’s raised >£1k for Oxford Sexual Abuse & Rape Crisis Centre. Good going.

Edit II: The Vagenda have a good post exploring this point further.

Family and friends


Another problem can be that this tactic can negatively affect patients and families. A huge influx of these images, which might remind people of loved ones lost, or that they personally wear make-up to paint on eyebrows lost to chemotherapy. There are some angry responses to be found.

Of course, it’s likely that anything tackling a tough subject will upset and offend some people. That doesn’t mean it’s automatically wrong, but it is important to be considerate – again this would be more pertinent if a charity were responsible. For example, a recent campaign by Pancreatic Cancer Action featured a young woman, Kerry, who wished to draw attention to the consistently poor survival rate and treatment options for pancreatic cancer by explain that she would wish she had breast cancer.

I thought this campaign was very well done. It made people stop and look, it made them question, and quickly provided answers. It educated people about the need for more research into pancreatic cancer, and better diagnostic techniques (it’s so hard to treat because it’s detected so late; being inside the body, it can become very advanced before any serious symptoms occur and then it’s too late – in this case awareness of the symptoms really can save lives).

But people also hated this campaign and vociferously complained. I had a long chat with a metastatic breast cancer patient on twitter who really didn’t like it because they felt it trivialised the difficulties of metBC patients. I didn’t see it that way, but encouraged her to let the charity know. While they received many complaints, the campaign also seems to have met some of its aims and they are following up with more ads.

What was really awful was that people abused Kerry personally, sending her horrible messages and berating her decision to be part of the campaign (PCA contacted patient groups for guidance before running it). She died in February – and I still wonder what the people who sent her those words were thinking, and what they feel now.

I’ve lost family and friends to cancer, most people have. My personal questions about these campaigns don’t tend to stem from that, but it is always worth considering what a range of people are likely to feel, and to be confident that potential benefits outweigh the harms.

Does it work?


I’ve already linked above showing that CRUK has seen a spike in donations, as have some other breast/pancreas or other specific focus charities. However, there’s more to consider here.

Some have said most of the selfies they saw, beginning about 5 days ago, had no links or explanation whatsoever to accompany them. It was only after the criticisms began – focusing on those who failed to add relevant links or information as being lazy or purely narcissistic (well, most people are a bit) – that the donations and nominations and relevant links started to appear. So perhaps it wasn’t the campaign itself, but people’s irritation that it wasn’t working, that really made the difference… can we ever tell? Cancer charities like CRUK and PCA guiding people, creating some purpose and direction also helped.

One problem with uncoordinated campaigns is that their results can be difficult to keep track of. Without knowing what effect you’ve had, you can’t say whether something was successful and you can’t design better endeavours in the future. I hope to return to this idea in a post about a cancer charity linking with a well-known tabloid soon; link here when it’s done.

Will it have any lasting effect or will things go back to normal, or worse: below it, after the spike? How many people have donated for the first time? Will they continue? Has anyone learned about self-checks and will they do more after seeing friends participate in this? Have people posted photos in lieu of doing something genuinely useful (like people who say I’ll pray for you then do nothing of actual substance…)?

That last point is what drew the real criticism. If you don’t have a purpose besides showing people your face, you haven’t achieved anything. Even adding a link or naming a cancer type would help more than that.

Doing something


PrintA friend asked about doing something together to raise a bit of money. After talking I realised I am actually doing this year’s Thames Path Challenge in September with work (my leg is dodgy so I don’t run on it, before you ask…). So she will donate some money for that – all our fundraising efforts go to funding lab projects – and will be doing the Colour Run.

Charities

Don’t forget about other types of charity that support cancer patients and their families. Hospices need donations and volunteers. Marie Curie Cancer Care and Macmillan Cancer Support nurses provide invaluable support at the most stressful times and they are spread so thin. CLIC Sergeant and the Teenage Cancer Trust support younger sufferers and their families. Cancer-Research-UK_482There are many charities that focus on specific cancer types – you might choose to support one of these if you have been personally affected.

Many of them have charity shops so if you need to buy stuff you can donate at the same time! This is still my preferred route.

Otherwise, Cancer Research UK supports hundreds of excellent researchers across the country, who run labs dedicated to furthering our understanding of cancer biology, designing new drugs and surgical techniques, testing new treatments and running clinical trials, and helping to educate the public about cancer.

It’s very difficult to be fully “aware” of cancer, even when it’s staring you in the face, quite literally, as someone you love loses their life to it. It’s a huge thing, the Big C – but donations are important, wherever they come from.

As well as the donations, people are talking and hopefully learning – that’s definitely a plus.

Harpal

Edits:

Left: Nicked From Kat (centre). Right: Dr Harpal Kumar, CRUK chief exec (via @CR_UK)

More Links

CRUK answers FAQs about #nomakeupselfie

- Andrew Steele, creator of the Scienceogram, discusses the phenomenon in relation to the wider science funding landscape for The Conversation.

Are you transphobic? Am I?

This is a difficult post to write, but it’s been on my mind for a while. No one is obliged to comment, or to educate me if I’m wrong (which no doubt I will be), but comments are, as ever, welcome, to continue the discussion. I’ll start with some conditions – please read them first and try to bear them in mind if what I’m saying causes some rage. Edit: some very constructive comments have happened, so thanks to everyone who’s pitched in and been civil with it. I’ve also added some stuff to the end of the post.

- Transphobia is real. Hundreds of people are killed and abused every year because society says we must obviously present as male-men and female-women and some people disagree so much, fear and hate so much, that they think murder or assault is justified. It is not. Obviously.

- People within oppressed groups are justifiably angry, and it’s not their job to educate ignorant people. But the ignorant people who want to learn are not enemies.  It can be difficult to judge, and it shouldn’t be their job, but piling on people you’ve decided are worthy of vitriol isn’t necessarily constructive.

- Discussions of sex and gender can become heated, and while scientific-sounding ideas have been used as a justification of hatred in the past, acknowledging the reality of biological sex is not in itself transphobic. That, as a human being, a woman, a scientist, a “liberal” sort of person, is my view. I know people disagree. Please bear with me.

Edit: I think this could be tl;dr summed up as: sex, like gender and sexuality, may well be appropriately considered as a spectrum. However, the existence of spectrum does not negate the existence of its extremes; if we’re thinking greyscale, then white and black are still a part of that. Not more important, but maybe more frequent. Simpler, perhaps, and more widely represented throughout the world (not just in people). Language, however, does not name all the shades of grey, but we seem more capable of understanding and describing black and white.

Language

I believe this is the root of the problem. Many languages are based on the male/female sex binary. While English does not gender* all or most words like some languages do, we can still find it hard to accommodate some concepts because we don’t have the linguistic tools to do so. Given language is an integral part of our lives and predominant means of communication, it’s not surprising that trying to discuss emotive, personal subjects that our language does not even yet adequately describe is fraught with difficulty.
* Gender here being the linguistic term for words that have male/female properties (in reality or only in the language), not the gender expression of people.

It is now more widely accepted that gender is a spectrum; adult human beings are not all just men or women, but individuals often have and show qualities of both (or neither). But, just because there is a spectrum, and we don’t have language to adequately describe it, doesn’t mean that the concept of male and female sexes isn’t a real mammalian biology phenomenon. It is. It’s what the majority of the reproducing animal world does. M+F —> offspring**. That’s not a revolutionary idea, and it’s not false.

People not fitting neatly into the “norms” (a word I don’t like because abnormal has clear negative connotations; defaults? Standards? Typicality? Something like that) of sex and/or gender doesn’t mean they’re not still people who deserve respect and rights like everyone else. People having to alter their reproductive organs or being any kind of trans* doesn’t (shouldn’t) change the fact they’re still people. I’ve written a bit about LGBT+ labels before, it’s a fun tangent.

Edit: I changed the URL for this image due to a comment below, which highlights some controversy around its creation and use.

People have the right to identify as they wish. We have a need to categorise, to define and describe – indeed that’s what science (biology in particular) really does. But here we’ve moved out of biology and into more of a social arena – the two are quite different. While people might be conflating sex and gender all over the place, they’re also conflating biological concepts with human cultural concepts, and I think that’s another hindrance to progress.

The problem is, as I said, that transphobia is real, because we are very much stuck in the sex/gender binary (in language and culture), and discrimination happens because people fear what they do not understand. That shouldn’t be the case, and surely the way to address it is education. But if we actually cannot even talk about it because our language doesn’t accommodate the ideas and people only ever get frustrated – how can we achieve that?

A similar problem

A lot of the anger feels similar to the problem feminism has with its predominant “whiteness” and the justified anger from women of colour (WoC) whose voices are slowly being heard more widely. I would not presume to speak for them and I do believe it’s our responsibility to listen and learn, and not to demand teaching. People sometimes overcompensate and cause even more offence, and make themselves sound like idiots. It can be frustrating when you’re shot down when you think you’re doing A Good Job and it’s important to ask where your own anger comes from – is it because they’re wrong, or maybe you could do better?

Undoubtedly trans* voices need to be more widely heard (when I wrote about Juliet Jacques’ SitP talk, I did so because I found it enlightening, as something I was – and still am – hugely ignorant about, and I hoped more people could learn from it – you can read about her own experiences here). But a lot of the vitriol online is coming from “allies”, whose motives I would question given their tactics. I don’t think everyone they leap on is wrong and I don’t think the conversation is moving forward. Perhaps that’s because of where I’m standing, I don’t know. But I’d like to see an end, or at least a significant curtailing, to the name-calling that seems far more knee-jerk than considered, and far more off-target than useful. In addition, the language problem is perhaps unique to the trans* debate. It can of course also be offensive when other people are discussing you – if you haven’t seen Panti Bliss’ speech on homophobia yet, do take a few minutes.

Discussions

Sex is a biological concept. Gender is a cultural construction, a social idea, a form of expression  – to which everyone has the right. Both are spectra, both have “exceptions to the rules”. But the exceptions to the biological rules of sex do not invalidate them; its definitions apply to all mammals and many other species.  A problem has arisen where stating this seems to lead to attacks (but here’s a very reasonable reply), where the person saying it is branded transphobic and other things – is that necessary, fair, helpful, or true?

I’ve linked to Gia’s post above, and another situation I’ve experienced was the Soho Skeptics Trans* Panel (which Gia helped to organise, with the help of Bethany Black and Adrian Dalton – you can listen here). The room was full of people, many of whom were likely ignorant of any trans* issues at all, and no doubt they learned things there. But people on the internet decided it was wrong because they disagreed with some definitions and didn’t like that Julie Bindel was there, even though the panel itself got on fine. Bethany even quit Twitter for a while because of the abuse she received after the event.

Discussing the basic facts of biology is not transphobia. It isn’t hateful to say maleness and femaleness are things, that XY sex determination operates in human animals. It isn’t hate speech to say that the XX sex chromosome configuration in people tends to create female biology, and women who can reproduce through conception, pregnancy and birth. Or that XY sex chromosomes, under ‘normal’ (that again) conditions, create testes that make sperm and these can fertilise eggs; inside or outside of a uterus, now we have that technology (and indeed can create offspring without the use of male sex cells at all; but these are technological feats more than biological ones). The existence of the ‘outgroups’, the atypical, doesn’t nullify any of this; exceptions don’t destroy rules.

Just as we typically have 2 arms, 2 legs, a heart with 4 chambers and 20 digits. A human who has atypical biological features is still a human. That is a cultural issue; that we recognise the rights of all. To state that someone with Down’s Syndrome has an extra chromosome is a biological truth, not hate speech. Just as to state a MtoF transgender woman who has XY sex chromosomes is “genetically male”. Although it should be irrelevant in everyday life. The fact that it is not, that some people base thoughts and actions of hate on it, is why education is important.

People discussing trans* issues who want to understand are not doing so to cause harm. People laying into them for having conversations about this stuff, trying to understand, trying to work out better ways of using our imperfect language, of accommodating the needs of people of all sexes/genders – because some needs are specific to some people. One of the very few things I agree with RadFems on is that “women born female/women” will have different experiences from someone who has become a woman later in life [Edit: please see comment with valid point that I've phrased this wrongly] and hasn’t always experienced femaleness and the social effects. Culture dictates, experience shows. Arguing that is futile and helps no one.

From @boodleoops:

To say women’s oppression is rooted in female reproductive function is (clearly!) not to say that only those who reproduce experience it. What it does mean is that oppression of those believed to be female has its origins in a fear of, and need to control, female biology.

It’s frustrating because people arrive instantaneously with online hate-flamethrowers – and again I understand why they’re angry because there are transphobic people all over the place (a good place to start is deleting “tranny” from your vocabulary, which I’ve heard from too many who should know better. See the link for more.) – shutting down potentially helpful dialogues. Like the Soho panel. As I said at the start, it’s not other people’s responsibility to teach us – we need to listen too, but if you can’t even start a conversation without people viciously trying to silence you straight away, how can we expect to get anywhere at all?

More biology and culture

The species of animals living on Earth are typically composed of two sexes; male and female. Males and females together produce young. In human society, however, there are layers of culture on top of our basic biology and instincts, we have laws and rights and these do (or should) extend to every individual. We have choices, and we are as a whole and as individuals more than a basic desire to procreate. Discrimination, persecution, oppression and exclusion based on any physical characteristic or life choice (where others are unharmed) is unacceptable and any “social justice movement” seeks to address this.

** There are many exceptions to the male/female sex binary – it can be far more complicated than the simple dichotomy we tend to see and learn about from the get-go, for example things that asexually reproduce like bacteria, plants, fungi and aphids, but even then there are often further complications to that basic idea; hermaphrodites (animals with both sexes’ reproductive organs, usually invertebrates); gynandromorphs (animals with generally male and female physical characteristics, e.g. male on one half and female on another) and so on.

The major exception to binary sex that’s relevant to humans is of course intersex. But the issues that intersex people face are fundamentally different, as explained well in this short link. And the very real existence of intersex people (and other animals) does not mean that maleness and femaleness are not real. The issue with being assigned one sex or the other, the insistence on putting children in one of two boxes, is different from not personally identifying in gender terms with the sex of your own body. There are discussions around the usefulness of the “cis” and trans terms that I don’t think I can get into here.

Of course, women who do not choose to reproduce are no less women than those who do (though we childfree people have to battle with this a lot; with the inappropriate and intrusive questions, with the dictation of your own plans and future decisions by others, with the questioning of your purpose and morality, of being labelled selfish…) and women who cannot reproduce ever in their lives or following surgery/other treatments are also no less women than those who can.

So gender certainly is not dictated by our physical bodies – any trans man or trans woman is the gender they live as, defined by them, not their bodies. But  sex is also somewhat independent; surgical alteration of the body does not change one’s chromosomes. Cloning an adult trans man who was female at birth would create a female child (HT @flayman for that point). Whatever comes after that is irrelevant – from the biological viewpoint (again separate from the cultural one), that child will develop a female body as her XX-containing genome dictates. She may or may not become a woman. Questioning the concept of male and female because gender, and our language that describes it, is imperfect – and because some believe gender is a matter of brain differences, again I’m not going there – is an argument built on shaky foundations and a refusal to acknowledge genetics and developmental biology.

“But, were they a man or a woman?!” That is not important to us, get on with your day.

A major problem I see is choice and beliefs around how that works. If we can choose our gender (can’t see why not) can we not also choose our sexuality? Again some radfems would say no, and even that bisexuality isn’t a real thing. I don’t entertain that argument. Perhaps it’s partly genetic (most things are) – but is that important? Maybe, like sex and gender, it is also a spectrum – not just of preference, but of choice. Some choose, some do not and cannot. Some change over time. The bottom line is we are all people and must be treated as such. The hurdle to overcome is fear of difference; and not difference in a negative sense, but in the sense we all differ in many ways from each other, and that is not a bad thing.

Fear

Because the groups of people who do not fit into the categories we are comfortable with – both biologically and socially – are relatively small (not insignificant), others traditionally have taken advantage and because of their fear have caused them pain, which is wrong and something that many activists, Gia included, try to address if they can. That doesn’t mean we’ll never be wrong just because our intentions are good, far from it. But perhaps we could reassess who or what the enemy really is.

This piece on fear is excellent. It says what I want to say:

A feminism whose primary aim is validating these fears – one that supports and thrives on them – is no feminism at all. It is, at best, a diversion, a support group. At worst it reinforces the oppressions it claims to challenge. It denies any possibility of change, presenting self-definition as a substitute to challenging oppression at all.

I am tortured by the fear of being a terrible person but not of being called one. There are worse things than name-calling. Most of us know what these things are. They’re what feminism should be there to challenge.

So if you want to call people transphobic because you think they’ve misstepped in their handling of our imperfect language in an imperfect culture, which we are all hoping to make better, for everyone, then you can do that. It might be abusive, though. And it really doesn’t help.

Edit 20/02/14: I didn’t elaborate much on the background before this post (most of which I’ve not been involved in), or the other aspects of sex that aren’t genetic. If that’s something you want to read about, go here –  a good post that explains why (again, quite justifiably) a lot of people are angry about this stuff. It’s life, and human lives are complex, and – again – the oppressive culture that affects many people is very real but can easily be ignored by those of us who are not directly affected. Further insight to be found at TransHollywood.

The comments below are important, too. I did not wish to chime in on this to be “splaining” and condescending to those for whom it is all very old stuff; like a man telling feminists what to do. It’s come across like that, however, and that’s a failing on my part. What I meant to do was ask why this particular issue is so hard to discuss compared to some other things, and my personal conclusion is that it is partly down to the limits of our language. I think the complexity of human sex and gender is inadequately covered by our current vocabulary, understanding, and ability to express these ideas and lived experiences. An interesting article on the effects of language on our thoughts and behaviours has come out, showing that specific gender references in language can cause us to identify in certain ways at certain times, compared to speakers of other languages.

My main point is that, while I absolutely acknowledge that these restrictive ideas and the words themselves can be and are used to oppress (which I do not condone), it is surely not the case that any use of them is, in and of itself, oppressive. We have to have language to communicate. Scientific language specifically is by definition reductive; words are used and created to describe ideas and discoveries. We cannot at every point explain the fine details, the exceptions, the contexts, of every single word we use – if we did that, we’d be like Ents, and we’d never get anything done.

Alex’s article makes the fair point that perhaps the scientific language could, therefore, change – if circumstances require. It is after all up to science (and scientists) to accept new findings and alter conclusions accordingly. I think the sex/gender issue is peculiar to human mammals – even if other species exhibit similar exceptions to a simple male/female “dyad”, the cultural issues of gender expression, of oppression in society, would appear not to exist. This was a point I tried to make in saying we could distinguish between biology and culture. Obviously science does not stand apart from culture entirely, it is part of it – one affects the other. But it is still the case that procreation is what life on this planet does in order to continue being life, and mammalian animals do that, primarily, with two sexes. Humans are of course more complex, we live and we love and we die – the sex bit (both the act and the state of being) is rather more complicated than it is for our animal cousins.

I hope these extra words clarify some things, along with the extended discussion below. Edit even more: I’m really not Lewis’ biggest fan by any means but enjoyed this on intersectionality “uses and abuses”, *and* the comments. And I can say I’m not a fan without turning into a bully, remaining willing to listen.

Related:

On the Sunday Assembly

On January 19th I got up earlier than I would have liked for a Sunday, downed a mug of tea and headed to Holborn to check out the Sunday Assembly at Conway Hall.

I’ll say it at the start and I’ll probably have to say it at the end – this isn’t just criticism. It’s my experience, it’s what I thought and felt. I’m sure it’s valuable to people – the hall wouldn’t fill up otherwise. I’ve seen people express interest so I’ll share my thoughts – people are most welcome to their own.

Not because I thought that would be a fun thing to do, but because I had a visitor who wanted to check it out. Equally, not for fun, but as a journalist. I thought it might at least be interesting, given the theme for the day was “brains” – brains are cool, and certainly fascinating. Why not?

Well, the reason I don’t go to these things is because I don’t feel like I need to; what benefit would I derive from what is essentially a church service that just happens to not be in a church and lacks mention of a god? I was never forced to church as a child (thanks, mum ‘n’ dad) and the collective acts of worship I was required to attend at school only ever made me quite uncomfortable.

People preaching to me (even if I actually agree with them) isn’t something I enjoy, so why voluntarily go in for it? Makes more sense to stay at home, have a bit of a lie in, watch The Big Questions with a big mug of tea and in a mild rage, then get on with some housework.

I livetweeted my experience, which was met with a mixture of “oh that sounds as awful as I expected!” and “that’s what I thought” across to “what’s your problem, people are having fun, leave it”. Which is all fair. Some of my posts were quite snarky but, honestly, I was terrified – beforehand, and very much during. I just found it really intimidating – for the above reasons, it’s just not my scene.

Particularly when it started properly. After finding a seat high up with a direct view to the stage, where there was a screen showing the London Assembly’s logo/slogan and a band off to one side, the music began. Sanderson Jones – the… convenor? – then began clapping and pretty much everyone joined in straight away. They stood up. Karaoke I’m So Excited. I was excited in a scared sort of way. We remained seated, although wary of being odd-ones-out.

Then people were jumping. To a karaoke song! On a Sunday morning! How confusing. The song finished, but straight into the next one: Daft Punk – Get Lucky. They altered the chorus slightly to make it “a bit less creepy” – replacing the original “he’s/she’s/I’m” pronouns with “we’re”.

We’re up all night ’til the sun
We’re up all night to get some
We’re up all night for good fun
We’re up all night to get lucky…

Repeat almost literally ad nauseam. Not that I’m uncomfortable with songs about sex – sex is great! And being a fuzzy godless liberal, one is perfectly allowed to express such sentiments (slut-shaming problems aside), although the precise implications of the Daft Punk lyrics aren’t without issues. It’s catchy for the tune and nothing else, for me. But this was the kind of awkward that occurs when you’re watching a film with your parents then some characters are suddenly naked and squirming and making grunty noises. Why is this mishmash room full of people of all ages singing a song about shagging..?

Something else that bothered me the whole way through was the fact that we were being filmed from a variety of angles. Not even on mobile phones or little handheld camcorders, but giant balance-on-your-shoulder Proper Cameras. I hope we don’t stick out like a sore thumb, sitting among the revelers, with my pale apprehensive face.

Speaking of pale faces, the room was overwhelmingly white. I suppose there are a number of reasons for that – central London, other things I haven’t considered. Plenty other groups suffer the same lack of diversity – it would be good to address it positively, but I don’t have the answers myself.

We had a little skit from a couple of guys that imagined aliens speaking about animal life on Earth, and particularly humans, surprised that “meat” could do all we do, especially talk. It was quite well-done, I like sci-fi and I enjoyed it.

Sam Nightingale, a neurologist, gave a talk about the relative infancy of neuroscience, the general brilliance of the human brain, and closed with an inspiring speech praising our squishy thought generators (my phrase).

The next karaoke special was something by Elvis. This was followed by a moving and fascinating talk from a woman called Lotje, who had a brain haemorrhage at age 32 but survived – only she lost her memories and verbal abilities. Having re-learned a lot of what we take for granted, she still cannot read, but has a healthy appreciation for her brain regardless. What it’s been through, how much she has recovered, and how beautiful the world seems to her every day. Very humbling.

We were all invited to take part in some “silent reflection” which felt very much like the “let us pray” moment at school. I found that strange – it wasn’t for anything in particular, just to be generally “thankful”. I’ve no issue with silences performed out of respect, but again it was the context that made it uncomfortable for me.

At the end several collection vessels were passed around and a surprising amount of people were clutching £5 notes. There’s no required contribution, I’m not sure exactly what they’re collecting for – some explanation would have been nice. I’m told the group tries to be very open about their finances but we agreed with each other that this seemed strange. If your aim is to be as helpful in a community as church groups often are, why not elaborate? There was a short talk from a guy who, separately, takes part in Casserole Club, but no indication we were funding it, more of a recruitment drive.

So, as I said at the start, most of this isn’t even criticism really, it’s just that I felt immensely uncomfortable being there. On their own, each of the things wouldn’t bother me, or I’d actively enjoy them.

Of course I like celebrating science and humanity – that’s why I consider myself a humanist, I go to science talks/lectures of an evening for fun, I go to Skeptics in the Pub and things like Nine Lessons And Carols For Godless People (I was even in it!!). I go to Conway Hall often for various events, but never feel as out of place there as I did that Sunday.

The difference at those other events, I feel, is that there’s no expectation of overt and uniform enjoyment and agreement. Everyone who attends does so as an individual, no one tells you what to do or think (indeed discussion is generally the most fun bit) and invitations to be full of wonder aren’t accompanied by an applause prompt or followed by a sing-song.

If you like that sort of thing…

I love music and singing. I love gigs, and jumping around to songs can be good fun. Just not so much when standing in a hall full of clapping folks singing along to a rendition of a pop song, led by a slightly awkward (although very talented)  karaoke aficionado on-stage with a man doing big encouraging over-head claps at the crowd. I guess you have to be there.

It’s great to encourage people to make an effort, to better themselves, to help out where they can. I’m just not sure a branded get together helps with that in any real way besides making attendees feel like they’re part of a community – which again in itself is no bad thing, I like the communities I’ve joined. I don’t feel like they expect me to act a certain way at events, though, and none of those things I like feel like church – but this did.

To quote the 9 Lessons creator himself:

[NB: typos top/to, between/be]

Therein lies my problem. As a pretty-much-always godless person, I feel no need to bring church into my life. All the cringeworthy groupthink and [Edit: WP has deleted the rest of this sentence for me; I'm not sure what else I said. Something more about communities probably]. Some might feel a form of it is missing, or enjoy finding it – no problem. I just find it strange, too, that the model is the same.

If you do feel like you need a church, but not the God stuff, I guess the Sunday Assembly might be for you. They might not call it an atheist church but that’s really what it is. Will it suffer the same fate as those that have gone before? We’ll see.

Links

  • My Storify from the day – scared tweets!
  • Andrew Watts went to this same service and has shared his experience via the Spectator; he has his own faith and was surprised someone asked him about it at SA.
  • Alom Shaha‘s original piece on his experience, though he says “My thoughts have moved on since then” – good to read the comments, too.
  • @MrRegars seems to have had a similar experience to me but also enjoyed finding out why some others were there.
  • Simon Clare writes “In Defence of Sunday Assembly” (not that my aim was to make this an attack…) from his Brighton perspective.
  • Simon Clare resigns from the Brighton Sunday Assembly due to double standards and financial issues relating to the London founding group
  • Alex Gabriel discusses the new call for full-time SA interns on £20/week (in Central London…)

Healthy Evidence Forum

AskforEvidenceNHSchoicesSense About Science have launched a new discussion forum today, called Healthy Evidence:

“We are very pleased to tell you that NHS Choices Behind the Headlines have asked us to partner with them on a new online forum to help people understand the science behind health claims and connect them with expertise. Healthy Evidence is launched today. Join the community here.”

The more people that join and share their insights into the science behind health reporting, the better the resource could become. Collating useful sources can help people judge which information is beneficial rather than bogus, and what’s likely or dubious.

The internet is a wonderful thing, but it’s full of conflicting advice and opinions, and when it comes to medicine/health, that can have dangerous and even life-threatening effects. People who have some small mistrust of medicine can have that fear amplified by horror stories, exaggerations, distorted tales and people out to take advantage of those who have their doubts.

Alternative medicine proponents are sometimes genuine, wanting to help people, but often they are out to catch people who are vulnerable. Their weapons of choice in convincing their potential clients and customers include anecdotes (often faked) and empty promises.

For people to avoid being manipulated by the unscrupulous types, it helps to be able to find accessible information that examines big claims of medical efficacy. Of course, people will ultimately make their own decisions, but it’s important not to let dodgy claims go unchallenged. Informed choices are better!

Healthy Evidence is part of the Ask for Evidence campaign which supports and encourages people to request for themselves the evidence behind news stories, marketing claims and policies. The aim is to help people understand the importance of evidence and increase the quality and accountability of evidence in public life.

If you like looking behind the headlines, examining claims and challenging misinformation, sign up! People are already talking about sugar, misleading cancer cure claims, being critical of health reporting, dementia tests, side effects, and a host of other topics.

Do spread the word!

Scientists cure cancer but no-one notices

Licenced under Creative Commons by-nc-nd 2.0 (Image B0002108)

Wellcome Images: Human breast cancer cells dividing

Today the Cancer Research UK Science Update Blog has published an excellent post by Kat Arney: “There’s no conspiracy – sometimes it just doesn’t work“. Edit: for follow-up, a post about the top 10 Cancer Myths by Kat and Olly. Must-read.

It has prompted me to look back through my posterous archive for something I remember writing but couldn’t find on here – about how offensive it is when people accuse us (people working in cancer research in any capacity) of being part of some great conspiracy to hide cures. I’ve edited it a bit as it’s from 2011.

Let us not forget that many people are living examples that we can and do cure cancer, it’s just difficult to define “cure” – 5 years free? 10? We all die of something. But particularly “treatable” diseases include some forms of leukaemia, breast cancer, skin cancer – surgical techniques, chemo- and radiotherapy have come a very long way in the last 50-60 years, since DNA was discovered and we started to learn a lot more about this hugely varied set of diseases.

There is no cure-all, however, no magic bullet. Cancer is hugely complicated and treatment options and success depend on where it is (what kinds of tissues and cells are involved), what caused it (cancer can have a hereditary [genes inherited from parents] basis but it can also be completely due to the environment, but most often a combination of the two) and which mutations are involved, amongst other things. It’s not one disease but many. Some forms like certain brain tumours, pancreatic and ovarian cancer are still very deadly. Others aren’t necessarily a death sentence but more of a condition that can be managed over time.

People are working all over the world on all the kinds of cancer we know about, from understanding things down at the cellular level up to making and optimising drugs and testing them on people, all the way to surgeons, doctors and nurses looking after the patients.

Everyone is affected by it, and recently (Ed: now some years ago!) I commented on a friend’s post about how offensive it is when the alt-med conspiracy crowd accuse ‘the man’ of suppressing cancer cures.

There are some, they’re out there and they are used. We’re looking for better ones. But be wary of miracle cures; they’re a waste of time and money. See Sense About Science’s Ask for Evidence campaign that aims to address this.

A silly article was doing the rounds when I originally posted this (May 15 2011) saying that some research group has found the cure to cancer and it’s a simple, freely-available chemical that messes with aerobic/anaerobic respiration.

The article is mostly nonsense, with some bits of basic biology thrown in that make a small amount of sense on their own, but not in the way they’re cobbled together here.

I wrote this on a friend’s facebook post after they called me to come and have a look:

1. Glycolysis does not immortalise cells by switching off the apoptosis (cell death) mechanism, that’s BS.

2. Cells become transformed (potentially cancerous) for very many reasons, the mitochondria aren’t usually directly involved, though suppression of apoptosis is one of about 7 conditions that need to be met for cancer to occur.

3. Metastasis (the process of cancer cells leaving the original tumour and travelling to elsewhere in the body, forming new tumours) is not due to lactic acid production. This is just crap.

4. Mitochondria aren’t “human cells”, they are human cell organelles; there are many within our cells. They produce our energy. Wikipedia can tell lots about those but whoever wrote this clearly doesn’t have a clue.

5. DCA may well be a useful chemotherapeutic agent in some cases, but one paper showing it kills some cancer cells in a dish and maybe shrinks rat tumours is not enough to trumpet to the world that there’s a cure for cancer. Our lab wrote a similar paper last year; it’s just one of many findings that needs to happen before a drug gets taken seriously, and if something is widely-available and non-patentable, it may not be grabbed up by Pfizer and co. but that doesn’t mean other people won’t still work on it (see curcumin/turmeric, for example).

Overall, the article is rubbish, ignore it!!

Ed: the same advice applies to any person on the internet who claims they can cure cancer. They can’t. No one person is ever responsible for this*, no one agent, no one dose or visit. Talk to people who have lived through it and they will confirm this. And don’t dare tell me or anyone I work with that we don’t want a cure to get out, just because we’d have to find another job.

*Edit: treatments and cures for patients come from the following (including but not limited to): researchers – present and all who have gone before – and support staff; pharmacologists; medical doctors; nurses; often surgeons; patients who take part in trials; clinical trial administrators; statisticians; investors (making drugs is really expensive); manufacturers (can’t do experiments without equipment); fundraisers (CRUK for example could not afford to fund the research it does without donors, from charity shoppers up to those who leave substantial amounts in wills), animals and techs, and no doubt more.

I know that I, and all my colleagues past and present, would happily find something else to do if it meant that no one had to suffer through cancer and/or the loss of loved ones. I’ve done it twice, most of us have experience of it, and insinuating that my paycheck is more important than life itself is one of the most insulting ideas I’ve ever had the misfortune to hear.

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